I was diagnosed with this disorder July of 2006.It is an incurable disease with intractable neuropathic pain.Failed back syndrome,degenerative disc disease,disc ruptures with arthritis in my hip and back complicate this disease as well.Does any one have this or knows of someone dealing with it?I understand it is a rare disorder as well.Nicoletti....
spinal adhesive arachnoiditis
12/11/07 2:57pm
I was dsiagnosed with this horiible condition, in 1998, though wasn't told at the time, that this was what I had indeed got!! Understand that Drs are very reluctant to diagnose this condition. However I am now under care of two excellent Drs with a good knowledge of the condition, and have been fitted with a spinal cord stimulator, which has made a big difference to my quality of life. I also have degenerative arthritis of spine. All this stemmed form a work accident in 1974. Am now confined to an elelctric wheelchair.
12/12/07 1:49pm
I was not informed that I had this dreadful condition,until July of 2006! As you said no Dr. wants to diagnose this or they want to get away from me as far as possible!
My former neuro that did a laminectomy in 2000, called it Surgical scaring and told me to go to a pain specialist! I have a spinal cord stimulator that gives me about 50%,A chronic pain med for around the clock and a breakthrough med as well. I am having a terrible go with the depression.On various sites I have not run into too many that have this!Please stay in touch! My email is scottaugust@gmail.com,thankyou .
2/27/08 2:11pm
Hey,
Iwas diagnosed with A.A. in 2004. I was able to get around with a severe limp and agonizing pain. I now am homebound and bedridden most of the day. I had a Medtronic pain pump implanted in 2006 but it has given me only minimal relief of my pain. I have an excellent doctor who is as frustrated as I am that my pain hasn't lessened and that my quality of life has decreased so significantly. I feel for your pain. I know how hard it is to relate to others how bad you feel. I feel hopeless and helpless and don't like my loss of independence. I hope you can get some relief form the pain and that your life will improve. God bless you and others who suffer with this condition.
Later,
Larry
2/29/08 1:00am
2/29/08 7:48am
Hey Nicolleti,
My doctor made it very clear to me how severe my illness was. I first started noticing symptoms in late 2002. I woke one night with severe lower back pain and pain in my groin area. It persisted and each doctor I went to could not help me. The surgeon who implanted my medtronic pump is the doctor that diagnosed me with adhesive arachnoiditis. I now have dilaudid and baclofen in the pump. My pain is still severe but my spasms are now under control. They were the worst. No, Nicolleti, I haven't had a stimulator but I am willing to try one. No I wasn't working because I had shoulder replacement surgery for both shoulders and a cervical fusion.
I hope you and others like you can get some relief for your pain. I feel for you and anyone else who suffers chronic pain. Good luck to you.
Later,
Larry
On another note I became a grandfather for the second time yesterday. Another perfect grandson.
2/29/08 1:46pm
Hey Larry congrats!I have three grandsons from our daughter and one on the way for our son,his first. Get this, the grandchild to be born will be near or on my 54th birthday! How do you cope with playing and such with them? I see these changes in my ability to due certain things and it scares the heck out of me! I told my pain doc the other day about my increased pain in my groin and he said it was my hip problem. It made me wonder if he just said this to make me feel better?We are going to leave this afternoon for the weekend.Our home town is the destination.I always fear these trips,I worry about taking on more pain. Thank you for your replys. They mean so much to me.You are the first male I have talked to that has this terrible affliction.Later Nicoletti.
2/29/08 5:56pm
Hey Nicolletti,
I'm going to make it easier for you to contact me. My e-mail address is larreey1969@sbcglobal.net. I will be glad to tell you anything that I can about this illness that we both share. As far as the groin goes it might be related to your hip as your doctor says. My groin pain started in 2002. It was on the right side and my primary care doctor said it was a pulled muscle. The pain persisted and has now moved into my left side. My leg and groin pain is now worse than my back. I hope you remain ambulatory for as long as possible. I am bedridden most of the time and I can only get around my apartment with the use of a walker. I'm not able to play with Xavier (my grandson) anymore and that is the most painful thing for me. I'm angry because this was done to me because of too many mylegrams and the dye which poisoned my spine. I hope you have some good days and hope you can improve.
Take care,
Larry
4/ 6/08 3:13am
Hi Larry sorry for the long delay. I have decided to go to a mental health therapist,who is working with a neurophyciatrist,who is noted as one of the best in our community.To be honest Larry I haven't been feeling all that chipper lately.I am so close to biting some one's head off.The depression is worsening and the meds I am on are in question.I take cymbalta 120 mg /day and wellbutrin xr300/day.I also take tramadol for breakthrough pain.I know that. Larry my depression gets out there then I just want to disapear.I feel like I am a burden on everyone.I guess the venting is good. I have your email address.You know you can contact me directly at scottaugust@gmail.com.Thanks for listening!!Nicoletti.
12/31/08 5:47am
Larry and Nicolleti:
My Name is Elliot and I have ( DJD / DDD ) Degenerative Joint Disease , Degenerative Disk Disease, Bilateral Lumbar Adhesive Arachnoiditis, Plus, Just had my 22nd spinal surgery at L3 -L4 with Titanium Pedicle screws to stabalize the vertebral bodies while the bone graft fuses. My Orthopaedic also took out the stainless steel Pedicle screws out from L4-L5 where I had a similar type of surgical procedure. Then he harvested bone from my posterior pelvis for where the disk was and to lay pieces near the screws so we get a good solid fusion. The damn screws would ruin any X-Ray, MRI scan, CT Scan and just waste money--I am so glad he finally took them out and used TITANIUM which does NOT cause artifacts all over the place.
I am fused at: Cervical : C5-C7 with a titanium plate and four srews., fused at Thoracic level: T7-T8 & T9-T10 as well. I am running out of Vertebrae. Lets see, that is 10 vertebral bodies out of 24 if I remember my Orthopaedic training. The weird thing is I use to be a Professional Pharmaceutical Sales Representative for two years and due to my spine problems in the thoracic area, I had to quit the Best Job I ever had (I was 26 yrs. old then). I have a B.S. Degree in Natural Science and Mathematics from The University of Alabama in Birmingham (UAB). I majored in Pharmacology and Biology with a minor in chasing women (computer science).
The real kicker is I worked for The Veteran's Administration Hospital in Birmingham, Alabama in the Research Wing for 4 years-DOING SPINAL SURGERY RESEARCH! It was a Federal Grant to design better spinal instrumentations and test what is the most known instruments used by Orthopaedic surgeons and Neurosurgeons.
So, I know To Much and can "talk the talk" and thank g-d "walk the walk" !
I try very hard NOT to tell Pain Specialist, Orthopaedic surgeons, and Neurosurgeons How to DO their Jobs, But I definitely know my body and what is going on and always get two or more opinions before they do surgery on me. Plus I know all about the medications which is a saving grace.
The problem is my last Pain Specialist for almost six years took out my second pump (Medtronics SychroMed Spinal Infusion Pump) and put me on oral opioids- from "SUFENTA and Pontocaine Intrathecally" to Oral Morphine Sulfate that is called: AVINZA 120mg E.R. capsule that lasts 24 hours!!!! NEVER GET ON a drug that last this long because you can NOT wean yourself off of this medicine yourself, for you will be in terrible withdrawels and it could KILL you. You have to have some Doctor willing to detox you or slowly bring you down with other narcotics.
My girlfriend works on the Psych. Floor for drug abusers and people with many 'MENTAL" problems as well. She learned what happened and asked around if one of the Psychiatrist would be willing to take me as a patient and detox. me, Well I got THE CHIEF of Psychiatry at her hospital who is a GREAT GUY. I did NOT know he was going to admit me to that type of ward at a different hospital closer to my parents house (THANK G-D). He should of just put me on a medical floor, but he thought it was the best place for me---so he filled me with so much medicine, that my head actually was humming and I was high as a Kite...WOW, it really was NOT fun being around the people who screw it up for over 78 Million Adults in Chronic Pain, that''s 1 out of 3 adults or 2/3rds of the adult population.
Here I am with a group of drug addicts, etc... and I am a "Resrvist Deputy Sheriff". The Nursing staff found out and told me NOT to remember any NAMES or talk about it. Which I did, but our first meeting as a group I told them ALL, it's people like you who make my life miserable. I can NOT go to the E.R. and get enough medicine to break the cycle of pain. I am opiate-tolerant, and they want to label you as a drug seeker, but I had my R.N. girlfriend with me so they took "fair" care of me, but NOT one E.R. physcian gave me enough Dilaudid ( 4mg. which first was two mg. and I begged him for more and he gave me 2 more mg. of Dilaudid, plus 10mg. of Valium IM.
I get more medicine for my sedation in the MRI SCANNER, because my muscles spasm and then it's hard for me to be totally still, thus from that point on my friend Cathy R.N. in that department for a long time and knows me very well, went to my friend a long while back and he is a great Anesthesiologist to make me a cocktail to knock me out for awhile and feel so much better when I open my eyes.--They give me 50mg. of Phenergen (anti-nausea med), Benadryl 50mg., Dilaudid 10mg. this time and 10mg. of VERSED this time, (Like liquid Valium) they use Versed to make you very drowsy before procedures and surgeries (plus it makes you forget what happened).
Most people who are opiate-naive usually get maybe 3mg. and they fall asleep before getting to surgery or wherever they need to go and get sedated.
I apologize for making this so long, but hopefully I can help ONE person and that would make me feel better.
"The worst place for someone with Spine trouble is the Emergencyt Room"--Dr. Augusta White wrote that back in 1985 in his book, "Oh My Aching Back"--which is a great book for lay persons and even if you do Not have a bad back --you will learn quite a-bit. Even the best sexual positions!!!
but I had a argument with my Pain Doctor over "25" Avinza capsules that he said I took extra in a years time, well I went ballistic and told him to go f--k him-self, because he is wrong and I can and did prove it since ALL pain doctors want you to go to ONE pharmacy ONLY, which I do, since I know the Pharmacist since 1984 and he is also a Vice President of the Pharmacy and other stores, etc... Plus this pharmacy is Hospital Based. I asked David (My R.Ph) to give me a print-out of JUST THE "AVINZA 120mg. Capsules". Guess what, David, the pharmacist did the counting with me twice like Doctor SMUCK did and it came out perfect to the day.
I went back to see him and slammed it on the exam table and said, "READ IT-AND COUNT IT LIKE THE DEA" because he screamed at me that he counts like the DEA and I should go find a NEW PAIN SPECIALIST that can count. I do NOT know what it is with ALL of these Pain Specialists and others...They get the g-d complex, self-image larger than life and can just be assholes. I had five great years with Dr. Smuck.
Anyway he would NOT admit he was wrong and gave me a prescription and that was it with him! So trying to get a new Pain Specialist is a NIGHTMARE because they call him and he lies and slanders my name. Who are they going to believe? a patient or Physician who is a D.O., Anesthesiologist, and Pain Specialist.
I am so screwed, but my Orthopaedi surgeon told me of a female Pain Specialist 40 miles from where I live each way. So they set me up with her on 12-23-2008 (SO LONG I WAITED)--but after telling her and writing alot of information, plus my Ortho. sent over notes and comments!! i finally got to see her. She is attractive, but very serious, and very to the point, NO screwing around with her or you will be gone. I spoke with one patient and he told me that she will help me, but you better follow everything she ask you to do. Right now I do NOt care since she did NOT tell me to leave, but she did NOT give me any opiates or narcotics for pain except the garbage called ULTRAM 50mg. 1 or 2 every 6 hours for pain. It does not even feel like I took two of them and it's been a week!
I did say I will do everything that she prescribes, hoping after she knows me and see's that I am very compliant, maybe after I get the History & physical, plus the Discharge Summary from the hospital DETOX., that she will see---I am serious about getting pain medicine so I can function and do more than lay around the house and JUST HURT so much its rediculous.
I BURNED MY BRIDGE and have been in unrelenting, Chronic Pain and have to suck it up for Almost two years!! I am miserable and do not sleep even with sleeping pills (Restoril 30mg.).
I take four times a day: Valium 10mg. and Flexeril 10mg. for terrible Muscle spasms. plus, Boniva 150mg. for Osteoporosis--1 tablet each month.
I was in a MVA at a high rate of speed ( 110mph or more), and I was sitting in the "Death Seat" or right front seat. It only had a lap seat belt and we just went out after putting in a new stereo and speakers. 12-4-1977, Sunday afternoon and I was a senior in High School -17 years old. I am 48 years young NOW. My driver friend John went around a corner at this high rate of speed and a V.W. Beetle was over to much in our lane, so John the driver cut the wheel to miss them and he started fish-tailing and then he made a almost fatal mistake, he hit the brakes and we went straight into a dirt wall. What I did not know until a few days later from my friend in the back seat, was that we hit a very large boulder on the side of the rode and that slit the gas tank, and made the car flip over three times --front over rear, not rolling it on the sides. I just remember seeing a dirt wall coming at me and I knew I was dead, so all I did was put my two arms on the old steel dashboard and kiss myself goodbye.
I was knocked out for a couple of minutes and the car was upside down with the hood on my chest and my back on top of the seat-back. My first feeling was a very sharp pain in my thoracic region or about where your sternum is located -----( T7-8 & T9-T10 area remember) !!!! anyway, the car started leaking gas and I felt something wet on my shoulder, it was the gas coming in where we put in the new speakers. I was freaking out, because my friend in the back did not get hurt and was already out of the car screaming to me that I need to get out of the car because it was going to explode. ( Never did). The Paramedics and firefighters got me out with the jaws of life and slid me onto a back board and put a neck brace on me ASAP. They put me down on the side of the road and tried to get my vital signs, but I was already in shock. I felt something wet go down my right leg, so I asked my friend Tom (back seat) what is wrong with my right leg? He says you have a nice size laceration and it will be o.k., then blood started going down my right -side of my face, so I asked him again--what is wrong with my head? he stated that I have a large laceration from my temple back about 4 inches. I finally said to him is there anything else wrong besides those injuries and my terrible Pain in my spine and muscles of my back.
Larry & Nicolleti, I am lucky to be alive and still walking, even though I hurt so bad I want to scream and the pain doctor's med's do nothing so far? but I will give her a chance since she kept me as a patient and I will be a good soldier of PAIN. Maybe after all the paper-work is read from my doctor- Chief of Psychiatry who is only treating me pharmacologically.
and hopefully she will see my spine has been in a war & I was never in a war.
I try to use my humor, music, and other distractions, but I'm about a 8.5/10 on the pain scale or the 5th vital sign. "All PAIN - NO GAIN". I hope you both have a Happy New Year and maybe you need to ask your doctor to raise the Dilaudid Potency, or ask him about "FENTYL" or "FENTANIL CITRATE".
First is Morphine or Dilaudid, then Fentyl, then sufenta the most potent opiate you can put into a pump. also, ask about an anesthetic (numbing medicine) like PONTOCAINE? you have nothing to lose.
Thanks for reading my short story, Elliot, from Birmingham, Alabama.
2/25/09 10:53am
Elliot how was it determined that you had AA? My husband received a steriod shot in his back in 97 and it contained Depomedrol which is known to cause AA. He has had back problems since and within in the last year and a half it has gotten extremly worse. He is now bed ridden. We saw Dr. Burton, don't know if you have read about him or not but he was no help, said my husband did not have AA and told him to go home and join the health club. We are now working with a pain specialist but the meds are making him terribly sick. If you have any advice PLEASE let me know.
PAULA
3/ 2/09 2:10am
3/ 2/09 6:00pm
3/ 7/09 1:51am
3/18/09 5:32am
Dear Paula:
Sorry I have not answered your question earlier-I apologize. I have and will start posting under "Osteoarthritis and Degenerative Joint Disease" - I believe that is the Heading. This is my MAIN problem area even though I have Bilateral Lumbar Adhesive Arachnoiditis as well.
Since I have had 22 spinal surgeries and MANY epidurals, two different Medtronics Intrathecal Spinal Infusion Pumps over many years. This puts the opiate or pain medicine in the area where your cerebral spinal fluid goes in your spine and around your brain. (Intrathecally). If you are a candidate for this surgical procedure to implant this device, it can really help with pain since the medicine or opiates go straight to the receptors versus taking a pill and waiting for it to go through your system, but it depends on the person, and how the trial does epidurally first. A outside of the body pump with the cathetor run into the epidural space where your pain is the worst is how they do the trial. If you get relief epidurally, then the chances are you will get better relief Intrathecally.
O.K. I will answer your question now-I am sick and do not feel well (Sinusitis)= so bear with me at 3:30AM. Anyway, most people get Arachnoiditis from epidural blocks, Myelograms, and other causes can be from- 'Neural Ablations ?" or any time they do surgery on your spine. (Sorry for my spelling -its 4:00AM now), and go figure this is what I did for a living-"Spinal Surgery Research for FIVE yrs" at The Veteran's Administration Medical Center (Research Floor). Plus, I majored in Pharmacology and Biology in College. I know to much which can be difficult, since I want to tell the doctors what it takes to help me (pain medicine wise or in E.R.-which is the worst place with spine pain). The physicians in the E.R. have been "BURNED" by drug seekers with NO real problems. They are the one's that make it difficult for us who really suffer everyday and every hour of the day. It is wearing me down, but I am trying a New Pain Specialist ( A female) and thought she might be more compassionate, well I was wrong. She is cold, and strickly business which I understand her situation, but I am miserable since I burned my bridge with my last Pain Specialist and he is slandering my name and lying about me. It has taken me TWO years without any pain medicine due to my last pain specialist. I had my attorney friend send him a letter that if he keeps doing this I will bring him up on certain "Articles" from The Alabama State Board of Medical Examiners. But, since my Orthopaedic Surgeon referred me to my New pain specialist and I will be going on my 4th visit in April. Hopefully she will put me back on Opiate-Therapy, since we discussed it after I get some medical records from one of the hospitals I was in for detoxification of a very LONG acting opiate. My genius last pain doc put me on "AVINZA 120mg. capsules" which is a 24 hour morphine sulfate pill. Never take long acting opiates unless the Pain Specialist is willing to help you get off of it and do NOT do what I did- I can not take myself off that long of a timed released narcotic without going into severe withdrawels that now would probably kill me?. It was another nightmare I had to go through. I am a very compliant patient, but he accused me of taking 25 extra pills in a YEAR. That works out to one pill every two weeks I believe and he had me on 8mg. Dilaudid pills which I was to take what I need for breakthrough pain and I never asked for it early in the five years I was really with him. What really pissed him off was I went to the ONE pharmacy I get ALL my medicines from and had my friend and Pharmacist print out just "Avinza 120mg. capsules" and we counted it out and it was right on the money. I gave the jerk the printout and told him to go f**k himself.
It was weird since we worked together so well for five years, then the last one was like he just became a unprofessional doctor. He is on his second wife and is Italian, self-inflated, egotistical jerk-to say it nicely.
Well, I hope I answered your question and apologize for telling you my horror stories with these g-d complex physicians. Take care of yourself and I hope this helps you some, other then my fun story. Sincerely, UNRELENTING SPINE PAIN, ELLIOT
8/17/09 10:18pm
My name is Bonnie. I have AA and live with chronic pain due to 6 back surgeries, a spinal infection, botched surgery, a spinal tap leak, spinal stenosisand severe nerve root compression. What I wanted you to know is this, try giving your husband a benedryl when he takes narcotic pain medication. This is mentioned in the patient directions but we really don't know or are not told about this. After a while he will be able to take narcotic pain medication without benedryl and not get ill. I know, I used to get so sick with narcotics that I even threw up in the ventilator after heart surgery. Now I don't have that trouble. Good luck!
8/18/09 12:08am
1/12/10 4:22pm
Paula, I have had countless people tell me the same experiences they've had with Dr. Charles V. Burton. While Dr. Burton's "Burton Report" is open and candid about this disease and how it is caused, when you get down to the nitty-gritty, Dr. Burton denies people suffering this disease because he belongs to the same group of lying hypocrites, that out profits ahead of patients. I once e-mailed Dr. Burton, and he replied, only once, however, after he learned of my disease and my many surgeries, he ignored my e-mails after the initial one I sent him. Also, I used to belong to a few Arachnoiditis support groups, many of the members also had appointments with Dr. Burton, and he was very nasty and insulting to every one of them. So, he is just playing a game with us Arachnoiditis sufferers, and all for MONEY! I was refused to be seen at both the Mayo and Cleveland Clinics, once they heard I have Arachnoiditis. So, it just goes to show you that even well-reknowned clinics like to avoid us who suffer this incurable and IATROGENIC spinal disease! Another well-lauded neurosurgeon, located in the Chicago area, is Dr. Noam Stadlan, but he is also a very arrogant, insulting and belittling doctor, once you get into office with him. Dr. Stadlan also will not "officiate" Arachnoiditis in peoples' medical notes, and he even tell the patients, "So what, if Arachnoiditis is not officiated in your medical notes, what's the difference?" Seriously, this is precisely what Dr, Stadlan did to me, and instead, he tried to turn my medical condition into a "psychiatric" one, to negatively affect my credibility. It's all a game with these, so called "specialists", whose only real "specialty" is making lots of money off of injured people.These doctors have politics and power on their side too, so it's a losing battle, if you try to confront them. One a patient is observed as suffering chemically induced Adhesive Arachnoiditis, doctors put a "flag" in the patient's record. So that, any doctor of specialist you go to, they know in advance that you've been 'flagged' as a "problem patient",and they give you the same arrogant, hurtful treatment. Until our medical system in America changes, this will continue to go on. The United States and the U.K are the two worst countries, in this respect, and you will notice that the majority of us who've been given Arachnoiditis, reside in either The US, or UK. Ciao, Pete
4/ 5/08 5:56pm
7/10/08 6:47am
hello fellow pain sufferer,
I also have spinal adhesive arachnoiditis and was given this little present when I went to the doctor for a simple cort. injection that went VERY wrong. I've been living with this since 1998 now and it just seems to get worse with age. I just turned 50 in June and it's not getting older that bothers me, it's everything else. Like trying to get the family to understand the amount of pain I have, since they can't see my injury and I was a very outgoing woman before this happened, they just don't believe me. When
I miss family functions they think that I'm making things up so I don't have to spend any time with them, boy are they wrong.
Pain medication...a lovely thing isn't it? Couldn't get by without it and wish so badly I didn't have to take any, I don't understand why people want to take it when they are healthy!! The abusers make difficult for actual cronic pain sufferers to keep the med. coming unless you have a great doctor. I've had my nerves blocked and burned and only had 30% relief. The depression and sleepless nights are horrible, so, praying for people who have this as well as for myself is where I'm at. I live in Alaska but now am on my way to Arkansas, I can't take the cold here at all. I hope that you find a friend who stands by you no matter what or how you feel and who will understand if you can't make the Christmas gathering because you feel so bad. God Bless you and all of us who are suffering out there. Give a prayer for the physiciaans in this world so they to will here our cries.
7/25/08 1:38pm
Hello Tamara,
I too have AA; diagnosed 15 months ago. I won't go into all the details. I read in your post that you were on your way to Arkansas, and just thought I would mention that one of the "experts" in AA is a Dr. Aldrete who founded the Arachnoiditis Foundation. see; http://www.arachnoiditis.com/
Not sure if he actually can help or not, but his office is in Alabama (see web site), so you will probably only be a few hundred miles away once you get to Arkansas. Might be worth trying to see if he can help you.
Good luck,
Michael
7/27/08 6:26pm
Micheal,
thank you for the info! still trying to get everything sold here in Alaska! but i can
see the end of the tunnel so to speak. i will see if maybe i can contact him if for
nothing else but to give his name to the new doc i must find when i get there.
it's so fun starting over with a new pain doc, right? but, must hang in there or give
up and i'm not ready to do that. i have been dealing with this for 10 years now
and have gotten used to my limitations, so onward and upward.
i hope you are doing well as can be expected. i don't wish this disease on anyone.
thank you for writing back, it meant alot. God Bless you always.wasilla
9/ 6/08 12:14pm
Hello Tamara:
I also have aranoiditis dignosed 3 months after a 5 level fusion, 5 level laminectomy, bone spur removal (Many), cyst removal. I had extremely sever stenosis they said usually does not get that bad until someone hits there 80's. (I am 49) and I also had facet disease. The diseases were all fixed and are curable. 3 months later I was barely walking and had a hard time sleeping and getting out of bed in the morning. I literally set my clock one hour early to take my morning meds and then go back to bed for 1 more hour before getting up. My diagnosis was in February of 2008. I also live in Alaska (Anchorage). February we had a bad cold snap and I almost missed the whole month of work so I know what you mean. I am already beginning to hurt more. I had a permanent spinal stimulator made by Boston Scientific surgically placed in my body. My Doctor is Dr. Leon "Joe" Chandler. He put it in and it took away about 50% of my pain and I take meds for about 25% more relief. I walk with a cane because my right hip is affected by the disease. My e-mail is jarhead_79@hotmail.com. I will tell you all the procedures I had before the stimulator. It was a last resort. John L.
9/12/08 12:33am
Hello John how are you? Are you still mobile? I am 54 and was diagnosed with adhesive arahnoiditis in July of 2006. Prior to that I had a lamenectomy in 2000.I was pain free for 8 months ,then all the symptoms came back most where my pain was diagnosed in my left ankle. The next Doc I saw was a minimally invasive spine surgeon who asked me why the surgery was done at level 3. I saw the mri and it looked like a string of spaghetti woven together. I also had two disc ruptures at L34,5S1. The surgery he took on took care of the discs,but as soon as he was done, scar tissue was growing together at a pretty fast clip.After that he, placed a medtronic scs in which did not work for me very well during the trial. More scar tissue! Then I tried the precision scs from Boston Scientific,worked like a champ!More Scar Tissue! Oh I forgot to tell about the 12 to 15 steroid injections ,five with out floroscopy.More serious scar tissue with complications.I have severe stinging pain,and numerous falls because of my equilibrium and the dizziness from all the meds.What was real dissapointing,was that the Dr's finally got the drug combinations right. John I went on medicare Jan.1,2008.I failed to remember the donut hole or coverage gap nightmare that comes with part d. Now I have to find a generic med to fit in for cymbalta.
3/17/09 12:19am
Hi, I know your post was from last fall?! , but I just found this site. I wanted to let you know that (you have most likely fixed the problem by now) but I am on the Medicare part D on SSDI, and I am on Cymbalta, the drug provider I use is Humana, and although they've given me some run around the last 6 months on my ADD drugs, they do cover the cymbalta.
I had never heard of this condition, but cringe to think, now before I left my original Pain Mgmt. doc of 4 years I had already had many, many many procedures like the radiofrequency lesioning, lots of injections, epidurals, etc. and recently found a doctor when I moved. He is from Cleveland Clinic but opened a private Pain Mgmt. practice about 15 miles from here in a hospital. THANK GOD!! He's done more in 2 months than the four years I spent w/ the other. I BEGGED the other doc to take me off the Fentanyl patch, he wouldn't agree that it aggravated my bipolar depression.
Anyways, long story short, I was off the patch (75mcg. X 48 hrs.) with hardly any withdrawal, and I was very worried how it would go. But with Avinza and 3 oxycodone 5's (for percocet I think?) I did great. My fibromyalgia pain disappeared!
BUT, not to bore you, I almost share the birthday, I am 4/23/56
I am wondering about my symptoms and this disease you are all diagnosed with, pain clear to the ankle, etc. hardly able to drive. 3 nerve blocks new doc did last month has helped, but it seems my pain meds are not working as well now....maybe it's over doing it cuz I felt better.
Well, good luck, hope you got the cymbalta figured out.
Marty
3/17/09 6:00pm
Hello Nocoletti:
Please e-mail me so we can network. Jarhead_79@hotmail.com. I am 50, married and we have a 17 yo daughter.
John
7/21/08 2:21am
HI
I also have this problem as the result of a motor vehickle accident. In the last year I have had a spinal reconstruction and decompression as well as a total hip replacement., These have taken place in a 4 mponth period and are the best thing I could have done. Yes the surgery will have increased the arachnoiditis but I have lost the severe pain in my legs and back. The hip pain has also now gone and I wish I had had the surgery so much earlier. I can walk!!!! I suspect you will understand just what that means!
The symptoms from arachnoiditis are still there particularly when lying down. We are still tryingto find a drug cvombination to work with these.
Find a good pain specialist who can refer you to a top spinal surgeon. This is what made the difference for me. In NZ I was told I had no porblems other than pain syndrome. Here in Australia I have had the real investigations and diagnosis. The diagnoistci stuff is critical.
Hope this helps
Anne
2/28/09 10:10pm
Hello Anne.I was told time and time by many Drs. that I had bursitis of the greater trocanter of my left hip.After several shots and antiimmflamatories over the course of 3-4 years,I went to an orthopedic surgeon.I had x rays and diagnostic shots that revealed a birth defect that slowly had erroded the head of the femur.I had a total hip replacement on Dec.17,2008.Anne, I also had calcium deposits and bone spurs on the abductor hip tendon. Anne why does it take so long to heal? Did you have pain down your leg like usual arachnoiditis?It seems worse at times.I hoped the surgery might have helped the thigh and ankle and feet pain.I can walk pretty well with out the pain.Thanks,just eager to see how your arachnoiditis has been especially after the hip replacement.Regards,Scott.
3/ 1/09 8:41pm
HI Scott
the pain in the leg went almost immediately after the spinal surgery where the surgeon built up a gap between two vertebrae because the arachnoididtis had eroded the disc. By doing this he decompressed the nerves so my bladder function improved and I have not had one infection since which is a miracle in itself. Other pain went though numbness stayed. Recently some of the leg pain has returned though at present is fleeting. It seems to berelated to the type of exercise I do. The surgeon did expect I would need additional spinal intervention in the fututre. He is a brilliant professor of orthopaedics specialising in spine though he did my hip replacement as well.
The hip pain went after the hip replacememnt. It takes about three months for the hip surgery to really settle down though it has taken me almost a year to be able to sleep on that side.I am fortunate I suppose that my arachnoiditis pain is centered around my rectum etc though it is worse lying down. I describe it as feeling like someone's hand is squeezing hard inside me!
Sorry this is so long. Hope it helps and take care
Anne
3/ 2/09 1:26am
Thank you for the quick response.My pain specialist told me there is nothing more that can be done.He said that most docs would not touch me because of the possible law suits for malpractice.He said it would be a mess if the arachnoiditis flared up my spine and nerves.I will talk again with you regarding your recovery.Scott.
3/ 2/09 7:26am
Hello fellow Pain Friends:
I have not had a chance to get back on this freaking computer due to being ill? or very lazy? Go figure?
O.K., Elliot has had three visits to my "NEW" Pain specialist (good looking lady) who is COLD as the Alaska Ice. So far just garbage medicine that does NOTHING but distroy my liver and makes my stomach hurt!
She said, "After I get some paper-work from a hospital visit"- (I'll call it that) that this younger than me Psych., Neurology, and NOW "Board Certified in Pain Management"- ALL three specialty's ---Kind of link a cafe of trash and head games to me. (And I know's way to MUCH, thank g-d--and will NOT apologize for my Education and work experiences, that have me very knowledgable in my own problem. I'd recommend HIGHLY to ALWAYS KNOW what a doctor's backbround is in and how long they have been playing with us pain patient's!
Dr Freeze told me on my third visit with me about putting me BACK on OPIATES or real pain medicine>I'll see what happen's after the visit and try to let you all know how my fun with Dr. Cold as Ice goes. Try to keep that crazy edge or at least a warped sense of humor or these DOCTOR's will make you "CRAZY".
Let's see, sorry for being a little CRAZY myself this 5am and NO sleep for 6 days straight--so bear with me if you can.
To ALL that hurt like HELL, Besides my advice I stated above about doctor's that you probably already know. READ>>>>READ....and Keep reading about your pain problem. Know Your body and what work's for you! I know you already know this as well, but NEVER give in to those Higher I.Q. people in ONE area.
If I did anything this morning, I hope I made One of you laugh=which is the BEST medicine I know of, except for...........................................................................................................................................
Take care ALL, and maybe next time I'll have something important to talk about and maybe make someone else try to laugh.
In Unrelenting Spinal Pain, Elliot
3/17/09 5:57pm
Hello Fellow AA sufferers. I applied for social security disabilty and was improved in 3 months or less with no attorney. I simply filled out the application, signed a medical release but did not trust they would get the records needed so I requested all of them myself, made copies and provided them to the evaluator myself. All they had was my application, 1 phone interview and that was it other than providing all of my med records myself so I was positive they had what they needed to make the decision. I assumed I would be sent for evaluations like a capacities evaluation, orthopedic consult and a psych evaluation. I was never phoned or contacted again until I received the approval letter in nsuch a short time. I was shocked. My surgery was fusions (5), laminectomy, synovial cyst removal and bone spurs treated, and placement of 4 rods, bridges, pedicles, screws at the Mayo Clinic in Arizona (Scottsdale) by Dr. Barry Birch who was excellent. I had S-1, L-1, L-2, L-3, L-4 and L-5 fused. The first 4 disks were empty of all fluid. I actually showed slow improvement for 3 months before a very sudden decline. I walk with a cane, suffer from depression, anxiety, muscle spasms and severe pain in my spine, legs, right hip, ankles and feet. I have developed neuropathy in both feet, right calf and right hip with pain and have balance problems. I wake up many times at night with my hands, arms and feet numb and throbbing in pain. When I get up in the morning my back, legs, hip and feet are at a 10 pain level. I am able to walk about 50 yards with my cane and am unable to stay still without the pain increasing until I change positions, sitting, reclining, standing, walking and lying down will lessen the pain temporarily but then build again until I cahange again. I have tried my best to work even after I resigned my job after 14 years with a 6 figure income. I could not maintain the demands of any assignment requirements. I worked in a lot of pain but it was brief attempts I felt I had to make. At least I paid a lot into SS disability before I applied so I receive a decent monthly amount but still not a whole lot. I do need group support and need direction but do not know where to go. I receive treatment from a pain clinic and my family doc. Thats it. Please e-mail me at jarhead_79@hotmail.com. I want treatment not just palliative care. Any suggestions? I do have a spinal stimulator with very limited benefit to my pain and medication. I am mostly homebound. At least my wife is a teacher (21 years) and makes a good salary here in Alaska. I do not want to be disabled, I want to try and get better some way. I have a 17 yo daughter in 11th grade. No one seems to want to discuss my disease, pain issues or limitations and so I just keep quiet. People seem to just pretend nothing is wrong with me. Why is that? Thats why I need a support group who can identify with me. Thanks to all who respond. E-mail is better for me since I may not be up to checking the internet. Lifting my arms hurts me at the thorasic level. I still have all of the same problems unfixed at the T and C levels. The Mayo Clinic said they did everything they could do with all I had wrong. I still have stenosis, spondylosis, facet disease, bone spurs a DDD in my thorasic and Cervical Spine but I have had the max done surgically that I was told could be done.
3/20/09 11:31pm
Hello to my friend in Alaska! I hear and feel your pain! I had a simple lamenectomy,preceeded by injections,myleograms and discograms.Following this procedure,more pain and suffering.Then I contact a minimally invasive surgery specialist which is a glorified anathesiologist..Next is a spinal cord stim implant,with meds for immflamation,chronic pain,depression,and more misery.The present pain doc I have,is the only Dr. that would diagnose this A.A. The neurologist that did my first surgery,the lamenectomy refers to this as "surgical scarring!" He would not refer to this for what it is.All along through this I kept asking why my hip hurts.My internist told me it was bursitis.Here come more injections into the hip.More followed until I could not have any more steroid.It turns out to be a hip displacement,caused by a defect that had formed in my juvenile years.It turned out to be bone on bone with the abductor tendon damaged by calcium deposits and bone spurs!Since the hip surgery I have less pain down the leg! The spinal cord stim was adjusted after the surgery,it hurts when I turn it on ! As I heal I will see if this makes me worse.Well Jarhead,I will talk to you soon.Best wishes,Peace.Nicoletti.
7/22/11 10:24pm
Dear Alaskan Jarhead,
Just know that there are millions of us out here. Families and "friends" can have even more trouble dealing with our chronic condition than we do. I have certainly experienced that. Some people are "uncomfortable" watching us in pain and can pretend we are fine if we are expending all our effort covering it up. Those kinds of "friends" should be kicked to the curb immediately. Then there are the people who are somewhat supportive, usually in a non-concrete way, for a short period of time but then "get tired" of our pain and dealing with it. See previous comment about kicking. There is a somewhat more sympathetic faction who actually cannot handle us because they empathize too much and feel our pain. Those people are often worth keeping around. I try to keep interactions with them short during times when I cannot cover and talk about my issues and how they might support me when I am doing pretty well (externally). I find that such people really want to help and just feel helpless. Always give these people concrete ways that they can help (like bringing over a meal or driving you to an appointment or helping your plant your garden). Give them something they can DO and they will cope much better. We must be very careful with the last group of friends that makes up our primary supporters. It is important to give them permission to take breaks from our pain. To have days when you don't talk about it or show it. To let them get away for respite. Remember that everyone has a limit and that doesn't make them insensitive or unsupportive, it just makes them human. We must always keep in mind that our loved ones are going through this with us and need a special kind of "treatment" to survive it, much like we do.
I too gave up a high-paying career that I loved. I had to grieve the loss for two years. Luckily, with time, the pain of that loss has lessened and I have become more aware of my blessings. Like having time to read or paint or write music or play vidoe games or play with your kids or grand-kids. Heck, I really wanted to retire by 40 and I sure got my wish! You gotta be careful about what you wish for!!
Hang in there and check out the stem cell research of Stephen Davies of the University of Colorado.
Robin
5/10/10 5:08pm
i was diagnosed with arachnoiditis in April 2010, i got it from a failed micro disectomy for the left L5/S1. ive just turned 20yrs old an im finding it very difficult dealing with this. i was injured on the job an it appears that workmans comp is going to cut me off. i dont have the money to go see a dr of my own. but if i have the chance to pick one which would be better, a neroligist or a phasitrist? the dr i was seeing after my surgery refused to treat me stating that i was "fixed and stable." im so young to have this for the rest of my life is extremely depressing. if you or someone you know has information or reconmendations that could help me out please do.
6/14/10 3:01pm
I had my implant removed after 5 yrs. I was the first in the state to have the advanced bionic unit implanted in 2005.I fell in 2008 and all the wires had to be re-sectioned and they moved the pacemaker from my low back to my left side. It seemed everything was good until I had a full hip replacement and then it started burning my nerves horribly! It has been 4 days now since. I notice now a degree of breakthrough pain some surgical and the rest the same pain I have known since the first back surgery that something was wrong.The surgeon, after 8 months sent me to pain management,because he did not know what to do with me.10 years now with arachnoiditis probably longer. I was not even taking my breakthrough pain meds before this surgery. I had been taking tramadol,I hate the itching. I pray that I won't have to take any thing when I heal up from the retrieval. Any one else have any similar situation?Nicoletti.
6/14/10 7:58pm
Artie Caton here, again: I have found (and for the last 12 years) and still use what is called the "Hydroculator!" In some Hospital Supply Stores it is also known by the name of "HotPac!" Remember all the trips to the hospital rehab for their "Moist Heat Treatments?" Well, with this pad you can do the exact same treatment at your home and in your own bed, which by the way, you won't then have to get up and torment your back even more from the then needed drive home from theropy. This HotPac pad comes in all types of sizes. But, when you buy yours, make sure that you buy the 10" X 12" ---> Standard Size! You see, if you buy any of the larger sizes, you best have a VERY LARGE pot to boil it in for the 20 minutes required! In place of the sheep skin cover, you can use bath towels and wrap it in them, being sure that you place aluminum foil on the side that lays against the bed. You see, this helps reflect even more heat time to your back instead of the bed. Here is the best part. No matter how bad the pain is at the time, when you lay on the bed with this on top, or, while on your side, having it up against your skin at the level of HEAT that FEELS GOOD, not too hot, I can garrenty you that it WILL PUT YOU TO SLEEP... Yes, I said "Put You To Sleep!" Just call any hospital supply store near you and ask if they have that size in stock. Sometimes they do, if not, then ask them to order you one. It will be the best $39.00 dollars that you ever spent... NOTE: Price may have gone up a bit at this point. Please, you owe it to your self to get this pad. And, think about this for one moment. Remember when I posted the fact that the desease itself (AA) is never listed anywhere just as a known fact that doctors want the public to know about? Well, this too is never talked about with you by your doctors because that would mean that they make less money in office and rehab visits, and this in itself shows just how good these HotPac Pads work for fighting the AA pain!___ Artie Caton ___ ArtieC1@hotmail.com I will also ___ 315 ___ 507 ____ 2286 ___ give you my # if you want to talk about the HotPac or anything else for that matter! This is for you all from the one and only:
Artie-2cool-Caton
7/ 7/10 8:36am
I too have Arachnoiditis and was diagnoised at 30 in 1980. When I was first diagnoised, there were not many people with the disease. The original cause was 2 failied Lamenctomies and 13 myleograms. Within the first few years, my back would go "crazy" with pain, then spasams, then, finally, my left leg went numb. Hospitalizations of 2 weeks and iv pain meds was the only thing that any doctor could find to help. Through the years, I have been to one of amy kind of doctor. I lived 60 miles north of Pittsburgh and was sent to th "big guns" down there. They had no suggestion on treatment.
Eventially, I got so sick and tired of doctors, that I told my family doctor NO MORE I AM DONE! He sent my records to doctor Mayo Clinic and John's Hopkins and they too said nothing could be done. I had many doctors say that there is no way they can operate because scar tissue from the surgeries and the nerves with arachnoiditis look the same. I have continued to ask neurosurgeons and they all give me the same answer - even the doctor I saw this May.
As for spinal cord stimulators, do your homework!!!! There are two types implanted. The first one has leads that go under the skin by an anesthesiologist and rest on the nerves that way, then, you have thin leads go to a battery implanted like on from a pacemaker. Mine was put in my butt. Very bad idea! The othere type is put in by a neurosurgeon and is put deeper into your back along the spinal cord, and then has the same leads and battery (from what I understand). As you figured, I had the first implanted in Sept. 2009 and am now waiting for a neurosurgeon to remove it is the next few weeks. If anything, mine caused me much more pain. I was told by the implanter that this could not be possible! It's my back, I've had arachnoiditis for 29 years at that time and I know the beast! The neurosurgeon asked me what I thought about implanting into patients with arachnoiditis and I told him....BAD IDEA in my case. I thought I had done all of my research, read everything about the implant and knew if all, but I didn't.
As for pain doctors, be cautious. I have had blocks that have worked and some that made me worse. I have only met one pain doctor in about 15 who was not big into blocks. Watch the meds they give you too. I have been on them all. I had one guy who had me on Percocet, MS Contin, MS IR and Methadone. In the area I live now, there seems to be pain doctors popping-up all over the place and then, poof they move to some where else. Question any medication that they give you, read about it all you can and talk to your pharmacy. I now have a doctor that wants me to be on a theraputic does of oxycodone at each visit and is testing. She says that the hospital is demanding it. My response was, "hey, Doc, in the state of PA, driving under the influence includes narcotis, dope and booze. So, if you and your hospital want me do drive DUI, then, sign something that you will take complete responsible for what ever happens when I am under the influence and behind the wheel. If there is an accident, guarantee me that you will pay all legal costs, protect, my home and me. Otherwise, it won't happen!"
I guess the one thing I would say, question everything they want to do! If you get someone who does not want to give you answers about any medication or procedure...tell them, it's been real and it's been fun, but it hasn't been real fun and then find someone else. Any more, I take the good days and say "thank you God," the others I don't do as much!
8/27/10 4:14pm
Thank God for all of you who have posted on this web site... and thank you Nicoletti for getting the ball rolling!
I was just diagnosed with arach 3 days ago. I am a nurse and have worked in the medical field for almost 20 years. I have had 6 lumbar surgeries including 2 fusions from L4-S1. I have had too many other insults to my spine to list. With all of this in my life I had never heard of arachnoiditis until a few days ago.
I have read everything I could find on arach and am stunned that the medical world is so close lipped on this. It makes me furious!!! My doctor told me that he was going to have to "pass me on to some new doc's" in the same breath as telling me the diagnosis!!! He has always been so good to me. He is a Physiatrist (physical rehab doc) and has been treating me on & off since my first fusion in 2004. He has given me the gammit of narcotics, methadone, norco, oxycontin, etc. He rx'd Opana ER 40 mg every 12 hours. It helps somewhat but I still have to take 6 norco a day for breakthrough pain. I also take flexeril, valium, etc. I refuse to take any anti-depressants. First of all because I'm not depressed... truly. I am scared out of my mind and so sad that words can't express, but I am not the kind of depressed you can pop a pill for. Anyway, I have read so much about pain and suffering of arach, and realize there is no cure, but I'm not understanding if people are bedridden, etc because of pain or because of the progression of the disease??? I mean, if you can get a hold on the pain can you function? I have been using a cane since my last 2 surgeries in May 2009 because I tend to fall a lot. I don't get dizzy or anything, I just fall. The pain in my spine is OUT OF CONTROL. I'm sure you all know what I'm saying. My pain is also wide spread, legs, feet, hands, neck and on and on.
I haven't talked to a chonic pain doc yet. As a matter of fact I haven't spoke to anyone except my husband. I haven't worked since my last surgeries, but am still employed by 5 cardiothoracic surgeons. I keep in touch with them and have lunch with my co-workers twice a month. I can't bring myself to tell them about the diagnosis yet (even my best friend works there and we talk everyday, but I am not ready to tell her). They have all been so concerned about me since I haven't healed from my surgeries. I know that they will someday become a part of my support group, but I don't know enough yet of what to expect from this "secret disease".
I would love to talk with any of you who have arachnoiditis. My name is Rebecca and I live in Colorado. I wish each and everyone of you the best and that you all some how find a way to live with this monster that seems determined to control all of our lifes.
Please send me a note and let me know what is really ahead. My arach is progressing daily, and I want to know the truth.
Thank you all, and God bless.
9/ 9/10 3:36am
Hi all I have AA and have had it for 6 years. I have seen Dr Aldrate in Alabama. He was the best. I got alot of information and felt it was well worth the money. I have also recentley went to the Cleveland Clinic Pain rehabilation program. The program is very interesting and very helpfull. I have been looking for support groups as I only take non opoids for meds. I take 700mg of Lyrica a day for nerve pain and 150mg of meprotaline for depression and also helps with the pain. I do sleep alot better since going to Cleveland Pain program. I would not say it is the awnser, but is their a awnser that we are all looking for? None that I know, we search for some kind of relief and their is that but no cure. I have enquired about stem cell and was told it is not advanced to this level with out problems. I much feel the same as you like giving up hope and all my dreams. I feel as if I can not do this another day. I do have 2 young kids a boy 6 and a girl 10 and they make me smile alot and make the pain go away for the minute. My family understands the problems that I have. The things I do know is you have to have a daily routine a schedule and stick to it. That alot easier said then done, soon you figure out you have to fallow it. I try to exercise three days aweek, that is not easy either but you have to do it. When I started exercising I thought hell they want me to do what? I can barely go to the restroom by my self, let alone exercise. My legs burn and sweat almost all of the time. I get shooting pains in stomach and back. I am not sure if we all have same symptoms? I have now been off the narcuatics for 9 months. Some days not sure if this is the right path but I do have a better quality of life. I can actually rember to do somthing other than take my pills. I would love to hear from people who can help or I can help. Dr. Antonio Aldrete and Dr.Ed Covington and DR. Ed Benzel start by talking to theese people. I hope this can help. I would like to ask if anyone who has had this diese for a long time does it just keep getting worse as it seems it has. I just wonder if anyone who has this can actually live a ok life? I'm working on it cheers! Sorry for the grammer I am still working on using full sentences again.
Thanks Shawn
9/ 9/10 10:31pm
I have always been a positive person and full of life until I had a fusion L4-L5 S1 and then the nightmare begun... I had my spinal fusion April 1, 2010 and I have been going down hill since then. My pain is worse,I have numbness, tingling,weakness,no reflexes in my left ankle, I can't bend any of my toes in my left foot and it is now spreading to my right leg. My surgeon didn't believe me or listen to me until I made an appointment and talked to him face to face. Then his attitude changed a little. After going to doctor after doctor I was diagnosed with aracnoiditis and a tethered spinal cord that no doctor wants to touch. My S1 nerve root is permantly damaged from surgery and I have urine frequency. The pain is unreal and I have it from my bottom down to my feet. My tailbone hurts so bad at times. It is a pain you just want to die cuz it never stops. Doctors don't listen and it is sad no human being should have to suffer like this!!! I have been a nurse for 3 years and it was just too hard so I am now trying a sit down job that doesn't seem to make a difference. I go to sleep with pain and wake up with pain everyday. Some days are worse then others. I am a single mom of 4 beautiful kids that are my world and I can honestly say that if it wasn't for them I wouldn't be here right now! Everyday i get worse and pain is wearing me down. MY BODY IS TIRED!! I am going to go see a 2nd pain management doctor to see what he has to say and go from there. I have never been so scared in all my life and hate that my kids have to see me like this everyday! I am still working 40 a week barely but I am doing it for now. I would be great if I could get the pain to go away!! Any ideas on what works the best please???
Thank you Kristy
9/10/10 6:21pm
I am sorry for your pain. You could talk to your pain management Dr. about opiod meds for the intense pain,He or she may also recommend a secondary med for any breakthrough pain that usually comes with this monster A.A. There are so many ways they can assist in pain intervention.One is s spinal cord stimulator implant,designed to scramble the pain signals before they are received at the brain. When I was diagnosed in Oct 2006,I balled for days.I had to sell my share in the company to my partners at the same time that my pain was romping like a ball of fire through out my left side. Keep in touch.
7/22/11 10:03pm
Shawn,
I have DDD in all three parts of my spine, a C5 SCI, and Arachnoiditis in my lumbar region. I have had severe neuropathic pain since my accident in 2002. I am intolerant to most opiates but I can handle 0.6 ml (1.2 mg) of liquid methadone 4x/day along with 100 mg of Tramadol 4x/day (a very high dose), 20-30 mg Amitriptyline (yes, I understand that this is not recommended because of the high risk of seizure coupled with Tramadol), 900 mg Neurontin x 2 (I used to take 2000 mg/day, not a huge does for someone with neuropathy, but it really can impact memory), and a topical anesthetic made of Ketamine, Gabapentin, and Clonidine.
I must say that the pain does seem to accelerate over time but can progress very slowly, sometimes slow enough to keep behind your pain tolerance. I have always been a proponent of feeling the pain as much as possible in order to increase pain tolerance and that has worked for me. I move around as much as possible, take stairs instead of my stairlift, carry weight, walk, do yoga, and do weight-bearing exercises. This kept me reasonably functional for about 8 hours a day. That worked for about 6 years.
Unfortunately, the brain sometimes strikes back when it is assaulted with such severe pain signals for so long. The result can be a dysfunctional autonomic nervous system (Dysautononmia) which can completely sideline someone. Even though my heart was very healthy, when the Dysautononmia hit, I could no longer do even slightly aerobic activities and my walk-about time was reduced to 4 hours on a good day. One result is that I sweat a great deal, often several minutes after an activity has stopped, which results in severe, even life-threatening, dehydration. Gatorade is very helpful to combat this, as is Thermotabs, a salt+potassium supplement, though the latter should only be used with the recommendation of a cardiologist. I think everyone with neuropathic pain should be aware of this. My heart rate, blood pressure, breathing, thyroid, and digestion are certainly affected. My other organs are probably compromised as well, but I am still healthy enough to cope with the problems.
Luckily, one aspect of Dysautonomia, POTS, can be tested for (non-intrusively), and treated with heart medications. Reclining exercise daily is highly recommended -- e.g., on a reclining bike. It never hurts to try the exercise part even if you aren't sure you have this problem. Rec Centers usually have these reclining bikes. Keep workouts short (10-15 mins), if not used to exercise, and monitor BP and pulse. Don't "push through the pain" if increased.
Healthy eating that avoids processed foods, preservatives, and artificial sweeteners can be very good for our overall health. Aspartame is terrible for people with nerve issues.
Everyone on this list should go to Utube and view the 4-part lecture by Stephen Davies of the University of Colorado. He is doing very promising stem cell research that specifically addresses neuropathic pain. His research focuses on regrowing nerves in the scarred spinal cord, which I bet many of you have. We non-paralyzed SCI patients have always been the ugly stepchildren of SCI, but this man is working for us. And since his research focuses on regrowing healthy nerves, it is possible it will affect Arachnoiditis. It is true that he has never mentioned our disorder in his research, but I think the research is promising. The best part is that clinical application is close. The treatment might be available within 5 years. So keep hope alive people!! There IS hope for us.
Good luck and good health,
Robin
2/ 7/11 10:47pm
You know, I am in the same situation. The PAIN is horrendous..excruciating that seems to take over ur life. U sure don't get to do the things u want to do.
I haven't even been dx with the disease,but with what I am going thru..it has to be this. If the docs can't even find out what it is, that is scary and it makes u think..Arachnoidnitis. Am I right? I don't know. I just know I am suffering from my head to my toes..I can't touch any part of my body or I will experience a pain that seems to go thru my whole body.I am always achey,burning,cramping,have stiffnes(sometimes it is so bad,that when I wake up I can't bend my leg..it almost feels like a branch that is being broken..and like, u can't bend it back into place, its proper position.)
I want to add now that if I write and my words don't match, it is because of my eyes..they deceive me..blurry vision gets to me sometime.
MY legs, under my knees, are always so tight. It is miserable. I lay in bed mostly with my legs being messaged the bed. Greatful for that..that is for sure. It still doesn't make it go away, it Never gooes away. I get tremors/spasms that seem to start in my shoulders/neck and wind up in my chest. It is terrible. I don't understand why the docs just don't just get it over with and dx me already.
After getting hit, my life has been through some of the worse pain imaginable..OHH..it can and has been so bad that I would be wreathing around, begging inside to please make it stop. It just seems like no one can hear us and we're screaming...DO u feel that way?
I have got better in some ways and worse in others. I don't understand why something can't be done. I have so much zest for life..so much I want to do. I am so young and have two boys that depend on their mom..and mom is in the bed where she lives..U know where to find mom..I HATE IT..IT seems so unfair to me that a doctor can do this to u and even have their practice closed because of MALPRACTICE..then, they can re-open...NOOO, that just ain't right..I just think of all the other people that are going to wind up suffering just like us.
When I was hit, I jumped on the table. I raised my head and asked, "What happened?" With a studder the doc replied,"Friction"..I didn't like his answer. He told me to put my head back down, then the next thing he said was to raise up real quick. He then got in my face and asked me,"Are your ears ringing or are you having heavy breathing?"..They kept me for an hour on this visit.
The other two visits were not bad because it was done in a different location on my back(the ones done in the Cervical turned out fine,but the one that hit me was in the Thoracic). When they hit me, I knew right then something went wrong, but I didn't know there were things that they could've done to make what happened to me not so bad. Does it or could it ever heal? I asked my NS if it was Arachnoiditis and he said no. Yeah, like he really knows because he is so hands on..not. I don't understand that either. How can u dx someone if u don't even touch them? He won't tell me what is going on..I am just in the dark and am suffering to nooo end...very frustrated @ this.
Going to see an acupuncturist/Herbal Medicine tomorrow, hopefully it will prove to be beneficial in helping me get me back someway. They say I have Myofascial Pain Syndrome..that is your skin, your whole body is affected. Believe me,my whole body is affected, so that might have got that one right. Also,they say I have Spondylosis, it is a form of Arthritis(after looking it up myself and finding out what it really is) and trust me it is tough..if it is what it is and not some spinal cord problem or AA.
I just know that they have changed my whole life by hitting me in my back(Thoracic area). My LIFE consists of this..just what I am doing. I try to keep a positive, patient attitude and sometimes it can be sooo hard, but with The Lord anything can be done.We just got to just keep on a trying, even when that load gets heavy and hard, we must carry on...:))))
GOD BLESS U ALL.. always..Karen
3/14/11 2:35pm
This sounds like a very difficult condition to deal with. The suggestion to join a support group for this ailment seems really sound since there will probably many tough days and it is usually helpful to have someone who can empathize with what is being felt. It must be tough for doctors at <a href="http://www.my911help.com">urgent care miami</a> and emergency rooms to tell people such news knowing that the condition is incurable. Best of luck to you in handling these difficulties and hopefully there is a really good support group in your area.
5/26/11 8:11pm
Hi I two have arachnoiditis for 38 years 5 surgeries 4 fusions, Have been through the mill with constant pain nerve spams headaches.
Finally found kadian only thing that half way works,I feel so sorry for every one who has this horrable problem.
I wish we could file a class action suite against gloxo.
The manufacturer of this dye.
Billie
7/22/11 11:12pm
I am looking for a new pain doc. I actually love the one I have but all he does is give me drugs and do nerve root blocks and epidurals, which may have caused or at least worsened my Arachnoiditis. These injections do nothing for my nerve pain. My chiropractor usually gets better results for my non-neuropathic disk-related pain with simple adjustment.
Can anyone recommend a pain doc near Denver or CO Springs? Preferably one who takes Medicare. Certainly one who can fill out SSD updates.
Robin
(Let me know if this is the wrong forum for such a question)
7/22/11 11:20pm
Has anyone tried Calmare treatment for neuropathic pain? See: www.calmarett.com
Is it expensive? Does insurance cover the cost?
Robin
9/19/11 6:53pm
Hello! From reading through many of you have written here, it occurs to me you most you share a commonaility with your pain that I do not have; you have medical insurance. You all are VERY fortunate becuase I have been told, right to my face, that those without medical insurance don't deserve help. Even though I have been able and willing to pay for medical assistance from my own money, which I have saved up, no medical professional would even help.
I don't have medical insurance because I can't work due to my chronic pain. In fact, I have never had the luxury of health insurance, because I've had health issues since a child. I am sooo tired of trying to deal with the pain every single day.
I am so depressed. I can't do anything without the pain flaring up so bad that I literallly have to lie down and wait to feel better, which never happens. So obviously I have not been dealing well with the chronic pain. I am failing.
I have tried unsucessfully to obtain help; seen 16 different doctors about my pain and nothing, not one single one of them would help me. I have been laughed at, ridiculed, mocked and ignored, for the most part. Even after I explain very clearly what I'm going through, it's like no one believes that there's anything wrong with me because you're not supposed to have this sort of pain. I'm not exaclty old; 30.
I read about people who say they have pain and yet they are still working and right now, for me, that just seems unreal. I couldn't work to save my life, literally. The only way I manage right now is because I'm living wiht a pal who does pretty much everything.
I can't afford an MRI which I've been told would cost around $10k. And my biggest fear is that I"ll never get any help, even if I could afford an MRI. I've heard such horror stories about how the attitude in regards to chronic pain patients being overly-dramatic drug seekers that we're all branded and labeled; hence why someone like myself can't get any assistance. Seems like that attitude among many here is coupled with "work, work, work" doesnt' matter if you're in pain, you're supposed to work and blah, blah, blah. When a doctor looks right at me and says "you should just get back to work; try and work through the pain" as I'm lying on the table, writing in agony, with tears runnign down my fact, I could really give up. What legal job exists that does not require standing or sitting??
I don't believe decent doctors exist in the U.S. We are looked upon as $$ and even though I have read that people find caring, compassionate physicians, I sure haven't found one, or for that matter even met one.
I don't qualify for any assistance, and I sure cannot afford any health insurance since I cannot work at all. I can't sit, nor stand for more than about 5 minutes or the pain starts and I'm crippled with pain. I can't deal with this anymore. When you hurt, no one has the right to refuse you relief. And yet I have been, time and time again because I don't believe for a moment that people in the medical professional care enough about a non-person like myself.
The pain has gotten so bad now I can barely walk at all, and sitting is absolutely impossible.
I have begged, pleaded with physicans to help me, no one cares enough about me to even try and help. I don't have some high-paying job, I don't have a family, or any friends, I don't own a home, I don't have an advocate or anyone to help, I don't have some great education, so I'm not important enough for any doctor to care about, and I honestly believe that. I am no longer naive about why many people go into the medical profession; it's about the money and that old saying of how "every life matters" is, from what I"ve seen, a myth.
At least you all have choices, if a doctor treats you like crap you can go to a different one, if meds don't work you don't have to worry about how much they cost. Because to me paying $400 to $1000 for pain meds is a LOT of money! Doctors take advantage of people who have no insurance, they charge us more, treat us worse and stereotype us liek we're all out buying Prada hand-bags with all the money we saved from not buying health insurance. Yeah, right.
10/ 3/11 12:25am
I have a pain pump it's not helping my pain also take 10 to 14 pills a day my wife well be so mad at me but in 1or2day my car that overpass pillar I lay here at night a it look like the only way I must stop this pain I am sorry there's no better way you people with pain no what I talking about I just can't talk myself out of it any more. I love my wife and son this is so hard if I do this god forgive but I feel more in powered after taking to all of you
11/15/11 12:16pm
Yes, Nicoletti, I have all the signs that I have this disease and I am so tired of suffering and no one listening to me. THIS IS BAD and it is like it doesn't exist to them, they don't want to see it. They keep telling me it is everything else like Degenerative Disk Disease, Spondylosis, Fibromyalgia, but I know otherwise...there is something else and I truly believe it is AA.
My pain is all over and I cramp in my muscles, ache, burn, sting, feel things crawling, feel stabbed or where I have an axe stuck in my back. There are so many different symptoms that there is no way to sum them all up.
IT is the worse nightmare u can imagine. U just know that there is something serious, but u can't get anyone to see and sometimes to believe that a person can hurt that bad. I know, there are days to where I wish I had never been born and that is a terrible thing to think, but it is true. The pain is undescribible and it taunts u everyday. U never know what to expect.
I did have sort of a diagnosis. My Neurologist actually said it and I had to ask him if he really did. I didn't think that they wanted us to have that, since it is incurrable...they really can't fix it or they surely don't want to have to treat something that never goes away.
I was hit in my back with a nerve block down my Thoracic. I jumped so hard when they hit me and my hands and feet are still numb to this day, besides the whole left side of my face and body.
I wish all of u the best of life. I hope and pray that we can overcome this dreaded disease that has taken our lives away from us. Peace and God Bless always.:)))<3 K
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Hi Nicoletti,
I, too, have Adhesive Arachnoiditis in my lumbar spine from L-3 all the way down. I also have Cauda Equina Syndrome (often goes along with AA and adds bowel, bladder and sexual dysfunction), Central Pain Syndrome, CRPS and 1 or 2 other things wrapped up in there. It is an Obnoxious syndrome to have, Sweetie and I'm so sorry you do. With the outdated medical proceedures of Epidural Steroid Injections for pain relief (HA! how about "scar tissue PowerAde?"), myelograms, discograms plus an archaic fear of Opiates addicting actual PAIN patients there are a vast number of us and the number is growing quickly. Read my profile thing and contact me, I'd like to put you in touch with amy support groups (their awexome. Two other sites that have FANATSTIC information on AA are www.theaword.com and www.arachnoiditis.com . There are three good doctors, the best info coming from one who HAS the disease herself, Dr. Sarah Smith. The other tho are Dr. Antonio Aldrete and Dr. Burton. My pain specialist has some of the BEST information on intractable pain around and he has one of the ONLY handbooks on the subject for patients. It's available by FREE download at www.pain-topics.org. His name is Dr. Forest Tennant. Stay strong, dear, talk to God (if you aren't a spiritual person,TRUST ME; it's time to start), and keep reaching out. someone will come alongside to help you through... (hey, I'm one at least, and I'm not going anywhere. There will be more to follow.) I hope I hear from you soon. Radene Marie -- Cook
Marie,
I am at a loss at what I should do. I have fail back sydrome from a fusion of L4/5 to S1. Also had my tailbone removed for severe chronic pain and have continued neuropathy in my feet after that surgery that I believe was Cauda Equina that went undiagnosed. I have a Medtronics Pain pump implanted in Nov 06 that as have my last refill still had over 1/2 the medication in it. My doctor was not overly concerned, even though my pain level's have been out of control. I called today to say something needed to be done. They want me in for a MRI and then a dye study. That really scare's me, because I already have the beginning stages of arachnoidits from my prior surgery scarring, mylogram's, and too many epidural's (I have lost count). But the dye study is really the only way to show what is broken, the pump or the catheter. Any suggestions?
Judy in Washington
Hi Judy in Washington.My pain specialist,recomended the spinal cord stimulation along with meds to treat imflamation,chronic pain,depression and anticonvulsive meds for the constant burning.My stim implant has been adjusted every 4 months to accomadate any changes that occur with the adhesive arachnoiditis.My brain cycles the pain differently because of the stim implant.It scrambles the signals before the brain registers the pain. I did find out that I needed a total hip replacement from an undiscovered bith defect,this incidentily helped correct balance, as it was bone on bone. The surgery also helped the terrible hip and leg burning pain considerably.Keep second opinion appt's ,they are a great resource for more information to help you make the right decision for your pain management.May you find peace in this journey,it is indeed a challenging life! I also live in Washington.
Hi Judy! I'm so glad you reached out and wrote. Such severe pain can make us feel isolated but the one thing to remember is that MANY of us are in the same boat (it's just so dark, we can't see each other!). Hopefully one of us will be able to add some different elements that will help you in your journey.
One thing I have noticed about the syndromes dealing with the lower back (Lumbar) is that be it Failed Back Surgery Syn., Adhesive Arachnoiditis, Cauda Equina syn or the others, they are EXTRORDINARILLY COMPLEX. I mean, with Arachnoididts, just when you think that you have a fairly good idea about what your symptoms will be, "WHAM"! Something new and annoying/horrendous will show up. An important thing I have learned is not to treat the symptoms, treat the PAIN! Symptoms, especially when damaged nerve are involved, as is the case with these diagnoses, the symptoms change very fast according to reasons NO one knows yet. But out of control pain is devastating to the body! I just wanted to add that before we go on.
These dye tests... are they "discograms"or something like that? I would find out the process and make sure if it is "pain re-creation" in any form, that you protest and make them find another way (if possible).
I would also talk with your doctor and make SURE that your Failed Back syn. has not become Adhesive Arachnoidits. With all of the Epidural SI's you had, I would be very surprized if it was not. Those things are horrible for causing AA. Most ESI's use 'Depo Medrol' or 'Kenalog Marcaine' as the material injected and - Believe it or not - that stuff wanrd on the BOX not to inject that stuff in where they do, or it WILL (this'll tick you off) give ARACHNOIDITIS!!! and they still do it! oh that gets me so mad. If you want to show this to your doctor when you ask him, go to Google and type in "End Depo Now Campaign" you can print out some documents that help. If you do have Arach remember - the LESS you do to irritate it, the better. So do the least amount possible to fix your pump and then LEAVE it alone.. And until it is fixed (and even after) ask them to up your oral breakthrough medicine to get that pain under control. That's key.
God bless you much, Dear. I wish you all the best
Radene Marie Cook
Hi, I just wanted to say that I have had Arachnoiditis for the last 37 years. For the first 10 years, It was awful, but then I seemed to go in remission and did not feel any pain, then in 97 I got attacked and got knocked down. I did not know anything about ever having the Arachnoiditis, the doctor that treated me in 97 told me I had it and did for some time. He said the fall is what triggered it. Now that it has come back (since 97) it has been so horrible. The pain is never ending and there is no cure for it. My bladder and bowels have parathesis with a paralyzed stomach. The nerve pain and burning in my feet and legs are such that I never dreamed that any kind of pain could be so bad. I also have pain in my neck going up the back of my head with numbness and tingling. The numbness and tingling are also in my hands, can hardly hold the phone. I also have very deep pain in both of the biceps of my arms. When it flares up, it is in my arms and goes across the top of my chest, causing me to have a problem breathing with sitting down and not moving makes it subside. The bladder problems that I have are so much that I cannot feel that I am going. I can feel the pressure inside that I have to go, but when I go, I have to mostly listen for it. My privates of course are also numb. I had a hysterectomy at 22 so I do not have anything that arachnoiditis affects involving my female organs. My bowels give me a lot of problems. I have to do bowel care at least every other day. The pains that I have in my lower and to the left abdomen are excrusciating. I have a very difficult time sleeping and most nights I don't sleep at all. I have home health care. I have a nurse aide, that comes Monday, Wednesday and Friday. She is so sweet and caring. She gives me my bath, cleans and vacuums and does laundry. She also does my laundry. On Tuesdays and Thursdays, my RN comes, she does my vitals and any problems that I am having that seem to be really bad, she also does my blood sugar. On Tuesdays and Thursdays my physical therapist comes. They all treat me real good and I am very pleased with them all. They gave me a TENS unit to try to use, but one of the leads were burning so bad in my lower back I had to disconnect. I am trying to get another set of leads to replace them.
I am so sorry that you have this dreadful, horrible disease. The doctor really messed up my back. He did one surgery, the when he is done, I am still having a lot of pain, he finds he has to go back in, using the Pantopaque dye for the myelogram. Neither time did they take the dye out. Just like oil and water, they don't mix. So two times a myelogram with the dye, which says on the bottle, not to be used on humans, but they went ahead and used it anyway, Twice did surgery, they cut the myelin sheath, only to leave it unstitched back up when surgery was done, it grew up into the adhesions. Also when they did both surgeries, as soon as they opened up the disc's, they weree all in pieces, which fell down into the nerves, so they tried to dig them out. damaging the nerves even more. The nerves and scar tissue all grew together and are in a ball at the end of the spinal cord. That is where the cauda equina comes in. There is no turning back with the arachnoidits. No type of surgery back there can be done, if they do, it could sever a nerve, and instant paralysis takes place. I had a few years back some nerve blocks, the third one, the crazy doctor punctured a nerve, and now I have paralysis in the top part of my legs. Take my word for it.
even though you have paralysis you still feel a lot of pain. And there is very little pain medicine that works enough to make you feel better. Mine has progressed so much that I cannot sit for long, or stand more than 3 or 4 minutes, I do not use my wheelchair inside my apartment because I am not up that long. But I have to use it if I go outside of my apartment. I have black outs and go to the floor not knowing how long I am out or what. I have done that before and broke both of my feet and had to have casts and boots. That was just about three years ago. But when I fall, I land with my feet buckeled behind me.
Please learn all that you can about the disease, if you have not been diagnosed but in the last three years if they tell you what you have and 4 if they don't, then go ahead and bring your lawsuit against them, they have taken your life, everything that you used to be able to do and can no longer do anymore. Why should they get away with it, with health care in such an uproar right now, they are failing and neglecting one of the reasons why health care is so costly, that is because doctors ar making too many mistakes and being sued.
Take care and you can write to me.
Kat
Hey Kat thanks for your story. I learn so much from others like you afflicted with this horror! We were moving from an area where I owned a local business.This area has been very good to my family and I.We, now over the last few days have moved into a nice home, and our native birth place.All family are here.My daughter and her husband came back first then my wife and I and our youngest son. I have been fighting this move because I knew what kind of impact it would have on my chronic pain via adhesive arachnoiditis.And was I right! The movers as I forgot ,were totally unsympathetic to my disability,yelling out my name and where they should put this box and that one. They played me like a fiddle.I was so warn out. I had to stay in bed a day and a half.A time of miserable suffering pain.Does all exercise flare up this disease.I did fall from a friends back deck,which I think I really might have acclerated this disease.Signed,I'm still living out of boxes!
I am desperately looking for treatment. My name is Tony and I was a construction worker had 3 steroid injection sessions over the coarse of a year and a myelogram that seemed to magnify my pain and added severe pressure headaches..must have infusions of steroid to keep the brain swelling down..Dr's will not even recognize my symptoms..married 13 yrs have 2 boys..at my witts end sleep 3 hrs a day maybe..and terrified. please jrfaninak@yahoo.com
I also have adhesive arachnoiditis of the lumbar spine, which I strongly believe, was cauased from three post-laminectomy caudal epidural steroid injections performed on me. I say this because this awful burning and stinging pain in my lower extremities suddenly and abruptly came on, just weeks after receiving those three very painful caudal ESIs. I have also had three lumbar surgeries, and three surgeries for the trial, implant and revision of a Medtronic Spinal Cord Stimulator. Like most of you, I was never given the "official" diagnosis of suffering Arachnoiditis, only "failed back surgery sydrome" is what appears in my mdical records, however the neurosurgeon who implanted my spinal cord stimulator, and later performed lumbar fusions from L4 to S1 DID verbally tell me that I do, indeed, suffer Arachnoiditis. This neurosurgen also suddenly and abruptly severed me as his patient, very shortly after finally admitting that I have Arachnoiditis. Then, three and half years ago, I had to have my right hip replaced from becoming severely arthritic, caused from having permanent right foot-drop, which after walking almost nine years with a partially paralyzed leg and foot caused my hip to become arthritic. At first, I feared it may have been a condition known as Avascular Necrosis of the hip, however, this was disproven when the surgeon performed the replacement surgery. Often, these neurotoxic steroid suspensions can cause Avascular Necrosis, but in my case, this was not true. The part of my affliction that tears me up is that, had I not had those post-laminectomy ESIs, I would not have become permanently disabled and on SSD. It is a well known fact that epidural steroid injection procedures are NOT FDA approved, and the steroid suspensions used contain well known neurotoxic chemicals, ie. benzyl alcohol and polyethylene glycol. Scientific studies have proven that even deionized water injected intrathecally, or epidurally, is nerotoxic, and can cause Arachnoiditis. So, why do these doctors perform epidural steroid injections? MONEY! Anesthesiologists have no business injecting neurotoxins into people spines, whether done blindly, or with fluroscopic guidance, but the majority of doctors who do these poisonous injections are, in fact, anesthesiologists, but also know very little about spinal dynamics. Their blatant ignorance is what protects them from litigation, but who also ruin peoples' lives, in the name of PROFITS! My instance of Arachnoiditis has spread from my lower extemities into my arms, hands, chest and even occasionally felt on my face and scalp. We Arachnoiditis sufferers are seen by the medical community as "orphan patients" because doctors have given us this incurable disease. I am certain, many of you here have also experienced it being extremely difficult, if impossible, getting a definitive Arachnoiditis diagnosis, and that you've probably been turned away by countless neurologists and neurosurgeons. Believe me, these doctors know EXACTLY what is going on, only the money comes first. I hope, I have helped enlighten some of you. Sincerely, Peter Renardo
Peter,Nicoletti here.I read your story and it reminded me of all the shots they,the quacks had given me before my left lateral hemi lamenectomy
! I do remember having several wonderful myelograms,where they put this wonderful concoction of toxics into your spine for your suffering.The young man who looked about 20 yrs old told me he was a Dr. a radiologist.This guy in the name of science,I swear that is why they call medicene a science,so they can use us as live specimens!!! He proceedes to spend 10 minutes trying to get the needle in the right spot.I know for a fact he hurt me over and over until he had to call in a more experienced Doc.Here comes the actual surgery.After, the neurosurgeon came in to reassure my wife that he was successful.He then said if my pain came back he would trim the disc down a bit. 8 years go by and sure enough my pain comes back with a vengence! At this point I am limping in to his office. The neuro told me that I need to go to a pain management specialist.I was so angry at this guy with his expensive haircut,suit and car to go with ! Three years later I am fighting social security for my disability.Finally an administrative judge comes to the town I live in.I was turned down for 3 years,because they did not think my back was that bad at all.When the judge finally looked at my diagnosis which was not made for obvious reasons by so many Docs,he apoligised for my long delay,knowing that this spinal disorder was indeed a rare and crippling disease!Peter I know exactly what you are talking about. No wonder Adhesive arachnoidits has but so many into wheel chairs and broke! I have a spinal cord stimulator,that was put into in 2005.5 years later the thing is caput.It stopped working for me but against me. It actually stings the nerves so bad,I had to shut it off!I can only rely on meds and P.T. and counseling.I feel for your blight and I will be thinking about you and your situation.Take care!Nicolletti
cs
I was diagn. with adhes. Arachnoiditis & failed back Syndrome in 2002. I now have spinal stenosis as well. Taken all different kinds of meds, had a dorsal column stimulator, which worked for awhile until the permanent lead was misplaced, just now tried another trial lead, but now it makes pain worse. Use a cane & sometimes a walker. Don't sleep much. Still working part time and a single mom of a very active 5 yr old Boy. Barely making it. Does anybody have any suggestions on what I should try next.
Thank You!!
Hopeful
Hello, My name is Artie Caton, I live in Utica, NY PLEASE, I beg you, DO NOT HAVE THAT DYE TEST.... It will INCREASE the ARACHNOIDITUS 30 FOLD MINIMUM!
I am just a shell of a human and it is now eating up my brain too. I am just waiting for my number to come up now <hospital bed> 92% and electric wheel chair <8%>
I have had this growth starting in 1978 and it was just 1" in area consumption at L5. Now it has consumed 85% of my entire body. I beg my doctor for a lethal injection every 30 days. The rest of the time I am begging Father to take me home! My entire family and my wife had disgarded me like a dirty rag because "THEY" could not handle watching me suffer in pain. Have been 100% alone now for 29 years...
God Love You, Artie
I am so sorry to hear of your plight. It must be very,very hard to live in your condition. In some states you can have your wishes granted to end your life. . I will pray for you! Write to me anytime.
I am so sorry to hear of your plight. It must be very,very hard to live in your condition. In some states you can have your wishes granted to end your life. . I will pray for you! Write to me anytime.
I am so sorry to hear of your plight. It must be very,very hard to live in your condition. In some states you can have your wishes granted to end your life. . I will pray for you! Write to me anytime.
Dear Hopeful. The only meds that have helped me are Methadone,because it stays with you all the time. I take ultram for breakthrough pain,listed as non narcotic but still acts as one. My pain doc does not want me on any other meds because of the breathing problems that can occur. Have you tried any other treatments. There has been real promise with stem cell injections into the spine. I had a spinal cord stim implant put in in 2005. Then I discover that there was litagation started against him for seriously injuring patients. He was an anethestiologist,who now can not practice this kind of medicene with out a neuro watching and advising. My stim was just taken out yesterday.I had enough.... Regards to all that suffer!
Dear Hopeful. The only meds that have helped me are Methadone,because it stays with you all the time. I take ultram for breakthrough pain,listed as non narcotic but still acts as one. My pain doc does not want me on any other meds because of the breathing problems that can occur. Have you tried any other treatments. There has been real promise with stem cell injections into the spine. I had a spinal cord stim implant put in in 2005. Then I discover that there was litagation started against him for seriously injuring patients. He was an anethestiologist,who now can not practice this kind of medicene with out a neuro watching and advising. My stim was just taken out yesterday.I had enough.... Regards to all that suffer!
Hi Peter , how are you doing? You probably saw that I had my stim out yesterday. I had my I.P.G. out for the burning pain it put on my plate. I am bandaged up real well. surgical pain is treated with tramadol[ultram]. I am only on meds at this time. Regards,Nicoletti.
Kat, thank you for your insight. I think though I might be of some help to you and Tony and the one who is frightened from yahoo. Forgive the large print, please, My eyes are starting to go too. Kat, DO NOT HAVE ANYMORE MRIs, MYLOGRAMS, and CORTIZONE injections! They have proven that they too have been found to not only agravate the noid growth, but even starts it! When they did the tens unit on me I wound up with 3rd degree burns. There is no longer anything that can be done for me other than (now at this point) giving me MILILETERS of morphine and massive doses of Oxycontin, Norontin, tegratol, Meclizine, Loratadine, Cyclobenzaprine, Ibuprofin, acetaminophen, Visteral, and Docusate-Colace... They cut me open 7 times for fusions! Actually, for those who don't know, "The only place you arachnoid from is having Surgery itself!" It has been proven that the ones who have the surgery within 24 hours of the injury, the surgery is a success - no arachnoid! Any longer than 24 hours you are a garrented growth statistic. And they ALL KNOW THIS, but they cut us anyway. we are just human teaching manakins that they use to teach young doctors, period! I just got out of hospital. As they did the 1st CT of my brain, they came out and asked me if my family had a history of cancer. Then, after they took the 2nd CT, they came out and said to me, and I quote! "Artie, we cannot believe whaat we are looking at here, we need to do a 3rd CT, is this ok with you?" How stupid a question can they ask under the cercumstances? Now here's one I'm sure will get a laugh from some of you! As they work on me, no matter what state I'm in they all tell me the exact same thing: "Mr. Caton, you should right a book baout the hell you have gone through. It might just help someone else who may be hurting!" Oh WOW, I can't wait to sit at my computer and think back through the last 32 - 37 years of hell I've gone through and live it all over again on paper. So much fun wow! What the fuck is wrong with these people? I am not trying to sound like a wise-guy here, I just want to shorten what I want to say for all our sakes. At this point, I live through every single thing that YOU ALL have explained that you have, plus one thing that has to be said the way it is, so please, forgive me... Talk about something funny, heere I sit, a 54 year old Fireman who walks through fire, literally, but I am scared to death about going into my bathroom to sit on that bowl. When I move, correction, when all the medication finally makes my bowls move to relieve myself, I cry like a fucking baby. It feels as if someone is slowly cutting my intestines open inch by inch. Once I have moved my bowls, I then have to use a steril glove to shove the 5 to 8 inches of my intestines back inside where it is supposed to be...! I wish to God I could tell all of you my story. Try living with this in a prison cell. When they took me to the hospital for my last proceedure, my wife put my two boys up into the ambulance to kiss me and tell me that they would care for me when I got home. So, after the two weeks were over, they took me home to find that EVERY FUCKING THING THAT I HAD OWNED was all gone. She left me a letter in my wheel chair that read: Sorry, I can't stand looking at you anymore! I sat on the floor after I made the guys leave me there, shot a complete vial of demerol into my left leg artery and shot myself in the head. After they brought me back to life, they sent me to prison for five years for attemped murder on one's person! I am going to check into the other states and their options... Do you realize that "DOGS" in oneida county NY have more rights than I do! They get put down. It's the humane thing to do so they don't suffer! Wow, suddenly the font size goes back to small all on its own...!
God Bless All Of You,
Artie
DO NOT DO IT SWEETHEART, THEY TOO CAUSE ARACHNOIDITUS... ASK THE DOCTOR TO SIGN A GARRENTY THAT THEY DO NOT CAUSE ARACHNOID AND WATCH HIS FACE CHANGE COLORS... THEN ASK HIM WHY HE WILL SUBJECT YOU TO THAT PAIN FOR NO REASON! ARTIE CATON...
Artie I can not even know,beside the miserable suffering pain brings. I am lucky to be in a state that offers assisted suicide by 3 Dr. sign offs,meaning they must all confer that there is no hope!
GOD LOVE YOU ARTIE...:)))))
I am so sorry 4 ur pain. I understand. I was hit by an ESI back in Dec.26th,'06 and ever since..like u said my pain went into overdrive. It is the worse pain imaginable beside dying. I truly feel that way. It is even described as being like terminal cancer, but not dying. SOOO true. I haven't even been dx with AA, but no doc wants to dx you with it bc then, they just give prescriptions out..there are no more procedures to do, so therefore no more $$$$$ 4 them. I am sorry, but it true, in my case and I have read many many stories talking @ this same kind of pain..really it is unbearable agony..but we seem to muddle thru each day and thank GOD, HE is with me. He has to carry me a lot of times, but I am so glad He does.
How r things..or should I ask? I hope better even though it seems this cold weather coming in is hurting me more. THis doesn't make sense to me bc I keep the AC on constantly it seems. It is 30 or so here in AR and my AC is running. I live in a mobile home and stay in the back, so maybe that is the reason.
Wow, is this some kind of outbreak or something? Are they putting something in the water? I just fwant my life back. I did find an interesting fact @ my situation. I found out that the pain clinic that did my ESI ...CLOSED last yr. or so for ...MALPRACTICE..HMMM? And guess what, I moved from the area and didn't hear anything @ it, I can't find any info on it. I am so irate!! They can take away my life, but yet after being shut down for practice..I can't find anything @ what they OWE me for the suffering I am going to have to go thru the rest of my life. I know this has to be AA bc I have had 14 MRI's,Myelogram(yeah, I know..I had it in '07 and did it ever make things worse..ohhhh),EMG's(in which show carpel tunnel of both hands-what? oohnnnnoo, I don't see how since I haven't been able to work since '04 and it's funny the EMG is just now gonna show that? Why didn't it show it when I was going thru all those tests in '05 or even after the surgery? OH just don't get me started. The agony and misery that I have been thru I woouldn't wish upon anyone. It is utteral H*** on Earth. It is just strange how all the test and bloodwork have all come back normal, except for this last MRI I had showed a place in my Thoracic and I am wondering if it is where I was hit by the ESI. The place they found sure looks like it's right on it! All I know is that I go thru this daily and the burning,aching,stabbing,did I say burning..yeah,it's bad..not to count stiffness,weakness,the fatique,the depression from it sometimes makes you want it to be sooo over, but unfortunately for almost 5 yrs. I have been in pain. NOT FUN..did I say I have two teenage boys..ohh and stress doesn't do well with this. I get so tense. Of course, my muscles stay in knots, right now I think all of my trigger points are knotted up so tight. I think I have the satellites also. It's a bleep(sound effects..I am still a character when I can..that is after my Fentanly patch kicks in and that could take hrs. oh well, we must keep movin' on..(pun intended..i just wish I could get out of this ole bed..so boring and to think I used to work professional..ok ligit..Nashville-Grand Ole Opry,Opryland,Nashville Network,sang/danced in a show in the them park and it was great-it's on my site-check it out- http://skeet65.blogspot.com/ It does have some good fun and info, see ya there.
I did get hit by an ESI and I jumped on the table like a lightning bolt had struck me. I looked up friom the hole and asked,"What happened?", scared you know. THe doc answered telling me, "put your head back down"..then said it was friction as he studdered it. Then he told me to sit up and got right in my face and asked, "Do you have heavy breathing, are your ears ringing?" OHHH. I knew right then something was wrong..and upon me discovering before I even got off the table that my hands and feet were totally numb. I could tell they seemed worried because they put me into this room..and may I remind you now that I had two prior ESI's, but these were in my C's and this one was in my T's. I even heard a nurse b4 he even done the procedure, "Why is he going thru her T's when all of her problems are in her C's?"
They kept me over an hour with my hands and feet still numb..I got to leave. I wondered why they had kept me and the other times hadn't. I've also read where they suppose to clean it with Lidocaine b4 the procedure..not me. I even had to endure loud and I mean loud music meanwhile it was going on. The doc was laughing and talking @ his trip to LA., then BLAM it hit. After that my life has been utter chaos.
I will keep yooou guys in my thoughts and prayers. So, like he says KEEP UR CHIN UP.. Take care always and GOD BLESS.. Karen
Kat & all yous guys out there suffering 2,
I thought I was in bad shape. I suffer and even though I haven't been dx with the AA , I truly believe I have it. THe docs can't find what it is. I have had so many tests. I posted a lot to Artie. If u could read it. It says more than I can put down this time, I get writers cramp and lol ..I guess tyers cramp too. They, the NL say that I have carpel tunnel in both hands and I can see the right bc I have always been a worker, but it didn't show up at all even after surgery until 4 yrs. after surger and I hadn't worked since '04..Hmm? something just isn't right.
I had a surgery on my C5-C6 spinal disk. and at the time never did they say I had any other problems or even discussed anything serious. I asked my NS after seeing him 9 out 11 months the yr. of the surgery, what is making me hurt so much. He asked me, " where is the most of your pain located?" I told him the muscle part of your arm(don't know the actual phrase..should)...he said, "that is your C5." Okay, how?I thought I didn't have one.
I even had a friend of our family that has had 800 hrs. of Neuropathy and told me that I had a screw that had been placed in an opening and it had been set right on top of the nerve. OUCH..more than ouch. I am frustrated,tired, aggravated. I took the letter my friend wrote to the NS, thinking alright hows he gonna get out of this one? He just handed me the letter back like it was nothing and didn't even comment on it. MAN..what does it take to get their attention. I even asked him at another visit just last month.."IS THIS ARACHNOIDITIS?"..he said "No". HMMM..they did not do me right the last vist. I set in one of their office rooms in a wheelchair for 2 1/2 hrs. MY head was on my chest. I also saw a piece of paper that I think I wasn't suppose to see. It said, " Mrs. Elmore was here on her last visit stating that her plates had moved,they had." That is exactly what it said, but he is still denying that there is anything that is wrong and just sends me on my way with more questions than answers...I hate that. I WANT ANSWERS. Where are they?
I wonder which one is my problem. ALthough I have had so many tests run..I still just have a list of words that to me don't explain. I have to look them up to find out just what they are...and why do I have it and how did I ge it?
Dx with: Spinal Stenosis, Spondyosis,Cervicalgia(this is a good one is just means PAIN),DDD of Cervical,Lumbar,Hip/Joint,CM,VA,Fibro,Oh..I forgot one of the bigggys..MYofascial Pain Syndrome(looked this one up and it is true @ it being painful, but I feel like I am dying and I can take pain...I am tough) I know I am leaving a few out..but that's okay...still thinks it's AA. I won't give up,I am a fighter.
I have you guys on my mind and hope that things are as easy as they can be. I know I never expected my life to be this way, but doing the best I can with what I got and believe me I feel so blessed even though things are the way they are. Take care all and always GOD BLESS..Karen
PS Check out my site, I desperately need comments.. It is new, but needs friends to comment like here...THAT WOULD BE GREAT!!!
htttp://skeet65.blogspot.com/ Come see me:)
Hello, I haven't been dx with it yet,but feel strongly @ having it. It seems that the docs can't come up with what is making me suffer every single day. I have pain all over and especially under my knees(they feel like someone is pulling the veins and muscles out. I am sooo tired of this. It is driving me batty, I think.
I am so sorry to hear that ur in PAIN. I can relate. I really think that what I am going through is utter he** on Earth and I can be safe to bet that u feel the same way. It is something that no one should go through!!!!!
@ my knees, do u have pain that is strong behind them. It is everyday that I have to lay in bed and elevate them and turn the vibrator on..to ease the tension in them. The pain is all over. I have head pain that is right on the temples of my skull(mostly left,but I do have pain in both). I was told by a doc online that it was possibly Temporal Arteritis, but what @ the pain that is killing me in the rest of my body? Where is that coming from? This isn't some little ache or pain..this feels life threatening. I had pain so hard on my left temple area or like someone was pressing there with their thumb as hard as they could. THis is NOT right. SOMETHING is terribly wrong and the docs that I have been seeing are not seeming to be interested in doing anything, but filling their pockets..SOrry, I am down on just @ all docs since they are not helping me get rid of the pain 4 good. They just give me more medicines...NO...I don't want medicine just to cover up the PAIN and mask whatever is really going on. Now, don't get me wrong, I know I need the medicine just to get through a day, but it doesn't have to be forever...THERE HAS TO BE ANOTHER SOLUTION TO OUR PROBLEM.
Do u know that the place that did my ESI (nerve block) closed 4 quite some time and just now re-opened...YEAH, to wreck someone elses life. I have to do something to prevent someone else from feeling this pain and they owe me some well paid PAIN compensation. I feel that from what all I have been through, they do owe me and I might be wrong from a Christian point or view, but it is not fair to lose ur whole life over someone else making a mistake..is it?
I just want to know what this IS. I have been suffering for over 5 yrs. and that is enough to know that something is not getting better...it is getting WORSE.
The day that they hit my spinal fibers or surroundings or maybe even the cord itself..for I can't stand for over 5-10min. and that is not right. They found a place on my Thoracic just last month, but the NL isn't doing anything @ it because he says it is out of his area of expertise. WHAT? Then send to someone who knows what the heck it is because that is where I was hit( I Think..because it is in the same vicintiy)On top of everything else, while I was laying there getting the procedure done, they had music blairing..and I mean BLAIRING..and the doc was laughing and telling his associate or whatever that he was taking a trip to LA and was going on @ that and then he hit me. He made me sit straight up from that hole my head was in and asked if my ears were ringing or did I have heavy breathing?..He messed me up..
I FEEL ASLEEP>>>SORRY 4 all of the k's..just ignor them. I can fall asleep in a drop of a hat..and this is one of the things u do when u can't control what happens in ur life after someone has wrecked it..
kkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkme
I truly believe that and as a matter of fact, I have already been dx with: DDD of Cerivical, Lumbar & Hip/Joint, Spondylosis, Myofascial Pain Syndrome, Chiari Malformation, Venous Angioma, Fibromyalgia,etc.(I just can't think of what all...OH yes, Migraine. I am sure there is more that I left off, but that is not the point, they are not finding what it is that is KILLING ME..IT could be AA..wouldn't doubt it..
but don't think for second longer that I am going to lay here and die...I am a fighter and he messed with the wrong individual, if thinks that I don't want my life back...I DO VERY MUCH..
, SO SAD.. <3 Karen
I feel for you,pain destroys everything dear to me! Relationships, especially. I will keep you in my thoughts and prayers. Did not sleep at all for the last 4 days! I will try now, before the pain wakes me again, Good night and keep the faith!
I just got diagnosed Arachnoidsitis from my MRI. I have been in pain that know ones seems to understand. I am applying for SS disability how has that went for the rest of you? I have worked for the last 20 years and never been out of work and I am gong nuts.
Hello there. My social security disabiltiy took 3 long years to be approved. I retired from a very successful profession and business. Yes it drove me nuts in 2004, when I retired,and it continues on. I never got over that hump. It has almost lost good friends,lost good friends,and affects every part of my life,including severe crippling depression,which I am fighting still today! Good bye!
Hello, I have exactly what you have AA from L-3 down. Please help me with more info and support groups that you use. Thanks to all...
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Nicoletti, please get in touch with me I believe we are in the same area Wexford PA and can share info. Thanks, Kevin
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Thanks for the message. I am in another state.
Hey Kevin right back at you. I had great luck with a clinical therapist who deals with pain and its isuues.This particular person has constant pain as well.
Kat,
I am so sorry to hear about your pain, especially about thye pain caused by incompetent, uninformed medical professionals. You mention that you are blacking out. Have you been tested for POTS or Dysautonomia? It is not curable but the symptoms are treatable with heart medications that regulate pulse and BP. Dysautonomia is correlated with spinal cord injury--not that any doctor warned me or took any notice when I started suffering life-threatening symptoms. Though this is only a tiny bit of your problem, it certainly can impact your ability to live alone, which you still see to, visiting profressionals notwithstanding. POTs can be diagnosed easily with a tilt-table test. It would account for any heart-related symptoms (racing heart, low PB fatigue, irregular heart beat, very high pulse or BP). It can also cause digestive problems, bowel problems, and the breathing problems you mention. Essentially, the autonomic nervous system no longer functions correctly which affects the organs. I have not found any help for the digestive issues myself but the heart and breathing problems are much improved.
If anyone out there has similar symptoms, there is a wonderful cardiologist here in CO who is very good and able to work with Dysautonomics (many are not). Her name is Dr. Cinthia Bateman.
I hope this reaches you and might help solve a tiny bit of your problems.
Robin
I started receiving SSD in 2000. By then, I had been disabled off an on for almost a year and a half. It only took me three months to get approval. I did not, however, had not spinal symptoms a the time. I was diagnosed with Bi-Polar disorder after a severe trauma (I worked as an aerospace engineer for the 16 years prior with no mental difficulties). Two years after my "permanent" disability began, I injured my spinal cord at C5. That is when my pain began in my limbs, face, and scalp. It has only gotten worse with time. I must sit with legs elevated for all but about 4 hours a day and I cannot sit, walk, or stand for longer than about 30 mins. I haven't been able to drive since my injury. Typing is painful but hard to avoid these days. Without the Internet, most of us would be completely isolated, no? In the last 3 years, I have developed Dysautonomia and Arachnoiditis. Anyway, the combination of all these problems has helped my reviews with SS and my private disabilty insurance go pretty smoothly. Understand, however, that getting SSD for a mental disorder is even harder than getting it for pain, but I am a documentation expert. Which come to the real subject of this post: tips for getting approved for SSD the first time.
One thing you should do prior to applying is find a local lawyer that handles SSD appeals. Have a (free) consult with them to find out how much such an appeal will cost. Given our terrible economic situation and the push by Republicans to shut down SS, SSD is much harder to get now than it was 11 years ago. It is highly likely that you will have to appeal the decision and the appeal must be made within a short period of time. 60% of applicants are turned down after the first application and 80% of appeals are turned down. Be ready for this appeal and, if you can afford it, get a lawyer on your side before you start.
A second thing that is important is to understand all the rules of SSD. Go to www.ssa.gov/disability for all the current details. To get SSD you must have paid enough into SS taxes while working, especially in the 10 years prior to disability. You must be unable to work at ANY gainful employment that makes $1000/month or more. SSD doesn't care if you are an engineer. If you are well enough to be a receptionist and make $1000/month, you will not qualify. SS will turn over every rock it can looking for a reason to turn you down. If you have a home business or a second job or any other source of earned income, your chances are not great. In 2000, it does NOT matter how much your spouse makes, how much your family contributes, or how much you have in investments. Of course, this could change at any time. You must also have been diabled and completely unable to work for a minimum amount of time. In 2000, I think the time was 6 months, but I might be wrong and it could have changed. This is actually one of the really hard conditions for most people. They have to keep struggling to work in order to pay the bills, even if working is making them worse. Know this time limit and plan for it. Get some money in the bank BEFORE you start the process. Get you family on your side to help keep you solvent while you go through the application process. If you are denied and must appealed, do NOT return to work unless you can really do the work, in which case you should not appeal. THe approval process will take anywhere from 3 months to 3 years (if you have a chance at all), so you must be prepared to handle this.
Third, do NOT quit your job if you can possibly avoid it. If you have private disability insurance, apply for it. If you quit, you will lose this benefit immediately (in most cases). I am actually still an inactive employee of my company.
Fourth, Medicare is not automatically awarded if you get SSD! Make sure you have medical coverage, preferably through a spouse, if you are not employed or no longer eligible for health benefits. You have NO CHANCE of getting disability if you are not actively seeing at least one appropriate doctor on a regular basis. That doctor must be willing to say that you are totally disabled from doing any work and must be willing to fill out disability updates. Even after all these years I must have my docs fill out these forms every few years. If you stop treating your problem, no matter how hopeless, you will lose your disability. You must continue to work towards a cure, even if the chances are slim. I recommend that you see new specialists every few years and try to become involved in any research that applies and will not make your condition worse. This requires a lot of research so it is helpful to have a friend or spouse who can help weed through leads, especially when symptoms flare up. A support structure is essential. And understand that even close friends and family members may abandon you because they cannot deal with your pain or simply because they are tired of dealing with you and your endless complaints. The sooner these people are out of your life, the better. Find new, empathic, charitable friends who can hep you cook, clean, maintain your house, drive, do research and take notes during doctor appointments. This last is very important. It is hard to take notes and ask questions and understand what the doc is talking about. Most of us do not have neurology backgrounds; find someone who can spell phonetically and takes copious, fast notes. This is more important than you can imagine.
The final thing that you absolutely must do in order to qualify for SSD is DOCUMENT. This must be done in a formal way not through a stack of sticky notes when you remember. Be prepared for your memory to degrade a GREAT DEAL after you start taking medications, particularly anticonvulsants, narcotics, muscle relaxants, and psychotropics. Always write down all findings immediately after you learn them.
I highly recommend two spreadsheets. One for medications & their side-effects, and one for treatments. You will be required to remember when you started and ended meds, how much you took (start and finish), and what effects you had, both good and. You may need to pull out what other drugs you were taking at the same time. You may need to list the supplements you were taking at the same time. Keep a spreadsheet with all of this information. I will email anyone an example; just ask. The second spreadsheet should deal what, where, when, and with who you received any treatment. Make sure you keep track of when you started and ended treatment, the name, address, and phone of the doctor, the location of the test (if applicable), a full description of the treatment, and detailed notes as to why you did the test and what happened following the test. If new symptoms crop up, make a note. I recommend keeping the treatment spreadsheet in date order and the drug spreadsheet in alphabetical order by common name or generic. Doctors will rarely be interested in looking at these spreadsheets and sometimes will treat you like an anal nut, so only give them to docs who must be brought up to speed on these topics and indicate they want them. Always keep compiled a summary list of your current medications and your current doctors (including all specialists that you are likely to return to). These summaries are the only thing that most doctors will be interested in. However, they can be a godsend for disability paperwork. I recommend sending an updated version every time you submit paperwork (including your application). Transfer all information to the required forms but include the spreadsheets for background and notes unless prohibited. It does seem to make a difference. You may not be well enough now or in the future to keep these spreadsheets up to date, but generally maintaining them once the initial data is entered is not hard or time-consuming. Just never let them get out of date.
Oh yes, if you have private disability, know the terms of your agreement very well. My insurance company would have thrown me off disability after 2 years except I knew of a loophole in the contract. Get a copy of the contract before you are disabled if possible and make sure it is your contract NOT the current contract. In my case, the company was allowed to suspend benefits unless I was on SSD, which they required. Being able to quote from the contract saved me. One other thing about private disability: they usually pay some percentage of your final pay (including bonuses and such) but if you start receiving SSD, it will NOT usually be in addition to your private benefits. Your private insurance will subtract your initial SSD from your benefits and pay the difference. It isn't right or fair, but is the way it is. Be prepared for this. One advantage of this is that the private company is highly motivated to get you on SSD and will provide a free lawyer for appeals in many cases. Find out if this applies to you and take advantage of it if necessary.
A warning to all SS and SSD recipients: SS checks may be delayed in August, 2011. My sources indicate that the checks will probably be sent eventually, but it might take days or weeks. And this might not be the last time this happens. Live frugally and get some emergency money in the banks. These governmental hiccups may become more likely given the astronomical debt faced by the government.
Good luck to all of you. Feel free to contact me with questions.
Robin
I forgot one thing: most people think that once you get SSD you will qualify for Medicare -- not true! You must be on SSD for 2 years before qualifying for Medicare. Be advised that Medicare does cost money and has many copays associated. Having a secondary insurance, though expensive, can help with these expenses. I now have a Medicare Advantage Plan which seems to be accepted easier than straight Medicare but the copays are huge ($40 for each specialist visit, $250/day deductible for each hospital stay (up to 4 days)). The worst part is that these copays can change very dramatically yearly. Last year I paid only $100/day for hospitalization! The health insurance and pharmaceutical companies basically own us and we have almost no control over what they will charge. It is criminal. And this is AFTER Obama's big health reform! I hope the government stops reforming healthcare--we can't afford it!! (Pop! You can almost hear the can-o-worms being opened....)
Robin
Artie, I have been reading all the post on this site and everyone of the stories are my life! Yours decribe how I really feel with the pain and suffering I have been living with. The Doctors in my area have been " Not understanding" what I am dealing with on a every second of every breath I take pain filled life. I have a call in to my neurosurgeon to let me see him for re-evaluation of meds. and his office has not called. I am with you LORD PLEASE CALL MY NUMBER SOON!