spinal adhesive arachnoiditis

Hello Radene,thank you for your reply. I was wondering who else may have it out there. What are the chances of any new research for a cure of this malady. I have been to the "A" word.Radene do you have any need for a cane or walker?Are you fairly mobile?I have read about complex regional pain disorder.Sounds like the sane thing I am going through.What specifically do  you use for the pain and spasms?Nicoletti.

I took some time and checked out the pain topics website and found Dr. Tennant's book fascinating.It is refreshing to read about another pain docs experience.It made me feel better!Thank you ...Nicoletti.

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 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 .

Thank you for the information.Larry did you ever have a spinal cord stimulator? How long after diagnosis did you realize the severity of this disease.Were you working during this time.Nicoletti..

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.

 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.

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

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.

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.

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

He could try a spinal cord stimulator implant.My AA was diagnosed from various catscans.

Scott, thank you for replying. Could you tell me where your pain is mainly located and what it's like? I know everyone is different, but it might help.

Thanks

It moves around.It is like bee stings down the left side glute,hip,ankle and sometimes my heel. Scott.

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

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!

I was told that I could not have a pain pump inserted, that it was too dangerous and I am too high of a risk. I take morphine and percocet and has gotten to the point it does not work. Kat

Hello Dr.,I hope you are as pain free as possible.I hate to say this but I felt like I was the only one.I am so thankful that other people have come forth to share.Thank you..Nicoletti.

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

 

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

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.

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.

 

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

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

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.

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

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.

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.

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.