I Need Help RE: Permanent Chronic Pain + Nerve Damage, pain meds, treatments, spinal injuries, DRs

08/24/08

Need Medical Questions Answered

Topics:Chronic Pain , nerve damage , spinal injury , Stenosis , narcotics , Massachusetts , Back pain , muscle

Please read my following questions about my serious chronic medical conditions, because you are honestly my final and only hope in helping me answer questions or give information to help treat my medical problems that have ruined my life. You are my last hope, as my life is constant torture and it has left me with nothing and no life or hope or direction and you may be able to help me improve my life and find meaning and joy again. If we get a dialogue going I will use it to help others with info you can provide.

READING AND RESPONDING TO THE BELOW QUESTIONS WITH ANY TYPE OF ANSWER, ADVICE, RESOURCES, FACTS OR ADDITIONAL INFORMATION MAY NOT ONLY HELP TO SAVE MY LIFE, BUT DOING SO COULD HELP YOU OR SOMEONE YOU KNOW SUFFERING WITH ANY OF THESE COMMON AND LIFE DEBILITATING PROBLEMS ALSO, YOU CAN ASK ME QUESTIONS FROM MY EXPERIENCES, INFO AND KNOWLEDE.

TOPICS AND MEDICAL, AILMENTS, TREATMENT OPTIONS, INJURIES, AND OTHER RELATED INFO AND SYMPTOMS COVERED HERE AND IN THE QUESTIONS:

The following questions should relate to these types of ailments, injuries, etc, as these are what I am suffering from. Can you provide information or at least help direct me to resources that may help or lead me to finally treating my current conditions which are all somehow connected and getting worse.

· Neck/Spine injuries (such as disc problems, stenosis)

· Extreme, full and life long back pain characterized by full muscle back pain and spasms only getting worse

· Chronic, severe, permanent nerve damage and pain (for me my neck hurts and sends pain down and throughout my shoulders and arms to my hands which tingle and go numb). This has gotten worse sine surgery meant to fix it and has spread

· Shoulder injuries (I have two torn shoulders with partially dislocation)

· Pain management including Narcotic and non narcotic pain treatments or any other potentially helpful treatment methods or modalities

· Physical Rehabilitation

· Post Surgical rehabilitation and damages from surgery

I am 28 and living in a life of medical problem that have ruined my life and cause me to spend 22 hours a day in bed for the past two years, I live in Massachusetts and am looking for names or types of doctors, treatments programs, specialties or clinics anywhere in MA or in nearby New Hampshire or Rhode Island. EVEN IF YOU DON’T LIVE NEAR HERE OR KNOW OF ANY DOCTORS OR TREATMENT CENTERS IN THE AREA, YOUR INPUT WILL STILL BE INVALUABLE.

FEW QUESTIONS:

· Do you have info on different types of doctors from various medical fields, specialties or fields of focus that may help., as well as well as any medical groups, programs or practices that may be relevant to my situation

· Do you know of medical treatments (such as medications, physical therapy, post surgical rehab etc, pain management) or other treatments that can help even those that may be rarely used because they are new, expensive, old, often passed by, but offer new and different benefit and may help.

· Can you let me know of any Exams, Studies or Diagnostic Tests (such as images and every type of other relevant tests that might help) that are rarely used due to being either too new and thus not widely used or understood. As well as those deemed too old or expensive. Especially those that can provide more info on my case but are two often ignored by doctors.

· Does anyone know of any Massachusetts, NH or RI doctors or clinics that treat chronic pain with narcotics and are willing to work with the patient to find the proper combinations of pain meds and any other non-narcotics that will work? I am looking for someone to treat me with heavy pain meds for a while as my pain is permanent and chronic, but also work to find other medications and treatments that will eventually allow me to get off the narcotics My current doctor does not mind prescribing me the pain narcotics, but won’t try different combinations to see if they work better than the morphine and fentanyl I am on currently and for the past two years.

· What suggestions do you have and any hints of what I can do, buy, take, etc to treat the pain and help the nerve damage?

· Also know of any good doctors or clinics/groups that offer physical therapy for someone with chronic pain and nerve damage? I have been unable to do physical therapy or even any activity for a year and a half due to doctors orders and I need a physical therapist that will help build up my whole body and muscle system as these are weakened and so out of shape I need to rebuild my whole body

BRIEF MEDICAL PERSONAL OVERVIEW AND TREATMENT INFO

3 months ago I had surgery on my cervical spine in my neck due to c5 stenosis. The purpose was to relieve extreme and diagnosed as chronic and permanent pain and nerve problems that shoot down from my neck throughout my right arm and hands which causes numbness and tingling. Now I have the same problem with my left arm and hand which began after surgery Due to having to suffer with this for a year and a half, I have been so inactive on doctors orders that I have extreme muscle problems and pain that cause spasms and my two shoulders are partially dislocated and have torn labrums due to overcompensating for my neck injury. My whole body is out of shape and all muscles in back hurt and need lots of help and medical treatment/rehabilitation.

I have tried physical therapy and nerve block shots and they do not work. Also, I have tried all non-narcotic meds and they do not work, such as neurontin and lycodain. I am told surgery is a possibility, but due to the enormity problems created by my recent surgery the doctors think that surgery would be too risky so they said that I would have to live with chronic pain and severe nerve damage forever. So far they can only treat me with extreme amounts of narcotics such as morphine and fentanyl and that can’t go on forever.

Thanks

Joe

BTW feel free to ask me any questions

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Answers (7)

Monday, August 25, 2008

Karen Lee Richards

In 2003 Good Housekeeping magazine published a list of the top 35 pain centers in the U.S. Two of them are in Boston. Here is the info they gave on those two:

Massachusetts General Hospital/MGH Pain Center

55 Fruit St.

Boston, MA 02114

617-726-8810

Areas of Expertise: Acute pain; cancer pain; chronic pain; facial pain; headache pain

A Top Doc: Martin A Acquadro, MD, DMD

Tufts-New England Medical Center/Pain Management Program

750 Washington St.

Boston, MA 02111

617-636-6208

Areas of Expertise: Acute pain; cancer pain; chronic pain

A Top Doc: Daniel B. Carr, MD

If neither of these work out, you might try looking for a physiatrist in your area. They specialize in physical medicine and rehabilitation and are excellent when it comes to treating pain. If you're not familiar with what a physiatrist does, check out this site: http://www.aapmr.org/condtreat/what.htm

As you said, with all of your pain problems you absolutely need a good pain doctor who will work with you on managing your pain until you find the best combination of pain treatments for you. Ideally he will coordinate your pain management team which would probably include a physical therapist as well as possibly some complementary treatment specialists (i.e., massage therapist, acupuncturist, etc.) Note: Physiatrists are well-known for doing this.

I don't know if you've ever discussed these with a doctor before, but you might want to ask about a pain medication pump or a neurostiumlator as possible options for pain control.

As for alternative or complementary therapies, myofascial release therapy as well as some forms of massage can be very good for relieving muscle spasms. Also, I understand that a really good acupuncturist can often do a lot with pain. I've even heard of surgeries performed using no anesthesia – only acupuncture. Be sure to talk with your doctor about any alternative therapies you want to try.

I hope at least some of this is helpful. Of course, we can't diagnose or treat online, but I hope we've been able to guide you to someone who can help you.

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Tuesday, September 16, 2008

awnelson

Hello, my name is Anthony Nelson and I see you have been trying to get help with chronic pain without much success not to disappoint you or to sound negative but I have been dealing with chronic pain since 1973 and still have little to offer in help when it comes to chronic pain without the public's stereotyping chronic pain. You know the old saying one bad apple spoils the whole bunch believe me nothing could be further from the truth when dealing with chronic pain and narcotic pain relief as for me I have lost my right leg due to chronic pain luckily I am a 100 % disabled Vietnam veteran. I can tell you this much if you are dealing with chronic pain in a extremity and are receiving Social Security Disability at this time the moment you go through amputation of that extremity and have completed physical therapy you can tell the Social Security by because you are now able to be employed according to Social Security regulations. How do I know this because it happened to me once my right leg which was causing me chronic pain as well as swelling and ulcers was amputated my Social Security stopped and watch out for back pay issues because they will do their best to prove you owe them back pay. I still get my military disability thank goodness. Well there is a whole lot more I can tell you about this subject but I am in chronic pain now in fact I have tears rolling down my checks because of the pain and the bad thing about it is that Hospice sees, me three times a week and you would think they could take care of the pain NOT. You see they are used to dealing with people who are dying with cancer and only deal with the chronic pain for a given length of time because they usually pass-away within 6 months or so and then their battle with chronic pain is over. What I cannot get through to Hospice and the doctors is the fact I have dealt with chronic pain since 1973 to present. I lost my right leg to amputation in 1980 after suffering from 1973 to 1980. The was not over because now I had to deal with phantom pains and nerve damage multiple joint damage due to the use of crutches and wheel chairs of and on until present I finally was taken down for good in 2002 due to multiple blood clots and breaking the femur two times in almost the same place just above my right knee. Hospice has told me that it is time for the amputation of my left leg due to ulcers and chronic pain as well as what they call PVD (peripheral vascular disease) I am sorry but I must stop for now because of this pain I will try to write again if I am able to. I can tell you so much that you would find it hard to believe.

Have a good night

Anthony

Thank you for your input
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re: I Need Help RE: Permanent Chronic Pain + Nerve Damage, pain meds, treatments, spinal injuries, DRs
Earl Roberts
Saturday, November 07, 2009 at 06:17 PM

Hello Anthony,

My name is Earl Roberts, I live in Vacaville, CA. Your situation/story touched me to the bone. I am a bilateral AKA. I lost my right leg in 2006 and my left leg in 1999. Fortunately SS has not put my SSDI at risk. However, I am dealing with severe nerve-damage pain in my left leg, even ten years after losing it. My story is too long to go into right now as I just had major surgery on my left elbow and am left with one arm to function with. My right shoulder is also causing me grief as it sometimes will swell in the joint and become frozen with excruciating pain. This has happened three times, last night being the third one. Twelve hours after my elbow surgery (10-26-2009), my daughter called 911 when she heard from my 58 year-old mentally retarded brother (I am his care-provider) that I looked bad. I remember the paramedics helping me, but after 20mg of morphine (10mgX2) & verced I did not wake-up for 36 hours. I later found out my blood pressure exceeded 218/110. The pain I was in almost killed me. I spent six days in the hospital getting dilauded every two hours and the three days after walking up I was so miserable from pain. I like you have dealt for so long the nerve-damage and phantom pain that it has consumed everything that I am or ever was. I must admit when I heard a paramedic tell the doctor over the radio that my BP was 218+ and climbing I prayed for a fatal heart attack. PAIN is the most terrible word in the dictionary. I would like to continue correspondence with you, as venting with another chronic pain sufferer can help in a small way. Thank you Anthony, may you find some relief or help out there and never give up. Earl

Wednesday, February 04, 2009

Bianca

I am 25 years old and have been suffering from chronic pain since i was 16 years old. I just want everyone who sees this to know that if narcotics arent working for you then do WHATEVER it takes to see a great nerve doctor like the ones that I saw at Brigham and womens hospitol in Boston, Ma. I saw a few neurolological people before going there and they were the doctors that finally found out what my problem is. I was immobile and scared...Im you are too become proactive. I am now almost without insurance because i was misdiognosed for so long...and everyone was saying i was crazy. Dont let them discourage you keep fighting for yourself!

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Monday, February 23, 2009

Hopefull

I hope that this message is late and that you have found relief.

However, I also suffer from neck/ shoulder pain on a daily basis and so I suspect you might still be hurting. So I was searching the internet for alternatives as I've had 3 surgurgies which I would say has put me back to exactly where I was before the surguries. Anyway! I came across a website from Cornell University hospital in New York. Unfortunately, I live in Wisconsin so for me wasnt an option. Have you checked out them for help? Their website showed that they have a pain management clinic. They might be able to help you. Well Take Care!

Stay hopeful. As difficult as that is.

Thank you for your input
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Friday, March 20, 2009

monique

This is not an answer. I just wanted you to know that I'm living with the same problem plus my nerve damage causes both legs and arms to tremor. I was talking to my doctor today because the pain management doctor said there wasn't anyting else he could do for me. I had the shots in my neck that didn't work and I can't get anymore of those the only suggestion is surgery and I refuse because that usually makes it worst so my doctor suggeted accupuncture along with the pain medicine. I'm going to try it and I'll let you know how it works out for me.

Thank you for your input
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Saturday, July 04, 2009

Val

Hello, I'm sorry about your situation and chronic pain is a frustrating thing which leads to depression, sadness etc. I know, I have the same problem. I go to a methodone clinic since I cannot find a doctor to treat me at home and going there daily using public transportation is a nightmare. I want to respond to one thing you said about using prescribed narcotics not being able to go on forever. All I can say is as long as you use as prescribed and try therapies, massages etc. I can't see why the use of the drugs has to stop. If the pain is chronic you need help. Just be sure to use the drugs properly, keep communication with your doctors open and maybe you will be ok. Are the drugs controling the pain? If so I feel what you are doing should stay as it is. As they say "if is isn't broke, don't fix it." I wish you much luck and feel for you in this unfortunate situation.

Thank you for your input
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Monday, August 10, 2009

Charles

I also am Living with it. i injured my neck to the point of losing my hearing in one ear and and a numb patch on my shoulder when I was 19 in a car accident. The pain started. At 40, I was a passenger in another accident where we hit a pole and I got whiplash. The forst accident sent me on vicoden and flexoril for almost a year, and off and on over then 20. The 2nd accident put me again on Vicoden and flexoril for another 9 months and lots of physical therapy. My doctor tols me that the only things she could do for me was either fusing my vertabreas in my neck together or just physical therapy. Physical therapy dosnt work. I am now 43 and in pain more often than not in my neck. My left arm is almost completly numb and the headaches feel like someone is blowing a balloon up inside my skull. I can hardly think half the time because I get such horrible headaches from the constant pain in the neck. Basicaly the way I deal with the pain is the old ice/heat routine and an ergonomic pillow. This minimizes the down time I have and lets me be semi-productive around the house. I have tried several different methods over the years such as massage, accupunture, yoga, marijuana, hypnotism, and even prayer. I have had slight results from hypnotism and marijuanna (im assuming they were both phycologicaly helping) But the ergonomic pillow and ice/heat routine is my only relief along with the little vicodin my Dr. talked me into taking. I am only 43 and if Im to live another 20 years in pain, I am not going to spend them addicted to narcotics and very little function liver. This my only alternative