Need Answers Re: Chronic Permanent & Severe Pain & Nerve Damage - Spinal Injury - Stenosis

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New Member

Date Joined Aug 2008
Total Posts : 1
   Posted 8/24/2008 4:41 AM (GMT -6)   
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.

Questions followed with brief medical history and current status


• 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


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.

Veteran Member

Date Joined Dec 2007
Total Posts : 639
   Posted 8/24/2008 11:10 AM (GMT -6)   

Welcome to the forum. I am sorry for the pain that has brought you here, but I think you will find lots of support and encouragement here. You should know that we are not doctors, though. I think some of the questions you are asking are really questions that you would need to talk to your doctors about.

I am a little confused about part of your post... You said you are looking for someone to work with your medications, but that your current doc IS prescribing meds for you. Are the meds you are on not working to manage your pain? Or are you just wanting to stop them because they are narcotics? I know most of us here would love to be able to stop taking all of our medications and not be tied to the medicine cabinet anymore, but part of the process of dealing with CP is making some decisions about your priorities. For me, the meds I take make it possible to get up out of bed and function. They do not even come close to taking the pain away, but they take the edge off a little bit - enough that on most days I can at least be up and around a bit. For me, that is worth the cost of having to take daily doses of medication. I don't have the side effects of drowsiness or "out of it" feelings, though. If that were an issue things might be a little different. I don't know.

One thing you might do if you are looking for new and not well known treatments would be to look at clinical trials. You can just do a google search for clinical trials and find several websites which track current trials and then you could search them by condition and location.

I would also recommend that you search through older pages on this forum as there are several threads you might find that relate to cervical fusions.

Best of luck to you!

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 8/24/2008 1:24 PM (GMT -6)   
Dear Joe,
I also want to welcome you to the HW forum. It's a forum for support, and as Ry said, we're not doctors. I think the best thing I could suggest is for you to first read through a lot of other threads that are relevant (you can do a search of the threads if you want) to your situation. But anything given here is not medical advice, just the opinions of others dealing with chronic pain,

If you're not involved with one of the major medical centers to have your entire case reviewed, that's what I'd suggest. If you're near Boston, there are certainly many excellent hospitals there, although I can't recommend anything specific. Again, some of this you will have to do a google search for and make some choices, unless others here can give any recommendation based on their individual treatment at some facility.

You also said you just had surgery 3 months ago. Three months may seem long, but it's not. I just had lumbar fusion surgery last Sept., and it was 3 months before I even started very passive physical therapy, and still haven't returned to much more exercise. You may be trying to push too fast too soon, but that would depend on what your doctors and PT tell you. Like Ry said, none of us wants to be on the meds we're on, and none of us want to be in chronic pain, but we're here on this site trying to help eachother accept the things we can't change. And we all know that's easier said than done.

I hope we can offer you some support, even if we can't answer all your questions.

Again, welcome.


Veteran Member

Date Joined Jul 2008
Total Posts : 2317
   Posted 8/24/2008 3:19 PM (GMT -6)   
Hi Joe!

Sorry to hear you're in so much pain. I know it took me a good 6 months post-op to even start feeling better. If the second surgery is elective, I would give it a while longer before making that decision. I'm not sure why exactly your doc won't let you do PT. I know I wasn't supposed to do land PT because my sed rate was spiking too high. If that's the case, maybe you can try pool therapy. Some of the people were worse off than I was & they were placed in this swing-like contraption that lowered them into the pool where all they would do for 10-15 minutes was gently move their hands side to side until they slowly build up to adding more active exercises. A friend of mine [who was in really bad shape] started pool PT just before I did & it took him over 18 months to be able to build up to where he could work with water weights and another 6-8 months before he could move to doing some exercises on land, but he went from barely being able to move at all (upper or lower body), to being able to go short trips without even having to use braces.

My doc wrote me for anti-inflammatories when I first started the pool therapy & that did seem to make things a little easier.

PALady's right about Boston having an excellent hospital. There is a lot of research coming out of there, so perhaps they would know some of those "cutting edge" techniques you're looking for. If you call the mainline of the hospital, they should be able to recommend a pain management specialist to you. I know for sure they have them because I was trying to get into a study out there a few months back (was disqualified b/c of a congenital disorder, but the docs seemed super nice & really very caring).

Another option in the meantime, since your PCP won't write for any new narcs, is a topical numbing agent. I use Voltaren gel. It's by prescription & is brand new in the US. It doesn't get rid of all the pain, but it definitely takes some of the edge off. You don't need to put it right over your scar, if you just get it in the general area it will get soaked up by the nerves & find its way over. It's for nerve pain mainly, but I've found it also helps some with muscle spasms.

Also, regarding your muscle pain, there is another thread about myofascial pain. It might be worth a quick read.

I know you're miserable & in a lot of pain, but please don't say this is your last hope. I understand that feeling, but you need to believe that somehow this will work out for good. I have a great "life" mentor. She was my mentor when I was teaching & has taught me a lot about hope, joy & purpose. She was diagnosed with an inoperable benign brain tumor over 12 years ago. She's had to stop working, stop driving, stop almost all housework & now struggles to even hold down a conversation. She's applied to every trial possible & undergone every treatment available, regardless of the cost or the pain of the treatment, but has not gotten much benefit from any of them.
In spite of all her limitations, she is a hero to many. She has shared years of teaching experience with dozens of young teachers, has helped her two kids with schoolwork and now watched them graduate from top schools with a JD & MBA, has witnessed their weddings & given advice about marriage, and generally has been there (even if people had to go to her home to meet her) for countless people during their times of joy & pain with words of encouragement & consolation in every circumstance. Regardless of the outcome (though I most sincerely wish you a full & speedy recovery), your life matters, you can still bring much goodness and beauty to this world, and you can find/create a new purpose for your life if your previous plans are no longer possible. Know that like my mentor, perhaps that new purpose may end up being even farther reaching than what you had ever before envisioned.

Keep us posted on what you find. Hopefully we can celebrate with you when you find the doc you're looking for & get the treatment you need. :)

take care,

Regular Member

Date Joined Jul 2008
Total Posts : 75
   Posted 8/24/2008 8:11 PM (GMT -6)   

I am sorry to read that you are in such pain.

I know well the arms and hands pain and numbness.

I also had cervical surgery and was left with increasing

pain that eventually spread to both arms.

I was diagnosed this year with Myofascial Pain Syndrome

which in the neck can cause all the nerve problems as the

muscle spasms the fascia tightens and then pulls on the

fascia on the nerves, thus causing the incredible pain and

heavy tingling and numbness in the hands and arms.

With the right treatment this can be much improved.

A Doctor of Osteopathy is what you want to look for and

also a therapist that specializes in MFP and fascia release.

With the release treatments for the muscles and stretches

for the fascia I have improved 90% over where I was for

2 1/2 years.

Please look into this as it may be the answer for you, it

certainly was for me.



Regular Member

Date Joined Jul 2008
Total Posts : 75
   Posted 8/24/2008 8:14 PM (GMT -6)   

You did not say exactly what surgery you had????

It may help us help you if you could share that with us.

Also have you had an MRI or CT since the surgery??


Pamela Neckpain
Veteran Member

Date Joined May 2008
Total Posts : 1821
   Posted 8/25/2008 4:41 AM (GMT -6)   
It's late at night. I got a little confused reading your post. Will you write it again
and break it down into small pieces. One question at a time. My pain situation is
much like yours.
(You write so well that you sound a bit like a doctor in pain. Is that so?)

New Member

Date Joined Aug 2008
Total Posts : 2
   Posted 8/25/2008 6:48 AM (GMT -6)   
A myleogram will help the doctors see exactly what's is going on. I live in Texas and I just had a spinal cord stimulator put in. I had my first back surgery in 1997 and I just turned 40. As far as doctors-do you have a pain management doctor? Keep making new appts until you find the doctors who will listen and help. I started with the doctors that won awards for being one of the best doctors in America etc., everytime I go to one doctor I get their opinion on other specialists and who they would reccomend. I was told on my 39th birthday that I would just have to live with the pain and cried for days. Finally I really got serious and started to put together a team of doctors that really wanted to help. I have several specialists that treat separate issues and a regular doctor that manages everything and helps me look at the big picture. Some days I don't think I can keep doing it or go to another appt. or have another test, but then I look at my options and I pick myself up and go anyway. Some of my bigger issues are getting extended family members to understand what living with chronic pain is like and how it affects every aspect of your life.
God bless, and I would be happy to help in anyway I can.

New Member

Date Joined Mar 2011
Total Posts : 3
   Posted 4/5/2011 7:17 AM (GMT -6)   
Bonnie I am who your looking for come talk to me its tuesday 820am april5th 2011 will wait here for you come talk.           Whitetigger

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 4/5/2011 7:46 AM (GMT -6)   


 Hello Navytigger!

      You're responce to Bonnie is about 2.5yrs too late. wink This is an old thread.

          We welcome you to stay and visit with us here on the CP forum, and suggest that you go to the home chronic pain forum page and start a new topic and introduce yourself to the members.

  We will be happy to welcome you there. You will get much better exposure there and the members would love to meet you.

      SE wink       

"The clock is running. Make the most of today. Time waits for no man. Yesterday is history. Tomorrow is a mystery. Today is a gift. That's why it is called the present."

Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 4/5/2011 9:54 AM (GMT -6)   

   Good morning White Tiger!

     Welcome to the Healing Well community. :-)   My name is Dani and it is very nice to meet you. We are always glad to welcome new members to the group. We have many caring and compassionate members here.

     I am sorry you too have nerve damage and spinal cord injury. That is very hard to manage even under the best of circumstance. Unfortunately you have replied to a topic that is very old. The member who posted this originally, did so in 2008. We do have many current members who are dealing with the same problems. If you start a new "introduction" about yourself and what has happened in your life.. you will not only find members with he same medical problems, but you will also give us a chance to get to know you better. Follow this link to get to the "Main Chronic Pain" forum page. Where all the current topics are.


     It is very nice to meet you and look forward to knowing you a bit better :-)


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator

Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 4/5/2011 10:09 AM (GMT -6)   


  Here is the link you asked for in chat


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

Chronic Pain Moderator
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