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    Old 01-17-2012, 10:29 AM   #1
    pebblebeach2
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    Pain management Chronic Intractable Pain

    Hi all. I saw my neurologist this morning. Here is the outcome.

    First of all I have been thru a lot of spine surgeries on the neck and lumbar region. Harrington rods in Cervical/Thoracic and Lumbar areas.

    The last MRI showed a narrowing of the spinal cord at c6/7 and myelomalacia.

    I have moderate to severe pain in the neck region and radiating to the shoulrds left and right. The left side the worse of it all.

    I also have low back problems. Numbness of the left leg from the knee down.

    An EMG showed severe nerve damage in the neck; lumbar area; severe arthritis and neuropathy from the diabetes.

    I was initally put on Oxycodone and tizanidine. The oxycodone was 5 mg and I took 1-2 tablets at bedtime. It really didn't do anything for me.

    the neurosurgeon for various reasons is skeptical about surgery. extremely dnagerous on me.

    so the neurologist put me on Oxycodone but increasing the medication from 1-2 tablets at bedtime to taking 2 tablets 3 times a day for a total of 6.

    He gave me a script for a muscle relaxant but its not covered by insurance so trying to see what is covered.

    But I just noticed the medication label on the oxycodone and it says: "Chronic Intractable Pain."

    From what i read it seems to indicate that I am out of options for treatment. The normal treatment options wont work for me.

    Does anyone have any more input on chronic intractable pain?

    Any concerns about being on 6 tablets of oxycodone? Addiction?

    Thanks for any input

     
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    Old 01-17-2012, 05:04 PM   #2
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    Re: Pain management Chronic Intractable Pain

    I'm sorry. I would have thought that maybe a surgery like what Webdozer and I had(laminoplasty where they rebuild the bone over the back of the spine to make a larger spinal canal) would have been an option as no fusion is involved. If I could adive anything, it would be to find a neurosurgeon who does the laminoplasty and at least ask for an opinion. Not many do them but I know the neurosurgery dept at New York Medical Center/Presbyterian does do it.

    Other than that, you need to find the very best pain management doc you can find. They say that you don't become addicted when you are in constant "real" pain....addiction is when you become psychologically dependent and the pain is not real...or not as real and as bad as you think it is. So don't even worry about it. You have real pain...you take what you need to take.

    The secret to my controlling my chronic pain has been meditation. I have found it really helps. Get the drugs and get it under control and then find someone who can teach you meditation. And consider a therapist who works with chronic pain patients to help them get and keep control of the pain...it helps too.

    There are tools out there to use for chronic pain.....I guess, regretably, it is time to learn about them and use them.

    Again, I'm sorry it has come to this.

    hugs..........Jenny

     
    Old 01-17-2012, 05:19 PM   #3
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    Re: Pain management Chronic Intractable Pain

    Jenny:

    When I saw my neurosurgeon last year he really didn't want to touch me surgically. The only way he felt that he could get to the area in the cervical area was to go thru the sternum to correct the area. He felt it would be a "nightmare" to even tough me and recovery I hate to think what recovery would be like from the surgery.

    I live in south jersey and have consulted at top hospitals in Philadelphia.

    I am going to see the surgeon again in april. But I think that he wont and no one else wants to even touch me at this point. It appears that unless I am bedridden or unable to function at all that may be the only way they would even consider touching me. The surgeon wanted me to do pool therapy; exercises etc. Then see if things have progressed. I thinkthey have progressed in that I feel a great strain on my arms; sometimes a weak feeling; there has been loss of balance; I also at times can't stand completely erect. I some times walk flexed forward unable to maintain a normal posture.

    The doctor I saw today is a neurologist. I think he is doing what needs to be done from a medication stand point so that I do cope with the pain.

    I do see a therapist to talk about the health issues and the impact on my life. She is not a therapist that is trained in "pain" per se. But I really needed someone to talk to to see how to deal with the health issues. I was overwhelmed and feel talking has eased the burden.

    Am I worried about the long term? I'd be lying if I said no. Not sure what els to say at this point. I hope the oxycodone ; the increased meds; will give me some relief. I barely sleep and have not slept a full night in I cant even tell you how long.

    Will write more as time goes on and how the meds are working.

    Thanks for the input,


    Allan

     
    Old 01-17-2012, 10:36 PM   #4
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    Re: Pain management Chronic Intractable Pain

    Are you taking something like Neurontin or Lyrica for nerve pain?

    Have you consulted with an orthopedic spine surgeon? I imagine you have if you went to the Rothman Institute....

     
    Old 01-18-2012, 01:33 AM   #5
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    Re: Pain management Chronic Intractable Pain

    Currently I am seeing a Neurosurgeon and have been using him for several years. I am scheduled to see him again in April.

    I have over the years consulted with both Orthopedic and Neurosurgeons. I did see an orthopedist at the Rothman Institute before the latest issues arose. I am considering looking for an orthopedic opinion with another group.

    For me personally, I find the best orthopedists that I have seen over the years can be found in New York. They are by far the best; such as Hospital for Special Surgery or at NYU Medical Center. I was not happy with the orthopedists that I have seen in this area.

    As to Neurontin, I was on it several years ago. the first time i was taking I think it was 3600 mg per day and had a reaction to taking so much of it and didn't do much for the pain. Then I tried it again but at a much lower dosage and while I didn't have a reaction to it, it still didn't do anything for me.

    I was never on Lyrica. But I was on recently Tizanidine which I don't think did much. My doctor is calling in to the pharmacy a new script for a different medication. Not sure what the medications is at this point. If it is covered uner my health plan whatever the med is I will be picking it up later today.

    Will see what the new dosage of Oxycodone and the new muscle relaxant does for me........... Time only will tell at this point.

     
    Old 01-18-2012, 02:29 AM   #6
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    Re: Pain management Chronic Intractable Pain

    Alan,

    Sorry that you are having such pain. Jenny is absolutely right about the difference between using medication for pain management and developing physical dependence versus psychological dependence.

    It is mindset too. I was taking 40 milligrams of oxycodone a day for the burning pain in my arms. I was really afraid that it would be hard or impossible to come off. When I needed them, I took them with great trepidation. Suffice to say, December 21st I had the ACDF C5-C7 and had my last pain pill Jan 2. I had a couple of days of muscle aches, goosebumps and cramps and that was it. I was glad to be off them. I had not mental cravings. In fact, I was walking on sunshine to be off them. To be honest, before I got off them I wasn't sure if I was going to have to go to a rehab or not. We've all heard the horror stories.

    Unfortunately, I was at a friend's house for dinner this past Saturday. I was seated on a kitchen chair and decided to lean back to rest my neck. Bad idea. I tipped over backward. Luckily the Christmas tree behind me was still up and that cushioned the fall. Still, the pain was quite medievel. I only got 3 hours sleep that night. I finally broke down and took a pain pill Sunday and Monday. I did not take one Tuesday and I don't imagine I'll need them anymore. Glad my pain is subsiding.

    By the way, I'm not completely pain free. However, the surgery helped lessen the pain to a place I can reconcile with it, live and enjoy life. To everything there is a season, turn, turn. When I needed them to function, I am glad they were available. I don't need them now. I am glad I was able to jettison them. They can be a godsend, but like everything in this universe there is no free ride. Getting off them did require some self-discipline and I'm not really out of the woods yet. I have to be careful not to do anything to injure myself.

    Jenny is definitely a power of example that it is possible to live with some degree of pain without resorting to pain medication. However, we need not be martyrs. I think being honest with yourself and talking to a lot of people can really help a lot. Addictions thrive in secrecy. Be honest with yourself and others. Believe in yourself and in your ability to get off them should you no longer need them. Just as there are millions upon millions of ex smokers, there are millions upon millions who got off pain meds. We tend to hear the horror stories, and right now the press is concentrating on exclusively on them. Yes, they are powerfully addicting but the benefits outweigh the risks when used as prescribed as for moderate to severe pain. They can certainly enhance the quality of life when needed. Also, there is a lot of pain management advocacy on the web that can be utilized to allay your fears. There is no sense in suffering needlessly.

    Pain can be draining physically and emotionally. You have a right to effective pain management. If you need them, you need them. Living with moderate to extreme pain is NOT acceptable, and it is clinically indicated that such pain be treated effectively.

    Now, for myself, I was really elated and walking on sunshine to be mostly pain free. My horizons seem so much brighter. I hope it lasts, but this fall Saturday really has aggravated things. It's annoying. I will see the doc for an xray. I imagine everything is still in place and that I just wrenched my neck. Murphy's law I suppose

     
    Old 01-18-2012, 05:33 AM   #7
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    Re: Pain management Chronic Intractable Pain

    Thanks all for the response so far.

    As I mentioned before I am on Oxycodone 5 mg. tablets.

    The doctor originally put me on Tizanidine 2 mg. tablets; but I changed insurance companies and it was no longer covered.

    So the doctor is trying a new medication. He has me on BACLOFEN 10 mg. tablets. I am to take 1/2 tablet twice a day.

    Anyone ever been on Baclofen? If so, how did you find it work for you? Any input would be appreciated.

    I'll keep you posted on how the new regimen of medications are working for me.

    Allan

     
    Old 01-18-2012, 09:03 AM   #8
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    Re: Pain management Chronic Intractable Pain

    I have severe cervical and lumbar spinal stenosis ,I had a cervical fusion in 2002 but the stenosis has since returned only worse, I have not seen a doctor for a year because of lack of insurance so I don't know what the damage is now, for about a year my right thigh goes numb on a daily basis and sometimes it stays that way all day, I have weakness in my legs with the left leg being the worse, I have knee buckling everyday and stiffness in the neck ,arm and legs everyday , my vertigo is the worse that it has ever been with things seeming to be moving around me, my balance is so bad ,that I almost fall over when I am standing still, I am having stabbing pains in my face ,rining in the ears , I have restless leg syndrome for years ,my left leg feels heavy, the tip of my index finger goes numb, pins and needles all over the body including the tongue ,left foot goes numb, tips of the fingers numb,fatigue so bad that I can't do anything any more, if I scratch my face it hurts for about an hour ,my skin is so sensitive I can't carry a shoulder bag any more , itching all over the body,sometimes a warm feeling across my chest and in my legs ,of course pain is daily because of the stenosis I have looked the web over and my symptoms mimic so many other condition, what I'am asking is does anybody else with spinal stenosis experience these symptoms
    thanks for your replies

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    Old 01-18-2012, 09:33 AM   #9
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    Re: Pain management Chronic Intractable Pain

    Alan...I started warm pool PT this past May and it has changed my life. You really should find a place and do it. You can move so much better in the water and being warm(92*+) the muscles don't get cold and cramp or spasm. I would never believe it if I hadn't done it myself. Worth the time and the money for sure.

    I don't take any pain meds due to allergies(as I have explained) but that doesn't mean I'm not hurting or don't get really miserable at times. I am! I throw amazing "pity parties" for myself at times. And then I keep looking for ways to make it better.

    I would give up on ortho spine surgeons and try neurosurgeons. I know the neurosurgeons at NYU do laminoplasties. I know your rods may be in the way but even a laminectomy would help in your neck and they should be able to get in around the rods to do that.

    Therapy helps a lot and is very under utilized. When you are tired of dumping your misery on others, it really helps to have a particular person to dump it on...and then they help you cope.

    I've done acupuncture and homeopathy...didn't work after a while.

    Like you, both my legs are numb right now to the point where I can no longer feel the gas pedal when I drive. My neurosurgeon is so hesitant to operate on me but I think he'll be doing not 1 but 2 more surgeries if I can get him to. Lumbar and cervical. I know you have the major kidney problems but a really good doc at a medical center that deals with complicated patients should be able to help you. It's finding someone who is willing to help you. They are few and far between.

    But in the meantime, take your pain meds and feel some relief. And do find a warm pool PT facility. They have to be certified to do pool PT and the pool has to be tested regularly and meet the 92* threshold to be certified. We have 2 rehab hospitals here who have them and then I found a nursing home with one that offers PT and open pool times for the public. It is 3-4 feet deep and just for walking and exercising and even has a pneumatic chair if you can't do the stairs. I've walked in the water with amputees, a blind woman, stroke survivors, a woman with transverse myelitis....all sorts of problems. It is really great. Improved my range of motion and stamina and has helped to relieve my pain. Just floating from a pool "noodle" is like doing traction in that it stretches the spine out. And they frequently put on the massage jets just to make it even nicer!

    I'm still looking for more and more ways to help myself and I'll pass along whatever I find.

    Jenny

     
    Old 01-18-2012, 11:18 AM   #10
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    Re: Pain management Chronic Intractable Pain

    Jenny:

    Just briefly. I have done pool therapy thru physical therapy and have kept doing it on my own for the past 3 1/2 years. The pool while it is not 92 degrees is usually 82-84 degrees. I try to do the pool 4-5 times a week sometimes more if I can fit it in to the day.

    While in the water I do feel a sense of some relief. But within a short period of time after I get out the pool and back to the regular routine out of the water, I go back to the way I had been feeling.

    I have looked into orthopedics/neurosurgerons between Jefferson University Hosptial and Hospital of University of Pennsylvania. Both top hospitals within Philadelphia.

    It is tough for me to get into NY at this point. I will see what I can find that is easier for me. I see my neurosurgeon but not till April. I will research the laminoplasty and approach it to see if it is an option for me.

    Started taking Baclofen this morning. Been drowsy most of the day. Will see how I do on the meds at this point.

    More later.

     
    Old 01-18-2012, 03:14 PM   #11
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    Re: Pain management Chronic Intractable Pain

    capatga:

    I read your post about stenosis. I have had in the past and currently have stenosis in the neck and low back.

    Some of my symptoms when the stenosis was in the neck was neck pain and radiatiing pain into the arms.

    As to the low back, yes I have balance problems and radiating pain down the leg as well.

    I had been thru surgery for the stenosis which alleviated the symptoms; but unfortuately my spine conditiosn came back.

    Some of the symptoms you have which include the facial area, I am not sure if that is due to the stenosis or not. I dont recall if I ever saw that being a symptom. I agree that it may be due to some other condtion then the stenosis.

    You really need to see a doctor to addres the issues and see what is related to the stenosis and what the other symptoms may be caused by.

    I understand that there is an issue of insurance. I am not sure what to recommend. Where do you live? There may be some way of getting to see a doctor. YOu are not the only one without insurance and hopefully you can find some source of treatment from some where.,

     
    Old 01-18-2012, 03:37 PM   #12
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    Re: Pain management Chronic Intractable Pain

    Quote:
    Originally Posted by pebblebeach2 View Post
    capatga:

    I read your post about stenosis. I have had in the past and currently have stenosis in the neck and low back.

    Some of my symptoms when the stenosis was in the neck was neck pain and radiatiing pain into the arms.

    As to the low back, yes I have balance problems and radiating pain down the leg as well.

    I had been thru surgery for the stenosis which alleviated the symptoms; but unfortuately my spine conditiosn came back.

    Some of the symptoms you have which include the facial area, I am not sure if that is due to the stenosis or not. I dont recall if I ever saw that being a symptom. I agree that it may be due to some other condtion then the stenosis.

    You really need to see a doctor to addres the issues and see what is related to the stenosis and what the other symptoms may be caused by.

    I understand that there is an issue of insurance. I am not sure what to recommend. Where do you live? There may be some way of getting to see a doctor. YOu are not the only one without insurance and hopefully you can find some source of treatment from some where.,
    thanks so much for replying to my post, I will have medicare as of feb 01, I have a neuro , I want to delve further and find out the cause of some other symptoms that I thought were not related to my stenosis ,such as the facial issues and I can't see my present neuro doing that, I will probably go back to her because she does take medicare, and maybe we get get to the bottom of these other symptoms, spinal stenosis does damage nerves and cause weird symptoms , I just talked to someone on the MS board and it seems that I was in a panic and looking up symptoms on the web , the last thing I want is to become hysterical , I never had a lot of neck pain with my cervical stenosis until it was so bad that I had to have surgery, my back is very paingul and the pain is so bad sometimes I scream out because it is like a electrical shock , only we know what stenosis pain is like, and we also notice when a symptom is new , how do you manage your pain , what meds do you take, thanks

     
    Old 01-18-2012, 04:52 PM   #13
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    Re: Pain management Chronic Intractable Pain

    Good luck with the neuro.

    I have tried lots of meds over the years without a great deal of success. I have other issues besides stenosis. I have cord atrophy; cord compression in the neck; severe nerve damage in the neck; and low back and arthritis.

    I have had a spinal cord stimulator that was implanted and had it for 5 years but had it taken out since it was not working.

    I just started on a regime of Oxycodone taking 5 mg tablets. 2 tablets 3 times per day maximum plus Baclofen a muscle relaxant which I just started on this regimen today. So cant tell you much as to whether it is effective or not.

    Please let me know how you are doing. Be well in the meantime.

    Allan

     
    Old 01-18-2012, 05:42 PM   #14
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    Re: Pain management Chronic Intractable Pain

    Quote:
    Originally Posted by pebblebeach2 View Post
    Good luck with the neuro.

    I have tried lots of meds over the years without a great deal of success. I have other issues besides stenosis. I have cord atrophy; cord compression in the neck; severe nerve damage in the neck; and low back and arthritis.

    I have had a spinal cord stimulator that was implanted and had it for 5 years but had it taken out since it was not working.

    I just started on a regime of Oxycodone taking 5 mg tablets. 2 tablets 3 times per day maximum plus Baclofen a muscle relaxant which I just started on this regimen today. So cant tell you much as to whether it is effective or not.

    Please let me know how you are doing. Be well in the meantime.

    Allan
    I noticed your mention of starting baclofen. I started taking it probably 4 months ago & I have to say it's the best muscle relaxer I have taken. It made me sleepy at first but that slacked off & now it just relaxes me. My ns surgeon gave me methocarbamol 750 mg to take after surgery. have any of ya'll taken this?I can't tell if it's working or not. He also called out neurontin today because I started having a lot of pain in my shoulder & arm?. hope ya'll are doing well!

     
    Old 01-18-2012, 06:35 PM   #15
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    Re: Pain management Chronic Intractable Pain

    Hi. No I have never been on Methocarbomol and not sure if I have ever heard of that medication either.
    Neurontin I was on several years ago, actually twice. The first time I was on a high dosage of 3600 mg if I remember correctly. I did not have any success with it. It done nothing for me. But I did have a problem with it in that at one point I had a conversation with someone and I don't remember the conversation. In fact we had an argument and dont remember anything about it. I am sure the problem was caused by the medication.

    The second time I was on it I was on a low dosage. I think it was 300 mg. And at a low dosage no problems like the first time but as to pain relief it did nothing for me.

    I started the baclofen just today. I took 1/2 a tablet this morning and 1/2 a table this evening. For now yes it is making me very sleepy. Time will tell what it does to me in the future.

     
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