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A couple of ?'s

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    A couple of ?'s

    It's been quite a while since I've visited this site. It's good to be back.

    I am going to a neurologist next week. I haven't been back to see my neurosurgeon since my last surgery (tethered cord release, 2006) since he is in a different town. But I have been expereincing a lot of nerve pain latley often requiring multiple doses of neurontin (used as perscribed). Before I expereinced nerve pain maybe 1-2 times a month and when it was bad enough to take neurontin one dose a day was the most I needed.

    Is it just a normal part of life for nerve pain to increase?

    I am still struggling with my bp and am hoping that this neurologist might have some suggestions or can at least point me to someone who can help. I hope and pray there is a bp that works for me that doesn't require a colostomy. I have posted multiple questions here but so far nothing is working and I am more confused than ever about what to do or where to get help.

    I am fully ambulatory with only very mild nerve damage from the waist down. I seem to have worsened balance since the nerve damage. Can such nerve damage cause balance problems??

    Laslty, although my surgery was almost 3 years ago my scar remains very itchy at times. Does anybody else have this problem? Any suggestions of what I can do to get some relief?

    While whatever has caused your increase in nerve pain may also be contributing to your balance problems, I wonder if the increased dose of neurontin might not be the culprit. Although the use of medications can be extremely helpful, it can sometimes mean having to choose between one bag of problems and another. Also, perhaps if you took the neurontin on a regular schedule, your body could become acclimated to the dose required to relieve the nerve pain, and a daily schedule at a relatively lower dose would mean you could avoid having days that required relatively higher doses. Just a thought, from somebody who also has nerve pain and uses neurontin.

    About the itchy scar. Been there and done that. I tend to get what is called hypertrophic scar tissue, basically it just means you develop excessive scar tissue, my guess is that you do too???? If your scar is not yet white and flat, but still pink or red and raised, then I would say yes, and the preferable way (I was told) to deal with these is cortisone injections into them 2-3 times the first year. Okay, a little late for that, but for future reference. They can still do them now, but the success rate is not so certain. I had them done later before when I first found out though, the itching was driving me nuts, and all it took was the doctor injecting the scar one time and the itching problem was permanently resolved. A topical cortisone or other steroid type cream might help too, but you would need to be more diligent about applying it.


      Thank you for the advice. Although I was born with the tethered cord I only started having symptoms over the last few years. They progresseivly got worse until my second surgery in 2006 so really I still feel very new to this world of nerve impairments.

      I will include questions about taking neurontin on my list of questions. I try not to take a lot of meds so I only take nerontin when the pain interferes with my life.

      My scar is not really red but it is anything but flat! It wasn't flat the first time either but I did not experince the itching until the second surgery when they used steri strips to close the incision. I told the doc immediatly when I first woke up it itches I'm allergic to the adhesive and he didn't believe me. I guess at least now I know my adhesive allergies include steri strips. I hope the cortisone works!!



        I agree that it is not usually customary to take neurontin on an as needed basis, but is usually given 3x daily. I know people who get relief from even small doses as 100mg 3x daily, but everyone is different.
        I have not heard of steroid injections. Some people get relief and scar reduction from using vitamin E oil but its usually used pretty soon after surgery. There are some scar reduction products over the counter but I don't think they help with itching.

        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


          Is there a medication that helps specifically with nerve pain that can be taken on an as needed basis? (tylenol, advil, motrin, etc. don' t help at all).

          I only take 100mg of neurontin and didn't need more than one dose a day until recently so I apperently either don't have that much pain (I have like 0 pain tolerance) or am sensitive to neurontin.


            I find that nerve pain increases in the winter months. When it starts to get cold, it gets worse. In the summer I can lower my neurontin dosage because it is not needed so much. It must be tapered up and down, and it requires a few weeks for it to really take effect, so you cant take it like you would an aspirin or the like on an as needed basis. Good luck with your appointment.
            Anything worth doing, is worth doing to excess


              i know that neuronin is not supposed to work on as needed drug, and that a blood level is needed, however i am not sure if that is really true,
              i know a coupe times in the last 3 or 4 years whew i was having extreme pain that i couldnt mange i dug through my bag of old meds and found some 800 and 600 neurotin tablets. i took a 600 tablet and it worked,
              i did this again recently 2 weeks ago i couldnt manage my pain, i was taking over double and onto triple the fentora dose , which is supposed to be a very fast acting bt med, quicker and much stronger than the fentora lollipos.
              they werent working , i remember the neurontin trick and took a 600 dose. that helped a lot, i than had to change over to opana cause the fentora wasnt working and i was puking, maybe from it, maybe from my sinus infection.
              i found out another trick too that the pm doc said should not work , but it does, i will write about that one latter.
              lyrica never had this effect with me, only neurontin
              cauda equina


                I have to respectfully disagree with the Vitamin E suggestion. Studies have not shown it to have any effectiveness, and up to half (or somewhere around that number, don't quote me on that) will develop an allergy or irritation from the Vitamin E itself. Cosmetic surgeons, whose job is to minimize the formation of scar tissue, recommend against using it.