Join Date: Sep 2010
Location: Normal, IL, USA
Re: scar tissue
Sorry to see you so disappointed. Constant pain sucks, to put it mildly. I was bed-ridden for a year and a half with constant, severe head pain, and I really don't know how I survived it without losing my mind, but I guess it shows how the human body (and mind) are incredibly resilient. My marriage suffered permanently, but my illness just exacerbated what had already been unresolved tensions. But I digress...
I recommend getting a second opinion from another surgeon (make sure you see a neurosurgeon, and bring all your CTs, X-Rays, and MRIs.) If the second doctor says you're not a candidate for surgery to remove the scar tissue, it's probably best that you accept it, and then start asking what can be done to improve your quality of life. You may be a candidate for ablative procedures like rhizotomy (removal of the nerve root,) cryosurgery, or radio-frequency thermocoagulation (the last two are methods of destroying the nerve root tissues.) However, you should realize that ALL ablative procedures run the risk of creating traumatic neuromas, which can be just as painful and/or may cause even larger areas of the body to be affected.
There are many medications that are worth trying, and in the coversations I've had with the dozens of neuralgia sufferers I've talked to over the past few years, Lyrica, Keppra, Tegretol, Trileptal, Cymbalta, and Klonopin (usually in combinations wih other meds, including Neurontin) seem to be some of the most effective drugs for reducing nerve pain. You should also consider using narcotics to help you cope, though they obviously have risks associated with them. I've been on many of them, and have found the fentanyl patch to be very helpful (many people find that the generic patches adhere to the skin better than the brand name Duragesic patches, and they are usually much less expensive.) The patches provide a more constant dosage of medication than oral narcotics, but you can use the oral meds for "break-through" pain once you've found the right doses of the other meds to give reasonable relief. There are even prescription pain "lollipops" that provide a very fast delivery of fentanyl to your bloodstream.
You already know that you are a candidate for a nerve stimulator, so I would recommend you discuss that with your neurosurgeon, as well as other options like an intrathecal pump, brain stimulation (deep brain stimulation is the riskiest, but there are also areas of the brain that can be stimulated with less risk, including the periaquaductal grey area, the anterior cingulate, and the motor cortex - which despite the name, also contains sensory nerve fibers.) The peripheral nerve stimulator (also called a spinal column stimulator, depending on the placement of the electrodes) is the least risky, and the trial is done on an outpatient basis.
For what it's worth, Jerry Lewis credited his neve stimulator with giving him his life back, so yes, you have a good chance at leading a normal or nearly-normal life again. There's no doubt that nerve pain can be very difficult to treat successfully, but almost every neuralgia sufferer can obtain significant relief. Much of your well-being is in your own hands, so don't be afraid to advocate fiercely and persistently (but tactfully) for your best possible quality of life. The best outcome usually results from a relationship of trust and frank communication with your doctor(s). If your doctor is not willing to accept you as a contributing member to your own health treatment team, fire your doctor and find another. It's unfortunate, but there are too many doctors who will not consider a patient's informed input, but here's a dirty secret: many patients know MORE about their specific illness than their doctor does, particularly if the doctor is not a specialist in that patient's illness. Do EVERYTHING you can to learn as much as your brain will absorb about your condition, and then find a doctor who will listen to you and give consideration to your comments and suggestions.
Finally, the first step to coping with serious illness is making the decision that you WILL do everything you can to cope. Then make a plan to do everything you can to live a full and active life. Find a support group (or even a close friend) to help you stick to your plan, and DO IT. You are not alone, and you deserve to live life as free from pain as possible, so don't give up.
I almost forgot (and I'm too lazy to re-edit these comments) - when you go for your second opinion, bring a written list of questions and concerns with you, along with a pad of paper and pen or pencil to write down your doctor's comments. When you make the appointment to see the doctor for a second opinion, make sure you tell the person scheduling the appointment that you have a few questions written down for the doctor, and ask that the appointment be scheduled with enough time for your doctor to discuss these with you. You do not want your appointment to be rushed; this is too important for you.
Oh, and really finally (honestly,) do consider seeing a pain management specialist, preferably one in a pain clinic setting - ideally one associated with a major teaching hospital. The field of pain management is growing rapidly, with advances and new techniques happening all the time. It can be very helpful to be connected with the the "leading edge" researchers.
Best of luck, and please keep us updated on your progress.
[QUOTE=mce;4638481]Hey, Went to the surgeon today, no operation to fix the problem, which totally shattered me, as I really thought that an op would fix everything.......he has suggested another nerve conduction test (pain plus), then as you thought a nerve stimulater, after another needle in back, which didnt work last time....im really at a loss, im not a sook and i have worked my but off before this happened....now I just dont know anymore..i dont think i have cried so much in my life....pain is such a hard thing to accept all the time....im really grateful for you info, so thank you i will try all other alternatives......but tell me is there some sort of normal life with this ?[/QUOTE]