I was diagnosed with trigeminal neuralgia in April and developed Bell's Palsy in May and have been dealing with both coditions since then. I am on Baclofen, Neurontin, Topomax, Tizinidine, Ultram, Valium, and Valtrex.
My Neurologist said that I have a severe case of trigeminal neuralgia that is not responding to medications at all and referred me to a neuro surgeon. I met with the neuro surgeon who said that my trigeminal neuralgia is viral which is why I also developed Bell's Palsy.
He said that the only procedure that will work for me is Gamma Knife. I am only 42 yrs old.
My neurologist is telling me that they can't do anything else for me and that I need to do what the neuro surgeon suggest. My trigeminal neuralgia and Bell's Palsyare on the left side of my face in all 3 branches.
I would also like to hear any success or failures with Gamma Knife procedures for people in their 40's and anything else you can help me with.
I am new on the board and feel like I am being rushed to make a decision. I am out of work on disabilty through my company and the disabilty comapny wants to know if I am going to have the surgery before making a decision about extending my disabilty.
I think you need a second opinion. Lots of people here have had shingles and other viral issues, but I've never heard a doctor make such a direct link between the two (I had something similar, but not the same thing). I also question whether gamma knife would be a good choice for such a condition, and I worry that it could make things worse. That does happen to lots of people, and the neurosurgeons I saw said destructive procedures like gamma knife were a bad idea, particularly when there are multiple issues going on. Sorry you are being rushed, I think this is a really big decision and I want you to make the right choice. Try searching if you haven't already.
If your TN is associated with a virus, which one is it? Herpes Simplex is not yet recognized unambiguously by most practitioners as a cause of TN. Herpes Zoster in Shingles can cause Post Herpetic Neuralgia. If you have either, I'd think you would have been prescribed an anti-viral agent like Valtrex, which I don't see in your meds list. Neurontin seems to have the best record for managing PHN pain from Shingles. But it can still take weeks to months to drive the Zoster virus back into remission.
In Type I (Typical) TN, Gamma Knife has a recurrence rate for pain of about 50% within three years. I haven't seen reliable stats for ATN pain. GK is also associated with potentially severe side effects in deafferentiation pain for some patients. I recommend that you either consult independently or ask for a referral to discuss RF Rhizotomy for the TN pain, plus other surgical options for the Bell's Palsy.
It may also be appropriate to reconsider the large number of meds you're on, increasing doses on some of them, and eliminating others. A neuro can advise you on the tradeoffs. I suspect you may be having some drug interaction effects.
Also suggest you do a search in our site search window at top right, for "palsy". You'll find several other patients who have dealt with the combination you are dealing with.
There are lots of things going on in your medical profile. I suppose it's possible that Neurontin might be prescribed for bipolar disorder, since it has a generally quieting effect on the central nervous system, particularly when combined with Valium. But normally Neurontin is regarded as primarily an anti-seizure med used off-label for the treatment of trigeminal neuralgia, PHN pain, and neuropathy.
I don't want to give you advice that may be flat-out wrong. Thus it occurs to me that your best interests might be served by doing a consult with another neurologist as a sort of "sanity check" before you seriously entertain Gamma Knife as a potential solution. If you're interested in reading the practice standard for GK, send me mail at ■■■■■■■■■■■■■■■■■■■, and I'll forward the standard. It's copyrighted so I can't "publish" it here.
I would strongly recommend a second opinion with a neuro that is more familiar with TN. as Red said, antiviral treatment & recovery can take weeks or months, and I would hate for you to rush into another invasive treatment that may worsen things, & not wait to see about the efficacy of the Valtrex. just my two cents,. I agree with KC that your best option is research research research!
I agree with Crysalv . . . just make sure you also get checked for Lyme co-infections as well. There is no definitive test so a negative test does not necessarily mean that Lyme disease is not present. A Lyme specialist needs to determine the diagnosis not just a lab test. My western blot test was a negative overall but showed some presence. I was tested positive with Rickettsia which is a Lyme co-infection and since treatment, I have been lowering my Tegretol dose. Certainly not a great diagnosis either but it can be treated.