Thanks to all for the warm welcomes, prayers and well wishes. Does anyone know if you can have another MVD done after you've had a LINAC (Linear Accelerator similar to Gamma Knife) procedure done? I have had 2 MVD's already, first in '98 with almost 9 years free from pain. The 5th CN was being compressed by 2 veins and 1 artery. Then I had a repeat MVD in '06 when TN reared it's ugly head again. That surgery revealed the nerve was tethered down by scar tisue, and the "paddie" supporting the artery had slipped out of place. Relief the second time lasted only about 9 months and then the LINAC procedure was unsuccessful. All of the meds I have tried have caused horriblle side effects, even changing my personality and ending my marriage. And I was never even able to get to a therapeutic dosage on any of them. Keppra made me so paranoid that I had a security system put in. Lamotrigine caused horrible knee pains & swelling that I sold my house and moved to a one level that I hate. I have no problems with my knees since I stopped taking the med. When I tell providers about side effects, they look at me like I am crazy. Right now I am surviving on Oxycotin 40/day, but it only dulls the worst of the constant pain. The last few months are leading me to desparation.
Oh my....Do you have insurance?
I believe there are a few here that have had Gamma - then MVD -- Lower success rate - but can see improvement - sometimes success. I've also known somebody with 3 MVDs
I would recommend an email consultation / sending your records : Dr. Ken Casey = Trent Michigan
He did my MVD -- is one of the old timers in MVD - and complicated cases are sent to him often.
I flew from MO to MI to get it done and there were two compressions. Realizing that I might have to do it again someday, Dr. Casey is my #1 pick and Dr. Lim at John Hopkins is my #2
I've been on here since 2010 researching - and I hope you can find answers.
Have you read the book "Striking Back" by Dr. Ken Casey?
you have had a rough road - and please keep advocating for yourself and learning what you can.
Do you have a local support group for TN?
Have you tried Lidocaine Patches -- helped me lower my meds by putting on face -- soothes for many up to 12 hrs.
Keep Posting!
Thanks. I have Kaiser Senior Advantage (Medicare) since I had to go on disability when I could no longer do my job. I had my first MVD in Pittsburgh by Dr. Peter Janetta (the pioneer of the MVD procedure). But by the time I needed the second one, I had moved to Oregon and had Kaiser insurance. They did not have anyone who had ever done a repeat MVD and so I got special dispensation to go to the Cleveland Clinic to Dr. Joung Lee (they accepted my insurance then). Now that I am on Medicare....I don't know where I could go. The big hospital system here is OHSU, but I don't know about their neuro department. My pain is mostly in the left ophthalmic branch of the nerve and it feels like I am being repeatedly stabbed in the inner corner of my eye. The second prominent area of pain is where #12 tooth used to be. I had the tooth pulled years ago before the TN diagnosis. But it feels like a hot poker is being shoved into the tooth root. So I don't know where a lidocaine patch would be placed, although even when I have had dental anesthesia for other work on my upper left teeth, I have still felt the neuralgia pain. I can't remember if I read "Striking Back"...but I'll check it out. Thanks for your support.
Kc Dancer Kc said:
Oh my....Do you have iI had my firstnsurance?
I believe there are a few here that have had Gamma - then MVD -- Lower success rate - but can see improvement - sometimes success. I've also known somebody with 3 MVDs
I would recommend an email consultation / sending your records : Dr. Ken Casey = Trent Michigan
He did my MVD -- is one of the old timers in MVD - and complicated cases are sent to him often.
I flew from MO to MI to get it done and there were two compressions. Realizing that I might have to do it again someday, Dr. Casey is my #1 pick and Dr. Lim at John Hopkins is my #2
I've been on here since 2010 researching - and I hope you can find answers.
Have you read the book "Striking Back" by Dr. Ken Casey?
you have had a rough road - and please keep advocating for yourself and learning what you can.
Do you have a local support group for TN?
Have you tried Lidocaine Patches -- helped me lower my meds by putting on face -- soothes for many up to 12 hrs.
Keep Posting!