Need Help - TN with MS
 

BACKGROUND:
My wife, age 60, has active TN on the right side of her face. Classified at STN as she has Multiple Sclerosis (MS) that started over 35 years ago.

TN started in 1988 on the left side, long story made short, in 1994 she had successful surgery to severe 2/3 of her TN nerve on the left side. Surgery followed 6 years of increasing Tegretol etc., multiple peripheral nerve sections, one successful glycerol injection (10 mos relief) and one failed/disaster glycerol injection. Major surgery/nerve section followed multiple episodes of passing out from excruciating prolonged attacks. MVD is NOT an option with MS.

2004 tics started on RIGHT side. Similar lightning bolts as on the left but not excruciating. Tics controlled with Carbatrol + Gabapentin (Neurontin) app. 8 months. Late 2004 she was able to stop the meds with no pain. October 2006, the pain returned and controlled with 400 MG Carbatrol until Oct. 2010. Starting last Oct. meds increased multiple times as the pain broke-through. Currently taking 700 MG Carbatrol + 900 MG Neurontin. Tics stopped about 3 days ago. NOTE: Neurologist believes UTIs (urinary tract infections) may be exacerbating the TICS. Completed latest round of antibiotics yesterday. Neuro is with Jacobs Institute of Neurology in Buffalo NY - highly respected in the treatment of MS.

NOTE that her neuro and primary drs would prefer more Neurontin with less Carbatrol as the Carbatrol may be the cause of her low blood serum sodium levels. She is still adjusting to the increased meds with significant fatigue...........

Surgical Options:
With increased frequency of break-throughs, increased meds/side-effects and increased fear, it's time to consider surgical options.

One local (Buffalo NY) neurosurgeon in 2008 recommended balloon compression as his first choice, gama if the balloon failed, and last option partially cutting the nerve. As of 2008, he had performed app. 40-50 balloon compressions.

Based on my research it appears Balloon Compression is strong option. I'm NOT excited about the gama option. If successful, balloon compression might last a max of 5 years when associated with MS.

Partially cutting TN nerve root near brain stem (done in '94 left side) - need to weight potential benefits/risks. In addition to typical risks of brain surgery, AD seems to be the greatest concern. Does anyone has statistics on the risk of serve AD from such surgery?

MAJOR QUESTION - is nerve section surgery inevitable considering balloon compression is temporary and likelihood of TN continuing to progress? If so, why not do it now?

SURGEON RECOMMENDATIONS???
Any recommendation of neurosurgeons with successful experience treating TN in patients with MS.

Surgeon who performed 1994 surgery is in Wash. DC where we previously lived. I believe he is still practicing; however, he is NOT really a TN/MS guru. At least not recognized as such.

Sorry for the long post. Maybe I should break it into multiple topics?

Guess I asked too many questions. No replies. :(

Mr. Bill, speaking for myself, I don't have any experience with STN from MS. I do recall reading a study which was posted on the TNA's website(I think) regarding success rates for balloon compression surgery. Here is a link to a page with a lot of study's which reference it and other types of interventions http://www.fpa-support.org/?s=balloon+compression If you haven't visited this site, its an excellent resource for good information regarding all things TN. There is also a study on there for TN and MS, so if you haven't already read it, its probably an informative read. Also, the book titled "Striking Back" is another excellent resource. Its available on their website and may be available through your local library as well. I haven't had any surgical interventions so I can't speak to them with any personal knowledge. Given that its the weekend, some of the others maybe too busy to stop in and post. Hopefully they'll share their knowledge and experience where they can. Hang in there.

Thanks for the reply. I have read the item you mentioned at the TNA website. I used the site frequently. Unfortunately it is very difficult to find statistical info relating specifically to Balloon Compressions and other procedures for TN/MS. I have listed to a couple of talks presented at the 8th Annual FPA/TNA Conference that imply some of the info in Striking Back is already outdated. I have a query into one of the authors, Dr. Casey, and he has said he will get back to us very soon. Fingers Crossed.

Dear Mr Bill,
While I can offer no other help, I just wanted to say that I was moved by your wife's story, and sincerely hope that you will find answers to your questions. There is another site called "living with TN" that has many, many members. You might want to post your questions there as well.
:hug:
Lily