MS with Trigeminal Neuralgia - Need Help
 

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 600 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?

Please don't shoot me for a duplicate post. I also posted this thread under Trigeminal Neuralgia; however, after 150 views, there have been NO replies/comments.

wow. I have absolutely no answers for you.:( I had a debilitating attack of TN but only once and was prescribed Neurontin for the sx.

You sound as if you have a good idea of what is recommended. Will it work/help? I am no help.

I just wanted to let you know I read your post...

Hi Bill, I am so sorry to hear about your wife horrible pain.:( I don't have TN but touched on the nerve pain, while suffering from Shingles of the facial nerves.:eek: Unbelievably horrible pain.:eek:!!!

I don't know about, so, will not advise on operations. I hope and pray that your Wife finds some, more permenent, relief.

You both are in my prayers..:hug:

SallyC - Thank you for your reply and prayers!!! We all need prayer!!

Aarcyn - Thank you for your reply and thoughts!!

I'm also diagnosed with both MS and Trigeminal Neuralgia. I take Klonopin + Cesamet and had to discontinue many types of birth control methods that threw my hormones out of whack and triggered TN attacks (both typical and atypical type attacks - I'm affected on both sides).

My doctors are aware of these attacks, but they've not suggested surgery. The medications for the most part keep things in check, but I do have occasional breakthrough moments of pain.

You mention that MVD (correct me if I'm wrong with the acronym) isn't available for those with MS. Why is this, or was this one doctor's opinion?

I'm curious myself as this is a symptom that is quite dominant in my own case of MS, unfortunately I don't have much info to offer on the surgery side, only the medications and choices (birth control cessation primarily) which have helped me.

I hope you can find some answers to your questions and concerns. :hug:

You might want to check out the Facial Pain Association, fpa-support.org. There is a lot of info on Trigeminal Neuralgia (TN) on that site. MVD (Micro-vascular Decompression) surgery is used in "typical" TN to move/pad a vein that is wrapped around the trigeminal nerve and rubbing against the nerve. In a large number of TN cases (typical/TN1), the vein irritates the never, causing the facial pain.

With MS, the normal cause of the facial pain is related to plaques in the brain that irritate the trigeminal nerve. An MRI is required to rule out a vein compression, tumors etc. There is a "Trigeminal Protocol MRI" using very thin slices to attempt to see vein compression; however, it is not 100% accurate.

If meds no longer work in controlling the TN, the surgical procedures I listed in my post can be considered. My post is an attempt to find more people with actual experience with Balloon Compression etc. for TN with MS.

I'm so sorry your wife has all those issues with her TM. TM was my first symptom of MS and it is well controlled with Tegretol. Hope you find a solution and you are welcome to join us here for any question or if you just want to vent. Bring your wife in in the conversation also. It's awesaome that a care giver cares enough to come on these forums.

We have the sister MS forum, The Stumble Inn for when people just want to talk about anything or just be silly. We have this MS following us around for a life time, might as well tell a few jokes and find out how to fit MS into our lives. We sure don't want our lives to fit into our MS, we want it the other way around.

TN stinks! Im sorry your wife has it. I will keep you both in my prayers. :hug:

Ohhhhh, I was thinking of only the MVD surgery, as this is the only surgery I had previously seen discussed at length for TN treatments. I can understand completely why MVD would not work for those with MS lesions being the ultimate cause of the TN.

I'm interested to hear if others have had success with those methods mentioned in your post as well.