Did anyone in here get Motor Cortex Stimulation surgery? 8 years in they've confirmed that I have a bundle of capillaries pressing on my trigeminal nerve. However, it is inoperable because the compression is in the pons. Meds don't work. My neurosurgeon has suggested MCS and wants me to think long and hard about it. Any information I can get from people who have actually gotten it would be great.
Thanks!
Hi LB,
I know that this reply is a little late - I was just speaking to a friend of mine with TN/AD, who has tried every different stimulator - he said that the stim that worked best for him was the MCS, along with a Gasserian Stim that he had done in Germany, before then, and then removed due to infection. I was just talking to my NS, and he, conversely, recommended against the MCS, and to try the Gasserian Stim that he has been working on with facial pain patients. The friend, however, said that the one that he just got from my NS did not last that long, and while the first one that he got was percutaneous, the one that my NS does requires a craniotomy. So, that is one positive response from one person that it did work for him, for a while. It is my understanding, talking to him and others, that stims have a limited timeline as far as efficacy is concerned, as it eventually is no longer effective. Hence all of the other stims that this friend tried. He occasionally does fire up his MCS, but it no longer has any effect when he tries.
Hope this helps.
Lily
Hi Lily,
Thank you so much for the response. I am aware of the efficacy issues with stimulators, but I am pretty desperate and need relief of any kind at this point. Meds don't work and I am hoping with advances in technology they can reprogram the stimulator (or so my NS says). I am waiting on insurance approval as of now. I am definitely going for it. I feel it is the right choice for me. I really appreciate you taking the time to fill me in on what you know!!!
Sincerely,
LBHiker