Has anyone had the surgery for a motor cortex neurostimulator; if so, did it work? Thank you.
I am wondering the same thing. Dr. Casey emailed me back yesterday and said that is what he is recommending for me. I am very skeptical about having this procedure. I am scared to death that I go ahead and have this done and it doesn’t work. Did your doc recommend this for you? What procedures have you had done? Thanks, Donna
I went to Dr. Casey too but he didn't recommend it for me. The Mayo Clinic did. I've just been on medication management.
Let me know if you decide to do it because I'm curious if it works. I also read somewheres that it isn't approved by the FDA but I don't know how long ago that was. They suggested it and if it didn't work the they would do the deep brain stimulator. What are you symptoms? Thank you.
I read the same thing just yesterday about not being FDA approved for the brain. What did Dr. Casey recommend for you? I have TN1 and 2 and I have developed anesthesia dolorosa the past 8 months after a second Cyberknife treatment.
I would not recommend that stimulator. I have been watching the process with several people that have had it. The results are not good. In so many cases it works for just a few months to maybe a year and then it fails all the way to not working at all, to seizures, to infections ( which is the worst ) to the leads migrating to wear they should not be, etc, etc. The surgery is very painful and a very long entailed process. Dr. Casey recommends it for everyone he sees.
I was going to have it done when I found out about the facial stimulator. It is called many things ....PNS, Nerve Stimulator.etc. They have been doing this for many years for the back. It is now approved for the face. It is day surgery. Go to St Jude Medical Supply web site and you can see what they do for the back. I do not think they have any info for the face on the site yet. Metronics is another supplier of the unit also. I just have the St, Jude one. There is 3 leads ( wires) that go under your skin for v1,2 and 3 and then go down ( under the skin ) down your neck to your chest where the unit is ( like a pace maker) which is the generator to make the unit work. What is does is blocks the signal of pain that goes to the brain. My pain was to the point of killing myself to 50% better the minute the surgery was over. I love it. I have had it now for 3 years. Gamma Knife gave me anestesia dolorosa and that is why I have the stimulator. Please look at it. AD is hell and will never go away. At least the stim helps. Casey does not do them from what I understand. If you have any questions please email me ■■■■■■■■■■■■■■■. Take care and know that you are in my prayers
I too have the PNS, and my surgeon recommended this after my MVD failed to address TN2 pain. Although he also does the Motor Cortex stimulator, that is really the last resort, and he would do the PNS first. It is a minor procedure, all done just under the skin, so I would suggest you look into PNS as an option before another invasive brain surgery.
Please ask me any question you might have.
Was it for all 3 branches? The doctor I saw said it's only for V1 & V2.
I just answered another person the same question. Let me see if I can find it as it was very long.
Look for the post that is from Wanda and starts with Hi Cheryl. The time says 3:21; but that is more than likely my time. Hope you find it. If not let me know. If is just a couple in front of yours
Yes, mine is for all three branches. I only have two leads, but they do cover all areas.
Man I've begged for a referral to a place that does the PNS here in Seattle, and I simply cannot get a referral outside UW to the 2 places that do them. Should I start over at a new place going to a low end doctor and getting a referral up the chain? I don't even know how to approach it.
Does the implant go on one of the branches or at the ganglion?
I've been on 100+ mg of nortriptyline for a year, along with 120mg cymbalta, 30mg oxycontin, and 10mg percocet. It has toned it down a bit but it never lets up. I'm 29, work full time, had an MVD, I really want to try the PNS.
I asked my neurologist about the referral to the place that does the PNS and he said the PNS was anecdotal results at best, and referred to UW pain management who doesn't do PNS units, AGAIN (3rd referral from 2 doctors to the same place when I asked for a referral to virginia mason). ugh.
I am not sure about the ganglion nerve, but my leads run from the battery in my chest, up my neck, and one is in front of my ear up to my scalp, while the other goes behind my ear up to my scalp. At first the PNS wasn’t really reaching to the top of my head, where my worst pain is, but I had a reprogramming session with the rep from St. Jude’s about 3 weeks ago, and now that area is taken care of.
I am really sorry to hear you are getting such a run around from your doctors. Would you ever consider traveling to get the PNS? I travel from GA to NY to see my surgeon. I know it is not always possible, but you might consider looking into it.
Please let me know how you are doing.
I called the office at the place that does the PNS and asked if they could request a referral from my doctor and they said no they have to get a referral from the doctor and after reviewing it they decide if you're a candidate.
So if you can't get to them directly I dunno how to...
My current neurologist is prescribing everything, I never went back to my surgeon after the MVD (well after getting staples out). All he was going to do is push the gamma knife, which my neuro has brought up numerous times. My neuro did say there was the "top" face pain specialist down in portland OR, so I should probably make that trip at least.
I'm not really happy with anyone in the medical community at the moment. The neurologist is the only one who's done anything. There was a 6 week gap after my mvd when the pain came back before I could get back into the neuro and I went to the doctor and ENT and none of them would do anything for the pain except say go back to the neuro, who I was already waiting 6 weeks to see. I sent you a friend request so I can pm you.