I'm happy to share my story and all I've been through, up to and including MCS. I'm so excited to finally be getting this surgery - allthough the PNS was helpful it didn't touch my deep pain. Niki and I have emailed, and she's def been helpful. My MCS surgery is september 7th, and I'll be in the ICU for the whole trial until sept 14, when hopefully they will implant the permanent system. If it didn't work well, they are going to implant a permanent PNS system. Please feel free to ask me any questions!

It seems to make a difference as to what area and of which nerves/ branches the damage, or where the pain signal jumps in . then try to intercept that signal and do a scramble on it before it gets back to the brain. So you will have a very high tech "cousin" device to my PNS (T-Rex) and boy is that name for my stim so fitting as I post to you .
I know that I and others would find anything you have to share helpful .
I got a question or 2 or 5 .
What state are you having this done?
Do you have someone to be there with you?
How long have you been offered this as an option, or how long have you been looking into motor cortex and finding info.. researching it?
Oh I wrote my friend Amy hopefully I can connect you both soon .

I want to know.. if you know when/ how you first got ATN .
what other things have you tried in the past??
okay I will stop with the questions but never stop with my prayers for you and your upcoming surgery .
Keep yourself healthy inside and out Legal and know I am sending good energy low pain and blessings to you and yours.
PEACE
BMW & T-Rex

Hey BMW,

Thanks for your thoughts. I'm having my MCS surgery in Ohio, though I was originally supposed to have it this past January at Mayo Clinic in Minnesota. Both my parents and boyfriend will be at my surgery and will stay in Ohio throughout my trial until (hopefully) my permanent implant surgery a week later.

I first found out that I might be eligible for MCS when I got treatment at Mayo last summer. Because I don't have TN and therefore am not eligible for any of the TN surgeries, one neurosurgeon referred me to another NS who thought I might be eligible. I had to get psychological testing (for both the PNS and MCS) and my case had to be approved by the head of pain/neurology and the entire surgery committee. I also had to exhaust all other options, which included enrolling in Mayo's Pain Rehabilitation Clinic, a 3+ week long comprehensive program designed to teach those who suffer from chronic pain how to best manage it.

In addition to attending the PRC, I've tried all of the different classes and kinds of meds: anti-convulsants, muscle relaxers, headache meds, NSAIDs, steroids, narcotic and non-narcotic painkillers, etc. I've also tried a bunch of alternative therapies including certain food and vitamin regimens, hypnosis, yoga, biofeedback, meditation, etc. Because I don't have classic TN, I'm not eligible for most of the surgeries discussed on this board, but I have had injections, two sphenopalatine ganglion surgeries, and the PNS.

All of this started three years ago when I was having such intense pain that I was going to the ER almost daily. None of the doctors could figure out what was wrong. I went to just about every specialist there is. I lost 15 pounds, and I was thin to begin with. Finally I went to an allergist who looked up my nose and saw massive polyps filling the entire nasal cavity. I immediately was sent to an ENT surgeon, and my CT showed that I had sinus tumors filling up my sinus cavity as well. They were so big and fast growing that they actually broke my nose. So I was booked for a bilateral endoscopic sinus surgery with septoplasty (to straighten my nose), which was a horrible surgery. I was lucky though, and to my ENT's surprise, the tumors were not malignant. He got them all out and that was supposed to be the end of it. No such luck. Within four months they had all grown back and I had to go through the surgery again. After that one they didn't come back, but I was still in tons of pain. My ENT was flabberghasted and finally sent me to a pain management anesthesiologist, who determined that the tumors were so large that they had pressed and damaged the trigeminal nerve. That combined with the trauma from the extensive surgeries left me with atypical neuropathic facial pain...some call it ATN. And here I am. That was three years ago when I was 22. Sorry for the novel!

wow I am so sorry you have had to deal with so much in your young life.But one thing I know is your age will be a very positive thing in respect to your Motor Cortex . I have some "feelers" out for some contacts and info to share with you. I sent you a message so dont forget to check em here
Tomorrow a good pal of mine is having a descending trigeminal tractotomy Dr . Jannetta assisting it hasn't been done since the 70"S .
Please check your messages . I gotta go be on down time with the ick for a bit
but thinking of you and sending blessings to you and yours.
PEACE
BMW

I hope you get the last email I sent ..Amy would love to chat with you LegalLady.
And I so hope that you find many of us here care and are sending our positive thoughts and prayers to you and yours. Sept isnt that far away.
and it may be true that there are very few here who have had this as an option it is also true that many of us ARE interested and would find anything you share here VERY HELPFUL !! I know this is true because I am finding that Motor cortex is becoming more available, as an option and it is also now approved by the gov,fda for treatment of the many different neuro pathic and neuralgias . so TRUE,... any info words thoughts etc... would and is very much needed from you and others like you.
the more each of us talks , shares about our own journeys the more each of us learns, finds more support, comfort, knowledge and HOPE.
Hope that some day may lead to a much more pain free life . I hope and pray your Motor cortex surgery is the light at the end of the tunnel and that it is successfully everlasting.
PEACE
BMW

Hi,
Just wanted to add that this is the "next-in-line" surgery for me, if the PNS does not work. My NS is an expert, even a pioneer, in MCS and DBS. I was happily surprised when he wanted to do the PNS, because usually he just goes straight to MCS. So to me, it is not definitely on the table if this doesn't work.
Best of luck, legallady, I will be having Surgery on the 1st, so we can talk 'incision site pain" for the transmission devices, if nothing else. Hopefully it won't be too much of a bother, though.
Lily

You have been in my thoughts quite a bit lately Legalady
I know the surgery date is getting closer and Just want you to know all of us here are thinking and praying. keep us posted on how things are going and how you are.
Sending strength positive energy and blessings
PEACE
BMW

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I have you in my positive thoughts and many prayers for you !
I know it will be a good bit of time now before your up to being back on the comp during that time I pray God and the angels guide you and your family threw this . sending comfort strength and the best.
PEACE
BMW

p.s. I watched the show, prime time "secrets of your mind" t.v. show last night
They had a woman on there that had deep brain stim surgery for her eating and weight. was very interesting as they showed parts of the surgery and her awake as they positioned the leads and programed the stim.
I believe deep brain and motor cortex are very close to the same . My blessings and heartfelt positive prayers are with you and your family for this to be successful.

Hi everyone...thanks for the thoughts. Lily I'm looking forward to hearing how yours went. Mine is this Wednesday in Michigan. Ill let everyone know how it goes!!!

legal lady,

thanks for your story to date. I want you to know I am sorry for your horrible problems, but I am very glad you are sharing.
it helps me and other people with facial pain to read about other peoples experiences and treatments.

I will wish you good luck and will be thinking of you thru surgery and sending you good energy.

please post when you are up to it and let us know how things went and then when you are recovered, if you can, please share your experience with us.

thanks

Easygoing