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legallady534 07-15-2010 05:00 PM

Motor Cortex Stimulation for Atypical Facial Pain
 
Has anyone on here had motor cortex stimulation surgery for atypical neuropathic facial pain after a PNS was unsuccessful? My PNS trial was unfortunately unsuccessful and my motor cortex surgery is in early September. Please reply if you have experience with this kind of situation. Thanks!

Burntmarshmallow 07-15-2010 05:37 PM

I can connect you with a few who have had motor cortex . I can also share that on face book there is a group of over 800 others who have or are getting motor cortex, deep brain stimulation .
http://www.facebook.com/group.php?gi...1.720520918..1
my friend Amy just had it and it was a life saver for her. she says it was much easier then when she had her MVD.

I dont think I am allowed to post links to other forums like I just have for deep brain group on facebook but I am sure the mods will moderate and I wont take any offense as I am just trying to help and so are they so its all good.
PEACE
BMW

legallady534 07-15-2010 09:37 PM

Thanks for the info bmw!

Burntmarshmallow 07-19-2010 05:25 PM

Legallady,
How are things going for you ? Motor cortex brain surgery is a pretty serious big deal. We will have you in our most positive thoughts and sending tons of prayers. Not many around here have been offered that as an option. but I know a few who have had this surgery. It takes a while for everything to get up to full power and start working really good.and too Time for You to heal and get strength and self back up and going I hope you and Fizz have been able to connect. She is a pretty neat lady tho not in this country. I think you will find more that are in USA at the link .
I really hope you stick around and up date us on how things go for you. You would help MANY others just by sharing. help others see they are not alone, not the only one going threw that. I / We are Sending you many blessings and I wish to keep in touch with you :hug: . what day is your surgery in Sept ?
Please let me know if I can help in any way.
PEACE
BMW

legallady534 07-20-2010 06:19 AM

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!

Burntmarshmallow 07-20-2010 04:06 PM

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 :rolleyes: .
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 :hug:.
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

legallady534 07-21-2010 06:57 AM

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!

Burntmarshmallow 07-21-2010 10:41 PM

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 . :smileypray::smileypray::smileypray::smileypray:
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.:hug:
PEACE
BMW

Burntmarshmallow 08-08-2010 11:30 AM

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. :hug:
PEACE
BMW

Mylastnerve 08-09-2010 10:48 AM

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

Burntmarshmallow 08-28-2010 11:29 PM

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 :hug:
PEACE
BMW

Mylastnerve 08-31-2010 09:58 AM

Dear LegalLady,
Before I go out for my own surgery, I want to wish you all the best with yours! I pray that it all goes well and that it is complication-free. You will be in my thoughts and prayers.
Take care, and big hugs! :hug:
Lily

Burntmarshmallow 09-08-2010 04:41 PM

Quote:

Originally Posted by legallady534 (Post 677113)
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!


----------------- -------------------- ------------------------
I have you in my positive thoughts and many prayers for you ! :hug:
I know it will be a good bit of time now before your up to being back on the comp:hug: 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.

legallady534 09-12-2010 07:30 PM

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!!!

easygoing 09-13-2010 04:51 AM

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

legallady534 09-15-2010 12:14 AM

Well, it's the night before surgery and I'm laying here awake nervous as can be. I've been praying pretty much non-stop, and I know a lot of people are doing the same. I have the utmost faith in my neurosurgeon...just nervous about the actual surgerry itself. I will def give updates as I can and will post a thorough rundown of the experience as soon as I'm able. Wish me luck!

Mylastnerve 09-15-2010 10:15 AM

Dear Legallady,
You are on my mind and in my prayers today as you have your surgery. I know that even though Tina is taking a break, that you are in her prayers today as well - we talked about you yesterday. You are so strong and amazing - brain surgery is never an easy decision, as many of us know. Think of us all at your side, surrounding you with love and protection, as you venture forth.
Big hugs, and best of luck for a successful outcome.
Lily

legallady534 09-20-2010 10:20 PM

Well, the trial of my MCS was successful and I'm going in tomorrow for my permanent stimulator! I'm not going to lie, this process has been very painful but I'm confident the long term results are worth it. I'll post a more detailed description of my surgery when I'm more recovered from my final surgery tomorrow. Please keep me in your thoughts!

Burntmarshmallow 09-21-2010 06:30 AM

Tif, :hug:
I have you and your team of doctors and family in my prayers,positive thoughts and successful wishes.
:smileypray:
give your self time to heal take care of you ! I am sure you heard nikki has some sinus cold flu infection going on and stim isnt working so well at the moment but as soon as its cleared up things will be good again..PLEASE take care and try very hard to stay healthy ... no infections or colds. that is the biggest worry with your type.. motor cortex and with my pns . I ask God to protect you , carry you threw this final surgery, provide fast healing and a very very happy ending . Thank You God.
we are all right with you with prayers and in spirit Legallady:hug:
PEACE
BMW...Tina

P.S. I just came to retrieve some private messages and had to post to you :)
will be phone calling a couple of pals later tho... back to my time out/break.

Mylastnerve 09-21-2010 10:03 AM

Dear Legallady,
Yeah, My NS told me that at first with the Motor Cortex that it's hard to differentiate between the face pain and the wound pain. I hope that you have been adequately medicated so that it helps you past that hurdle. It's great to hear that you have all of that support surounding you - it is essential to have someone there to get you hot blankets and/or go on chocolate-pudding hunting expeditions.
You are in my prayers and thoughts. I hope that the haircut is not too extreme, although I have my doubts that it's a keeper.
Hugs :hug: ,
Lily

legallady534 09-21-2010 10:31 PM

Surgery went well today but I've spiked a fever and we're afraid I'm rejecting the implant. Please pray for me!

Mylastnerve 09-22-2010 10:08 AM

Quote:

Originally Posted by legallady534 (Post 697456)
Surgery went well today but I've spiked a fever and we're afraid I'm rejecting the implant. Please pray for me!

Dear Legallady,
Praying fast and hard for the fever to dissappear and thiat things return to normal quickly! :hug:
We're here for you!
Hugs,
Lily

Burntmarshmallow 09-22-2010 03:45 PM

Adding my prayers and positive healing energy to you and all those involved.
I hope by now the fever has gone and your resting comfortably .
Thanks Lily :cool: for helping me with the difference between the two
motor cortex and deep brain . there is a very many differences .
Please let us know how you are doing when you can Leagalaldy but
MOST IMPORTANT IS TAKE CARE OF YOU. !!
And know that we are here sending you many prayers:smileypray::smileypray: and healing thoughts .
PEACE
BMW

Rae of Hope 09-22-2010 04:08 PM

Quote:

Originally Posted by legallady534 (Post 697456)
Surgery went well today but I've spiked a fever and we're afraid I'm rejecting the implant. Please pray for me!

I'm praying for you as well!! Just wanted to let you know!

Hugs,
Kimberly

Mylastnerve 09-27-2010 12:00 PM

Get well soon!
 
Dear legal lady, I am really hoping that you are doing ok right now - I hope that the fever has subsided, and allowed you to continue with the trial. I pray every day that your journey through this is a safe one. Keeping you in my thoughts, and sending a hug from all of us :grouphug:
Lily

Burntmarshmallow 10-04-2010 01:27 PM

Legallady we have been kinda worried and wondering how things went as far as the stim surgery and your fever.
Did things turn out well and fever go down so you able to keep the motor cortex. or did they remove the m.c.stim and put in a PNS???
Please please let us know how you have been. I know we are new friends but all of us care very much and we have been keeping you in our prayers and positive thoughts . sending more with this post too.
praying to hear some good news or any news actually from you when you feel up to it.
:grouphug:
PEACE
BMW

Burntmarshmallow 10-27-2010 03:35 PM

We still are thinking of you Legalaldy
Sending positive thoughts and prayers for you and your family.
healing hugs :hug::hug:.
PEACE
BMW

Barbara woolley 01-16-2011 10:44 PM

Atypical facial pain
 
hello! I am new to this forum, so please be patient with me. I have lived with atypical facial pain for two years and have had all the diagnostics done. What is PNS? Where are you undergoing the motor cortex surgery
Quote:

Originally Posted by legallady534 (Post 675848)
Has anyone on here had motor cortex stimulation surgery for atypical neuropathic facial pain after a PNS was unsuccessful? My PNS trial was unfortunately unsuccessful and my motor cortex surgery is in early September. Please reply if you have experience with this kind of situation. Thanks!


Burntmarshmallow 01-17-2011 09:40 PM

info about the PNS is up top all the threads here in the stickies.. here is a link
http://neurotalk.psychcentral.com/thread124048.html

Motor Cortex is VERY different then PNS .. sadly I , we have not heard back from leagalady I do know she had her surgery in Michigan tho.
guess when you are one of the very very few having treatment most others arent or havent had you feel like you dont fit in :( :(. and ya dont share as easy. ya kind search out others who have been threw the same. I know she did indeed find others who have had this surgery and for that I am glad. I just wish she would remember her posting here and let us know how things went. I hope she is doing great. with either the motor cortex or the pns .
if you would like info or to be in contact with those who have had motor cortex let me know I can connect you with others and point you in the right direction for finding info.;)
Lastly glad you found your way here welcome ... to the t.n family here at neurotalk :grouphug:
PEACE
BMW

Burntmarshmallow 11-28-2011 06:03 PM

A bump up for someone looking for info ---
 
bumping up for a newbie

Jessiet 02-04-2015 05:13 PM

Quote:

Originally Posted by legallady534 (Post 675848)
Has anyone on here had motor cortex stimulation surgery for atypical neuropathic facial pain after a PNS was unsuccessful? My PNS trial was unfortunately unsuccessful and my motor cortex surgery is in early September. Please reply if you have experience with this kind of situation. Thanks!

hi there
I know this goes back a long time but I have exactly what you have. I have neuropathic facial pain after I had sinus surgery I had. I have seen so many drs and nothing has worked so far. Was your surgery successful? I look forward to hearing from you. Thanks so much

EnglishDave 02-04-2015 06:49 PM

Hi Jessiet,
I'm afraid if you look at the Profiles of the posters in this Thread their last activity on the Forum was before 2012, except Burntmarshmallow who was around last October. Perhaps one of the current members, or Administrators have some helpful links.
I know what you are going through, I have trigeminal parasthesia (left side) permanently and Chronic TN due to a knot of arteries round my Trigeminal nerve. I hope you find relief as well as the information you are searching for.
If there is anything else I can help you with, feel free to ask.

Dave.

Burntmarshmallow 02-14-2015 01:41 AM

I am still around .


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