advertisement
Reply
 
Thread Tools Display Modes
Old 07-15-2010, 05:00 PM #1
legallady534 legallady534 is offline
Junior Member
 
Join Date: Jul 2010
Location: DC metro area
Posts: 10
10 yr Member
legallady534 legallady534 is offline
Junior Member
 
Join Date: Jul 2010
Location: DC metro area
Posts: 10
10 yr Member
Red face 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!
legallady534 is offline   Reply With QuoteReply With Quote
Old 07-15-2010, 05:37 PM #2
Burntmarshmallow's Avatar
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
Burntmarshmallow's Avatar
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Default

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
Burntmarshmallow is offline   Reply With QuoteReply With Quote
Old 07-15-2010, 09:37 PM #3
legallady534 legallady534 is offline
Junior Member
 
Join Date: Jul 2010
Location: DC metro area
Posts: 10
10 yr Member
legallady534 legallady534 is offline
Junior Member
 
Join Date: Jul 2010
Location: DC metro area
Posts: 10
10 yr Member
Default

Thanks for the info bmw!
legallady534 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Burntmarshmallow (07-19-2010)
Old 07-19-2010, 05:25 PM #4
Burntmarshmallow's Avatar
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
Burntmarshmallow's Avatar
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Default

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 . what day is your surgery in Sept ?
Please let me know if I can help in any way.
PEACE
BMW
Burntmarshmallow is offline   Reply With QuoteReply With Quote
Old 07-20-2010, 06:19 AM #5
legallady534 legallady534 is offline
Junior Member
 
Join Date: Jul 2010
Location: DC metro area
Posts: 10
10 yr Member
legallady534 legallady534 is offline
Junior Member
 
Join Date: Jul 2010
Location: DC metro area
Posts: 10
10 yr Member
Default

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!
legallady534 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Burntmarshmallow (07-20-2010)
Old 07-20-2010, 04:06 PM #6
Burntmarshmallow's Avatar
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
Burntmarshmallow's Avatar
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Default

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
Burntmarshmallow is offline   Reply With QuoteReply With Quote
Old 09-08-2010, 04:41 PM #7
Burntmarshmallow's Avatar
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
Burntmarshmallow's Avatar
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Default

Quote:
Originally Posted by legallady534 View Post
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 !
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.
Burntmarshmallow is offline   Reply With QuoteReply With Quote
Old 01-16-2011, 10:44 PM #8
Barbara woolley Barbara woolley is offline
New Member
 
Join Date: Jan 2011
Location: Alabama
Posts: 2
10 yr Member
Barbara woolley Barbara woolley is offline
New Member
 
Join Date: Jan 2011
Location: Alabama
Posts: 2
10 yr Member
Default 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 View Post
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!
Barbara woolley is offline   Reply With QuoteReply With Quote
Old 01-17-2011, 09:40 PM #9
Burntmarshmallow's Avatar
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
Burntmarshmallow's Avatar
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Default

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
PEACE
BMW
Burntmarshmallow is offline   Reply With QuoteReply With Quote
Old 11-28-2011, 06:03 PM #10
Burntmarshmallow's Avatar
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
Burntmarshmallow's Avatar
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Default A bump up for someone looking for info ---

bumping up for a newbie
Burntmarshmallow is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Atypical Trigeminal Nerve Pain mlittlem Trigeminal Neuralgia 15 07-22-2013 05:46 PM
Atypical Face pain and teeth bw02646 Trigeminal Neuralgia 11 08-31-2010 10:11 AM
trigeminal neuropathy/atypical face pain - scared!!! bw02646 Trigeminal Neuralgia 1 09-20-2009 09:44 AM
Motor-Point Stimulation for Conditioning the Diaphragm of Patients With Amyotrophic L BobbyB ALS News & Research 0 11-29-2007 09:52 PM
Tap Into Motor Cortex for Robotarm BobbyB ALS News & Research 0 06-20-2007 12:13 PM


All times are GMT -5. The time now is 06:19 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.