Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 06-22-2011, 09:59 AM #1
draggin' draggin' is offline
Junior Member
 
Join Date: Jan 2010
Posts: 54
10 yr Member
draggin' draggin' is offline
Junior Member
 
Join Date: Jan 2010
Posts: 54
10 yr Member
Default ok so 48 views no reply

All I want to know is: Does anyone know if thymectomy can be successful after years of having MG? Or does it need to be done within the first few years? (Thymus appears normal)...Any response would be appreciated
draggin' is offline   Reply With QuoteReply With Quote

advertisement
Old 06-22-2011, 12:47 PM #2
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,690
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,690
15 yr Member
Default

Sorry you haven't gotten any replies yet, but the view counts can be deceiving.
Many views on posts are by visitors and even search bots - they pick up on key words for search engines like Google, Yahoo, Bing, and others.
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
DesertFlower (06-24-2011), draggin' (06-22-2011)
Old 06-22-2011, 11:03 PM #3
Juanitad's Avatar
Juanitad Juanitad is offline
Member
 
Join Date: May 2009
Location: Eastern TN
Posts: 314
15 yr Member
Juanitad Juanitad is offline
Member
Juanitad's Avatar
 
Join Date: May 2009
Location: Eastern TN
Posts: 314
15 yr Member
Default

I don't know that I would call mine successfull as in remission of mg, but I do know I would be dead right now if I had not had the thymectomy - but that's just me.

Diagnosed in 2000 and was told that at 50, I was to old for a thymectomy to do much good. MG progressed until 2005 when I had a crisis and had IVIG for the first time. Long story short, I had to have other surgery in my thorasic area and I insisted that if they had to open my chest, they could take out the thymus too - neuro agreed but we had to convince the surgeon that even though the CT scan didn't show any problems with the thymus, it wouldn't hurt to remove it.

Turns out I had a Stage II tumor in the thymus and because they got clean margins, I didn't have any chemo, just 28 radiation treatments. The MG was better for a couple of years, still did mestinon and cellcept, but was able to cut way nack on the IVIG. However, I have had a lot of problems the last few years amd retired on disability last fall.

Don't know if this helps, just wanted to give my experience. Hope you find the answer for you.
Juanitad is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
draggin' (06-23-2011)
Old 06-23-2011, 12:42 PM #4
Brennan068 Brennan068 is offline
Member
 
Join Date: Oct 2008
Posts: 313
15 yr Member
Brennan068 Brennan068 is offline
Member
 
Join Date: Oct 2008
Posts: 313
15 yr Member
Default

Quote:
Originally Posted by draggin' View Post
All I want to know is: Does anyone know if thymectomy can be successful after years of having MG? Or does it need to be done within the first few years? (Thymus appears normal)...Any response would be appreciated
If your thymus is hyperplastic, then yeah, it may help. If the thymus is not hyperplastic you'll not likely see any change (from what I've been told from the neuro that I asked more details re. tymectomies from.) I had my thymectomy to remove a tumor... the details I was digging for was to find out if it would help with my MG after the fact.
Brennan068 is offline   Reply With QuoteReply With Quote
Old 06-23-2011, 01:49 PM #5
draggin' draggin' is offline
Junior Member
 
Join Date: Jan 2010
Posts: 54
10 yr Member
draggin' draggin' is offline
Junior Member
 
Join Date: Jan 2010
Posts: 54
10 yr Member
Default

Quote:
Originally Posted by Brennan068 View Post
If your thymus is hyperplastic, then yeah, it may help. If the thymus is not hyperplastic you'll not likely see any change (from what I've been told from the neuro that I asked more details re. tymectomies from.) I had my thymectomy to remove a tumor... the details I was digging for was to find out if it would help with my MG after the fact.
This is the first Ive heard of hyperplastic thymus...google time. Thnx
draggin' is offline   Reply With QuoteReply With Quote
Old 06-26-2011, 12:45 PM #6
newmugg's Avatar
newmugg newmugg is offline
New Member
 
Join Date: Apr 2010
Location: Texas
Posts: 5
10 yr Member
newmugg newmugg is offline
New Member
newmugg's Avatar
 
Join Date: Apr 2010
Location: Texas
Posts: 5
10 yr Member
Default

I just read an article stating that there has been some success with thymectomy with long time mg. Sorry I can't find the article I read or I would link it to you. How long have you had MG? Does your neuro do periodic CT scans of your thymus to make sure there have been no changes over the years?
I had a thymectomy due to thymoma 16 months ago and there has been no change in my symptoms but am still hoping for remission!
Best wishes,
~sherry from texas
newmugg is offline   Reply With QuoteReply With Quote
Old 06-26-2011, 01:27 PM #7
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
suev suev is offline
Member
 
Join Date: Jun 2009
Location: Texas
Posts: 748
10 yr Member
Default

Had neuro apt. recently - - she said that there is some recent research that has put the benefits of thymectomy (in the absence of tumor) into question. I'll try to get the name of the study from her at apt next month.
suev is offline   Reply With QuoteReply With Quote
Old 07-07-2011, 05:25 PM #8
Christel Jackson Christel Jackson is offline
Junior Member
 
Join Date: Jun 2011
Location: burlington ia
Posts: 15
10 yr Member
Christel Jackson Christel Jackson is offline
Junior Member
 
Join Date: Jun 2011
Location: burlington ia
Posts: 15
10 yr Member
Default

Quote:
Originally Posted by draggin' View Post
All I want to know is: Does anyone know if thymectomy can be successful after years of having MG? Or does it need to be done within the first few years? (Thymus appears normal)...Any response would be appreciated
Please be careful! I have been to many doctors who want to remove my thymus even though mine has always shown normal. The thymus is a important organ that we DO need. The thymus may not be working properly but that is not a reason to remove it.
Christel Jackson 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



All times are GMT -5. The time now is 03:36 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.