Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


advertisement
Reply
 
Thread Tools Display Modes
Old 06-20-2015, 08:25 AM #1
melissat12 melissat12 is offline
Newly Joined
 
Join Date: Jun 2015
Posts: 2
8 yr Member
melissat12 melissat12 is offline
Newly Joined
 
Join Date: Jun 2015
Posts: 2
8 yr Member
Default Dr. Recommendations

I was recently diagnosed with neurogenic TOS after a couple of years of unsuccessful PT and a trip to St. Louis to see Dr. Robert Thompson. The Dr. visit was thorough; however he recommended surgery as my best option for long-term relief.

Before I make my treatment decision, I want to get a second opinion. I am considering seeing Dr. Ying Lum at Johns Hopkins and wanted to see if anyone has had experience with Dr. Lum treating TOS. I would appreciate your comments on his approach, bedside manner, consultation experience, etc.

Also, if there are other Drs. (preferably in the southeast or east coast) that I should consider, I would appreciate your response.

Thank you!
melissat12 is offline   Reply With QuoteReply With Quote

advertisement
Old 06-25-2015, 02:41 PM #2
cyclist cyclist is offline
Member
 
Join Date: Sep 2013
Posts: 176
10 yr Member
cyclist cyclist is offline
Member
 
Join Date: Sep 2013
Posts: 176
10 yr Member
Default

I'm also interested in learning more about Dr Lum.

If you haven't seen it already, the thread below has some info from Dr Lum patients.

http://neurotalk.psychcentral.com/thread200045.html

If you find out anything else, please let me know ...
cyclist is offline   Reply With QuoteReply With Quote
Old 06-25-2015, 03:53 PM #3
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Default

Were you off work while doing the PT?
Was it with an advanced PT or TOS specialist PT?

What is your avg pain level?
Do you hav etrigger points ?
How did you acquire TOS, do you have any ideas on it?
repetitive work/ sports/activities, or a specific injury or accident?
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
Old 06-26-2015, 09:28 PM #4
shug2003 shug2003 is offline
Junior Member
 
Join Date: Jun 2015
Posts: 20
8 yr Member
shug2003 shug2003 is offline
Junior Member
 
Join Date: Jun 2015
Posts: 20
8 yr Member
Default Dr Thompson

Think twice about having this surgery. I was diagnosed by a neurologist with Suprascapular neuropathy and dorsal scapular neuropathy through an EMG. I was then sent to a Vascular surgeon for Thoracic Outlet Maneuvers(Doppler Ultrasound). Radial pulse obliterated with certain movements and I was diagnosed with neurogenic TOS and pec minor syndrome. Went to Dr Thompson after failed physical therapy for many years and he decided that TOS surgery would be the best choice. I have not been the same since. I can tolerate pain very well so I was ok the first few weeks post op. I even showed another patient how great my ROM was right after the surgery. The irritation after that period has been bad. Post op MRI shows scar tissue surrounding the Brachial Plexus nerve roots, trunks, and cords. I used to have pain in neck, scapula, upper arm. Now, 2 years after the surgery, I have a constant burning/tingling/irritation in the chest/neck/arm/front of shoulder as well as the pain before surgery in the scapula/neck/upper arm. I also now have a Deep Vein Thrombosis in my axillary vein - the same vein that goes from the brachial plexus through the pec minor where Dr Thompson operated! I am not trying to scare you--just letting you know what I have been through with Dr Thompson. Not to mention you really don't know who is operating on you- he could be training a resident (they have to learn somehow). He may tell you 75% success rate...that is not true. Doctors inflate this #... Check out*edit* -I would say more like a 25% success rate. 10-1 star reviews out of 5 and 2-5 stars out of 5. Dr. Thompson does work on major league pitchers - A few have had success. Chris Carpenter-St. Louis Cardinals had TOS surgery and initially came back to play for a short period. He was quickly forced to retire after recurrent issues.



Quote:
Originally Posted by melissat12 View Post
I was recently diagnosed with neurogenic TOS after a couple of years of unsuccessful PT and a trip to St. Louis to see Dr. Robert Thompson. The Dr. visit was thorough; however he recommended surgery as my best option for long-term relief.

Before I make my treatment decision, I want to get a second opinion. I am considering seeing Dr. Ying Lum at Johns Hopkins and wanted to see if anyone has had experience with Dr. Lum treating TOS. I would appreciate your comments on his approach, bedside manner, consultation experience, etc.

Also, if there are other Drs. (preferably in the southeast or east coast) that I should consider, I would appreciate your response.

Thank you!

Last edited by Jomar; 06-26-2015 at 09:46 PM. Reason: sorry no linking for new members..
shug2003 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
elap (06-27-2015)
Old 06-26-2015, 09:54 PM #5
Jomar's Avatar
Jomar Jomar is offline
Co-Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Jomar Jomar is offline
Co-Administrator
Community Support Team
Jomar's Avatar
 
Join Date: Aug 2006
Posts: 27,678
15 yr Member
Default

Hello shug2003,
That is one of the main problems, scar tissue growth /overgrowth... It is so hard to tell who might end up with more than the usual amount of scar tissue..

Was it ever mentioned with the imaging, if you had any scar tissue before the surgery?
Which procedures did you have? Rib removed? pec minor? scalenes?
__________________
Search NT -
.
Jomar is offline   Reply With QuoteReply With Quote
Old 06-26-2015, 11:18 PM #6
shug2003 shug2003 is offline
Junior Member
 
Join Date: Jun 2015
Posts: 20
8 yr Member
shug2003 shug2003 is offline
Junior Member
 
Join Date: Jun 2015
Posts: 20
8 yr Member
Default

Quote:
Originally Posted by Jo*mar View Post
Hello shug2003,
That is one of the main problems, scar tissue growth /overgrowth... It is so hard to tell who might end up with more than the usual amount of scar tissue..

Was it ever mentioned with the imaging, if you had any scar tissue before the surgery?
Which procedures did you have? Rib removed? pec minor? scalenes?
No imaging to tell if I had scar tissue before the surgery. I had a supraclavicular thoracic outlet decompression including anterior and middle scalenectomy, brachial plexus neurolysis, resection of first rib, and pec minor tenotomy.

Post op imaging at spectrum(grand rapids, mi) showed nothing in brachial plexus. This was done with a 1.5 tesla MRI. I went to Mayo clinic a few months later and they used a MRI 3 tesla which showed scar tissue on the brachial plexus nerve roots, divisions and cords. T2 hyperintensity and signal changes in the brachial plexus to the upper arm and infraspinatus. I stress that if you are looking for scar tissue you need advanced imaging (MRN, 3 Tesla MRI)

My pec/coracoid tunnel is super tight still and I have been through 4 different physical therapists since the surgery without much relief. Pec area, above and below collarbone are tight and hypersensitive from the surgery. Meds have not helped thus far. Active release to the surgical area (supraclavicular/retroclavicular) is the only thing that gives me a a little relief but the tightness/irritation always comes back within 2 weeks. I wish I could do my own release of the scar tissue but I haven't been succuessful so far.

I still have Scapular pain and rhomboid upper thoracic paraspinal issues as well.
shug2003 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
elap (06-27-2015)
Reply

Thread Tools
Display Modes

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
Recommendations on kijo Reflex Sympathetic Dystrophy (RSD and CRPS) 0 03-23-2013 08:26 PM
Portable fan recommendations? greenfrog Traumatic Brain Injury and Post Concussion Syndrome 1 06-12-2012 09:09 AM
New. Need NL recommendations. aspen New Member Introductions 10 10-05-2008 12:17 PM
Any recommendations on... watsonsh Vitamins, Nutrients, Herbs and Supplements 9 01-19-2008 06:31 PM


All times are GMT -5. The time now is 10:41 AM.

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.