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!

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 ...

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?

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.

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.