I have been dealing with TOS for the last 3 months and have become crippled by it. I can no longer hold my baby boy and I can't work either. I am now researching surgical options as conservative measures including PT, rest, meds and cortisone injections into my elbows have not helped. I am currently considering the following surgeons:

Robert Thompson at Washington University in St. Louis
Dean Donahue at MGH in Boston


Anyone who has been operated on for TOS and has experience with these surgeons or other surgeons...can you please contact me and let me know how your surgery went? Did you have complications? Did you recover from your TOS?

Any advice is deeply appreciated!

Welcome,
While waiting for replies you can also use the search tool, both Drs have been mentioned many times on the forum.

What type of TOS do you have? NTOS, ATOS /VTOS, disputed /multi factors
Do you know what factors caused your TOS?
How did you get such a quick diagnosis of TOS?

I have not seen either but from what I heard on the Facebook TOS group dr Thompson has a bit of a reputation. He is more aggressive with treatment but not very empathic and not very good with post op care. Dr Donahue has excellent bedside manners and it also a great surgeon. Have yet to hear one bad thing about him.

Hi, I have not had surgery, but have done alot of research and have read about most peoples experiences on this forum.I have seen 3 here in L.A. for consultations.

First of all,where are you located? Both Docs you have mentioned have very good reputations, Dr. Donohue more so. Dr. Pearl in Texas also has a good rep. I liked Dr. Gelabart in L.A. There are others and may be some closer to you.

Also how long have you conservative measures. Surgery should be a last resort. I have been doing PT,acupuncture etc for 3 years,it took me a long time to find a good pt/ I amfeeling somewhat better than I was but def not 100%. I have not worked in 3 years, but am trying to go back this summer.I I am not considering surgery at this point for me it seems like there are too many complications. Unless everything else has been exhausted. Have you looked at this list for pt's in your area? http://www.instituteofphysicalart.com/ipa/referral/list

You have only had TOS for three months??? Why do you have TOS? Have you done PT?

See my thread on botox with dr donahue.

Dr. T seems to have the most patients with post surgical complications, take unnecessary risks, and is occasionally reckless with his surgical approach. He by far has the worst post op care. I would incredibly weary of going to him.

I bet that Dr Thompson and the majority of his patients disagree with your outlandish statement.

RW

Thought on this question, these are just my opinions, please form your own:

If I were a young healthy person who has had TOS for less than three years, only had it on one side, and had it related to some sort of activity I engage in, baseball, violin, etc... I would go to Dr. Pearl.

If I had TOS from a CAR ACCIDENT for less than five years, and had bilateral TOS for less than 5 years, still had an open court case sueing the pants off someone and/or was awarded lifetime medical treatment I would go to Dr. Sanders/Dr. Machenic/Dr. Annest. Dr. Machenic is the best neurologist to do a nerve conduction test on me thus far. I have had at least 7 done...anyway, he nailed it exactly, naming exactly which tiny muscles in my hands have started to waste away. He actually gave explanation for the reason I was losing my fine motor skills AND determined if I did have surgery, that as far as my nerves go, it should go well, because they were not actually damaged, only compressed.

If I had TOS that didn't meet condition one and lived near St. Louis, I would go to Dr. Thompson. He is passionate about his work, and very experienced.

If I had TOS for more than 10 years, or have had previous unsuccessful surgeries, If I was a "difficult case", or if I had been turned away by any of the surgeons above I would go to Dr. Donahue.

Also, I would first have Botox of the scalenes And pec minor along with physical therapy as a treatment method in retrospect. I wish I had done this 10 years ago, but things were different then. Info on the pec minor really started in 2005. I would insist on having a pec minor release with the first rib resection/scalenectomy. Dr. Sanders work in this area is phenomenal. The pec minor release should always be part of the big surgery IMHO. More stress should be put on pec minor syndrome for tos patients.

With regard to entry through the armpit vs. above the colar bone, I would go with whatever the surgeon prefers. Whatever they prefer is what they are most comfortable with. Would you rather drive a car with the seat positioned the way you like it, or the way your passenger likes it?


There seems to be a lot of people on the west coast that are a little lost with regard to surgeons, especially California. Can some people give some insight to their opinions of doctors out there???

Hello,

I just had my surgery for a 1st Rib Resection on June 24th. I went with Dr. Gelabert at UCLA. He was amazing!! Honestly I am having the best recovery and his bedside manner is great. I trust him with anything. He was recommended to me by a friend who is a nurse and has worked with him. She only spoke of great things and from the first meeting I knew i had a good surgeon. You need to do a lot of your research. I also looked on these forums and couldnt find anyone had anything bad to say about him. All were great recovery times like 7 day and "I Feel Great"s. He did a great job of stitching and i am having no complications. He didnt nick any nerves and i am confident to say that in 2 weeks i will have a clean bill of health. I recommend Him!. He is at UCLA. UCLA wasnt a great hospital with great nurses but Gelabert is a gem!

Thanks for this. I liked hm alot when I went to him for a consultation, better than the other docs in L.A. If I were to choose surgery and didnt want to travel I would go with him. Do you live in the L.A. area? I would like to hear about your recovery and if/when you can go back to your regular work so please keep us posted. He had told me he has a 90% success rate. JKL