TOS Specialist NY/SF
 

Anyone know of any TOS Surgeons in the New York area? Or in SF bay area?

have you found our Drs & PTs sticky thread?
http://neurotalk.psychcentral.com/thread135.html

Off the top of my head & fairly close to parts of NY-
Dr. Donohue at MGH Boston, Mass
- Dr. Donohue is a cardiothoracic surgeon

But the sticky thread will give you many other names and /or numbers to call for updated referrals/information.

Look for Dr. Gary Fantini
http://www.newyorkphysicians.com/gary-a-fantini.html

He wrote an article on First Rib Rescection vs. Scalenectomy.You can find the Abstract on NCBI.Com.

I dont know who is in SF now, bur Dr Ellis(Berkeley) would know:
http://www.doctorellis.com/index.html

There is a Dr. Lee at Stanford that another forum member used.

Good Luck!

Yes I took a look at that thread but out of the surgeons in SF, only 2 are thoracic and one of them has a really bad review from a surgery he did in 2006 (Dr. James Avery). Also, I am in NYC and Dr. Fantini is also a vascular surgeon. I guess I need to figure out if vascular surgeons are ones I can also see with neurogenic TOS. Thanks!

Dr. Fantini is a vascular surgeon and I am looking for a thoracic or neurosurgeon but since he is fairly close I will probably try to see him anyway, at this point I am unsure if vascular surgeons would be good with neurogenic rather vascular TOS.

I will look into the drs in bay area, thanks!

I had surgery with Dr. Avery in SF in 2005. I'm worse for it.

He was very thorough in his discussions, good bedside manner, good follow up. However, when I started getting markedly worse about 8 months after surgery I wasn't thrilled with his response.

He said he was now having better outcomes. I asked why and he said, "I'm picking my surgical candidates more carefully." i said, "Does that mean I shouldn't have had surgery in the first place?" No answer...

He claims success rates of 85%, which a lot of the doctors do. I haven't seen any longitudinal studies bear out those numbers. Vascular TOS patients typically do better than Neurogenic, however.

There is also a doctor at UCSF who does surgery. I think they only remove the scalenes.

Good luck,
Kelly

Sorry to hear your surgery was unsuccessful. I appreciate the info about Dr. Avery. What kind of complications did you have as a result? Did you ever try to go back for a second surgery with another Dr?

I didn't really have complication except for phrenic nerve palsy (?) which causes the diaphragm to not work properly but that was supposed to resolve over time. My symptoms simply got worse, as did my daily headaches. After surgery I also developed migraines. I had an MRI of my brachial plexus with Scott Werden in SF eight months after surgery. It showed newly developing scar tissue on my brachial plexus. I haven't opted for more surgery. It seems to be a matter of diminishing returns if one tends to scar.

The problem I have with surgery is that surgeons often tend to hold the patient responsible if the surgery is not successful. You simply get handed off to the pain management doctors. I've never understood why doctors seem uninterested in solving the puzzle and answering why the surgery wasn't successful.

I wish you good luck whatever route you take.

Kelly