Travel to US for nTOS surgery
 

Hi All!

Has anyone travelled from overseas to have their surgery in the US? I'm an Aussie who has recently been diagnosed with bilat nTOS after many years of symptoms. Occurred due to MVA/whiplash 26y ago!

Unfortunately I have wasting on the left and had very severe symptoms prior to scalene botox recently. Considering surgery in the US due to high volume centres.

Interested in supraclavicular approach with scalenectomy, rib resection and neurolysis.

Any idea which surgeons treat international patients and what likely cost would be? Browsing online at websites of Dr's Thompson, Illig and Donahue at the moment.

Hi Ozdoc

Welcome to NeuroTalk :).

I hope that other members will be able to offer you good suggestions.

All the best.

Hi Kiwi,

Did you have surgery in Oz or NZ?

Sorry, I was wearing my "Community Welcome Team" hat; I have no personal experience of TOS.

Welcome... sorry to hear you’ve been dealing with this 26 plus years. I have been dealing with severe symptoms for at least 3, and symptoms for years prior that I never realized were part of this. I am 4 weeks post op scalenectomy woth neurolysis. I had my procedure done at the The Hospital
At the University of Pennsylvania with a renowned Neurosurgeon that has preformed this surgery for over 25 years. When researching and speaking with many doctors - this doctor has the best outcomes of most in northeastern Pennsylvania. (Which is including New York and Maryland) .

Hi, do you mind to share the doc's name? Did you do scalene injection first to diagnose? Can you share how your doc ruled out only scalenectomy and not rib resurrection was needed?

Hey... so I had every test possible for 3 years- basically just ruling everything out. But!!! There is doctor in Philadelphia that founded a diagnostic way to see if you have TOS! I’m beyond floored no one knows about this. His name is Dr Lev Nazarian at Thomas Jefferson University Hospital in Philadelphia. He’s amazing! He wrote the book on a ultrasound of the brachial plexus. I’ve seen him a few times - and this doc is incredible. He sat and talked with me - showed my step by step what was wrong and causing pain, showed me exactly where the nerves and muscles get tangled up in the brachial plexus. He did some injections the first time we met - but he said to me, has anyone mentioned surgery? I said yes, but using that as a last resort I’m trying everything else... at this point I’ve done almost 3 years of PT, OT, Chiropractor, massage therapy, multiple infections , botox , have had quite a few EMGs, ex rays, CT Scans .. and here in front of my face I’ve got our answer. He told me he know surgery is dire some , and last resort - but he thinks I’ve tortured myself long enough..So now it’s on the table - but I’m just going to try a little bit more.
I keep trying had Botox, Kenalog, everything. Then they said - my ortho along with Nazarian - hey she’s willing to try anything let’s try a hydrodisection. Sure. I go back to Nazarian, this is like 7-8 months after our first meeting... he “floods” my scalenes and brachial plexus w saline... it opens it all up, for a minute...
So, here I am moving forward with surgery... long overdue as I’m barley limping through work. I’m seeing maybe 1-2 patients a day, barely and calling out more often not.
I get Dr Eric Zager at HUP (Hospital of the university of Pennsylvania) he meets me, wants another neuro to see more to clear me - that it’s not anything we’ve missed . So he gets his consult in and now he’s ready to preform surgery. He’s apparently the number 1 guy. He only does scalenectomy, he does not do rib removal... apparently a million studies and all the loads of info as to why. Anyway - he’s the only doc that does this..., the only one. And has been for over 30 years. It’s a 50 percent success rate.... I said ok so 50 percent failure.but... I was no longer functioning anymore. I couldn’t work, I couldn’t take care of my children without loads of help. I couldn’t tolerate being upright, pain was taking over my life, I couldn’t hold my phone , or a tablet.