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Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie. |
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04-23-2012, 12:00 PM | #1 | ||
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Junior Member
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Hello fellow TOS sufferers:
I am new to the board. Was diagnosed in November of 2011, but really started showing symtoms in May of 2011 -- ended up waking up out of the blue one morning with a swollen right hand all the way up to my elbow. Within a couple days I was diagnosed at the hospital with a blood clot and the rest of the follow ups led me to my diagnosis several months later of venous thoracic outlet syndrome. Apparantly, there is only ONE specialist in Toronto who performs this surgery and he is currently transferring these skills to another surgeon (and will no longer be doing this type of surgery). As a result, I have been waiting and waiting and waiting....been told I need surgery, but STILL have yet to meet with the new surgeon who will be doing it. How frustrating! Anyone else from Toronto on this message board, or anyone else have similar experience? Thanks everyone! |
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04-24-2012, 09:07 PM | #2 | |||
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Try doing a forum search for "Toronto". Are you able to travel to another province to have surgery with someone with more experience? I wouldn't want a newbie to cut on me.
__________________
Marc . ACDF C5-C6-C7 2/28/11 . . . . |
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04-26-2012, 12:47 PM | #3 | ||
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Quote:
*Canadian Centre for Integrative Medicine and the Physiatry Interventional Pain Clinic, Sunnybrook Health Sciences Centre, University of Toronto; wYork University; and zCanadian Centre for Integrative Medicine, Toronto, Ontario, Canada. Gordon D. Ko, MD, CCFP (EM), FRCPC, FABPMR, FABPM,* Nathaniel Benjamin Nowacki, BSc,w Leigh Arseneau, ND,z Melanie Eitel, RMA,z and Annie Hum, MDz. (e-mail: drgordko@ rogers.com). May be a good place to start. Good Luck! |
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08-08-2013, 01:17 PM | #4 | ||
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New Member
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I was diagnosed with neurogenic TOS in Vancouver before moving back to Ontario. I had a positive nerve conduction test indicating C8-T1 wasting and recommendation for first rib resection.
HOWEVER - things took a big turn in Ontario. I've been to many specialists ... and not one specialist seems to know what this condition is, OR how to diagnose it, OR treat it!! All symptoms point to neurogenic TOS, but here is the kicker - I also had a previous break to the distal clavicle. So it seems I only get consideration for orthopedic surgery. I had a bony abnormality removed from the distal end of the clavicle which is healing fine - but ALL the TOS symptoms are still there. The only relief I ever experienced is when I had a scalene block for the shoulder surgery. Again - this indicates TOS! Can anyone recommend a specialist in Southern Ontario that I can go to that really understands this condition? Please, please help! Geeez Ontario, you think there would be a better standard for diagnosis & treatment in this province! |
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08-14-2013, 07:01 AM | #5 | ||
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Newly Joined
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Hi bmod!
I'm in Ontario too and have yet to find a specialist for TOS. I have been to multiple other specialists if course. Currently I am looking into the University of Western Ontario Hand and Upper Limb Clinic in London,ON. Their website states they deal with TOS. Have you heard anything about them? Quote:
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02-06-2014, 08:13 PM | #6 | ||
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Junior Member
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Hi, bmod,
if your willing to travel to Toronto and able to get a referral, my surgeon was Dr. De Perrot (Thoracic Surgeon) at Toronto General Hospital. your completely right. NOONE knows what TOS is (well my surgeon did). There is also a non-surgical specialist at Toronto General, in the Vascular Clinic, I can't seem to find it in the hospital directory (your doctor might need to contact the clinic to inquire), he only works there part time (one day a week i think) that specializes in TOS, that was as of May 2013 - I hope he is still there. Dr. de Perrot might even be able to refer you to another specialist if you prefer. He made me feel super comfortable, was very blunt, thorough and honest. He might also to refer you to the specialist in the vascular clinic. Please let me know if you'd like his details Katie Quote:
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02-06-2014, 11:31 PM | #7 | ||
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Junior Member
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I've heard something about Dr. Greg Borschel in Toronto, ON but not more than that. I know he did is studying at Johns Hopkins University which I think this is one of the best place in the States for knowledge of TOS. Correct me if I'm wrong.
Unfortunately there is not much Cardiothoracic Surgeon in Canada, even in the States i think. Mine was Dr. Sean Mcfadden at Foothills Medical Centre in Calgary, AB and on my opinion he is pretty awesome. He has a great attitude and is very human. The first thing he asked me was to call him Sean and not Dr which put confidant at first contact. He spend a good 45 minutes with me. 15 for the diagnosis and 30 to explain me what is TOS in detail. He truly believe to rehabilitation without surgery and he wanted me to try every possible treatment before going to surgery. I am from Quebec but i am a Yukon resident and several differant Dr told me that he is the referance for TOS in Canada and i believe he is. I am kind of lucky because the Yukon Territories fly me over there and they are paying for my expenses so it was easy to get one of the best one in Canada. Alexis |
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02-06-2014, 11:58 PM | #8 | ||
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Junior Member
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Hi Alexis,
I can't seem to find a Dr. Greg Borschel other than a plastic surgeon at Sick Kids in Toronto, which I don't think that is it, well in google search that is. My surgeon was the same way. Made sure I tried ALL options before surgery, even requested Physio, chiro, acupuncture reports to verify. at Toronto General Hospital the Vascular Clinical actually mentions they specialized in TOS. I also know my Thoracic surgeon specialize in TOS aswell. http://www.uhn.ca/PMCC/PatientsFamil...s/Vascular_Lab i'm SOO glad your able to be travel for consultations, which makes it great to get options especially with TOS since it's quite rare, and not many "specialists" in Canada, compared to Dr. Donahue in the states. It would be great if my private insurance would have covered a consult with him. I'm glad you found a specialist!! did you end up having surgery?? Katie Quote:
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02-05-2014, 11:40 PM | #9 | ||
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Junior Member
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Hi,
I know it's quite delayed response. I was dx was TOS in April 2013, in Toronto swell. There are a few specialists (one who deals with clinical treatment alone (in the Vascular Clinic - he only works part time - i think he's there once a week. Who were you referred to??? I had surgery May 2013 at Toronto General Hospital by Dr. De Perrot (Thoracic Surgery Clinic) - I might have some connections still and can give you the info, and if you give it to your dr he can refer it to him, I was able to get an appointment with him within a few weeks. Let me know if you have been able to have any success!!!! let me know if I can help!!!! Quote:
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05-21-2016, 09:35 PM | #10 | ||
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Junior Member
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Your story is soooo sad...I hope my info can help you! I am from Kitchener, Ontario and looked for a looooooong time for a surgeon that specializes in TOS decompression. There is a new Vascular Surgeon that has come up from the Mayo Clinic in Minnesota and practising in London Ontario at Victoria Hospital. Her name is Dr. Audra Duncan and she was performing 2-3 decompressions per month in the States. Also, because she is new to Canada her waitlist is short! Best of luck to you!
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