Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 04-23-2012, 12:00 PM #1
sealeg sealeg is offline
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Default Waiting forever in Toronto, Canada

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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Old 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.
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Old 04-26-2012, 12:47 PM #3
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Quote:
Originally Posted by sealeg View Post
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!
Have you checked this place out:

*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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Old 08-08-2013, 01:17 PM #4
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Default need help as well!!!

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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Old 08-14-2013, 07:01 AM #5
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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:
Originally Posted by bmod View Post
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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Old 02-05-2014, 11:40 PM #6
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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:
Originally Posted by sealeg View Post
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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Old 02-06-2014, 08:13 PM #7
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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:
Originally Posted by bmod View Post
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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Old 02-06-2014, 11:31 PM #8
husky601 husky601 is offline
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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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Old 02-06-2014, 11:58 PM #9
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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:
Originally Posted by husky601 View Post
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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Old 02-07-2014, 01:47 AM #10
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That's may be him. "His clinical work focuses on pediatric facial paralysis, nerve injury, hand surgery and micro-vascular reconstruction"

Yes i did have a first rib resection but din't work. I did lots of studying after my surgery about TOS and i tried lots of different treatment and i wasn't able to find something to manage my pain till i tried global postural re-education (GPR). It make a difference and i think i start to reverse the cycle but i still have lots to do.

I found some others trick like cold bath with ice cube on it for 5 minutes in the morning. Just cold water with lots of ice. It's making a huge difference at the point who i am able to relief pretty much 100% of my pain for few hours even for the whole day sometime. Also relaxing hot bath with epsom salt at night just before going to bed feels good to me.

There is only one thing who i think is good for everone here and it's global postural re-education. For the rest i believe it's different for everyone here. Not to be a bad person but there is to much people here who think they know how to heal with different method and they think everyone has to use the same way to heal so may be not a bad idea to not listening everyone here but must of people are realist and give their opinion which is great.

The truth is that substantially everyone react on different way to all the different treatment. Chiropractic is good for me but not necessarily for you as substantially all other treatments offered except the global postural re-education who i'm sure will help anyone here. Unfortunately there are not many of those and they are really hard to find in the US and i don't know why. In Quebec they are pretty easy to find, same in Europe. It's not to bad to find one in Ontario but there are not much in the US.

Anyway my opinion is posture and disciplines are the keys. For the rest i think you have to find your own tricks and reed the maximum as you can about TOS to understand what is TOS and maybe find out what type of TOS you think you have. If you are up to give you bit of hard time I suggest you to try a cold water bath with ice on it but i am not sure if it's good for everyone. One thing i know is it's freaking cold!!!


Alexis
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