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!

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.

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!

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!

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?

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!!!!

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

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

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

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:eek: 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

I agree with you that posture is a huge deal. I've been working on mine for almost four years now and improvements come very slowly, but I've had TOS for more than 30 years. It's a lot more than just standing up straight. It's about restoring balance to the entire body and getting everything working together as one functional unit. It takes a lot of knowledge but I'm learning more about it all the time.

Check out Dr. Al-Omran, head of vascular surgery at St. Michael's, who is now doing the surgery there. He did my surgery where he removed my first ribs and scalene muscles.

**
Also check out Dr. Mark Leung if you are looking for an initial diagnosis. After many many doctors he finally had the hunch of TOS.

**
**

Both are based out of Toronto.

Hi, I'm a 19 year old male based about 45 minutes North of Toronto and suffer chronic pain through my upper extremities on a constant, daily basis. I havent been officially diagnosed but through vast research over the past year and frequent hospital visits with no results, I'm fairly certain I have Neurogenic Thoracic Outlet Syndrome and I don't know what to do.

About a 15 months ago I went swimming in a public pool at night with some friends and accidentaly dove head first into the shallow end of the swimming pool. I could move my head for a month, i got xrays and they said i was okay, my head started to get better and i started working full time on an assembly line. after 6 onths i had to quit because i was suffering eexcrusiating pain by working. Ibuprofen did nothing.

I now have to stretch my shoulders and crack my neck on constant basis to keep my neck and head from seizing up in pain. I cant lift my arms above my head, my vision goes dark when i take a deep breath, my lymph nodes are always swollen and there are lumps forming on my esophagus. and i have had a blind spot in the center of my right eye for 2 months, I cant wear a backpack, i cant drive because i start to swerve whenever i have to crack my neck which is about every 5 minutes or so. I now work 3 shifts a week at a convenience store and even that's over baring to do, the pain's taking control of my life and every doctor i go to tells me im fine.

TLDR: Does anyone know of a Neurogenic Thoracic Outlet Syndrome Specialst in Ontario because I feel like I'm dying.

Hi, did you have a detailed cervical screen? MRIs are necessary not just x-rays for any disc related issues.

also, please try not to crack your neck too much, you could be contributing to cervical instability by weakening or spasming your overactive muscles.

a possible alternative could be to take some pain relieving gel and deeply massaging your muscles.

A vascular surgeon can also dx & treat NTOS I believe.. they aren’t limited to Vascular issues only..

So you had a concussion or possible TBI from the pool diving? You hit your head?
That can cause quite a few issues also..
If so you might benefit from some upper cervical chiropractic care.. it is not scary, if you are leery of general chiropractic the upper cervical is so gentle. look it up on you tube.. but basically your c 1 c 2 probably got really misaligned when you hit your head in the pool..
info-
www.upcspine.com
http://www.upcspine.com/self.htm

A full cervical MRI should be done as mentioned..to clearly rule in/out any injury.

Have you had any expert PT at all?
They can do some positional & other testing during the evaluation..

I have been looking up upper cervical chiropractic on the net, but can't find any evidence to support it.

Did it help your symptoms Jo mar?

Yes, but I know I had a concussion event at age 15 , and my shoulders, hips even eyes & ears have been slightly off level for quite awhile.
So it made sense to me after I found out about upper cervical..

Plus the chiro was a multi modality practitioner, so soft tissue /posture was addressed also.

If anyone has had any head/shoulder hits or falls , sport injury, it might be a good thing to look into..
Many w/TOS do report uneven shoulders..and later on hip problems...

Some upper cervical hard liners will say it will fix everything.. but I and many others on the PCS/TBI forum don't agree with that, we feel many other therapies are valid and a mix is needed for each individual..

No i have not. I've been trying to get an MRI for months and I just had to change my family doctor because my old one kept insisting i was fine, and that i just have muscle soreness and gave me a celebrex prescription which ultimately worsened my condition.

I have a massage scheduled for tonight and an appointment with a chiropractor tomorrow who specializes in head trauma after upper cervical treatment only provided me with temporary relief.

I'll try 3 treatments with this new chiropractor and if that doesn't prevail, I've been recommended an Osteopath

I have no idea. Anything could have happened to me after that pool accident but I wouldn't have a clue because apart from the chiropractor who took a look at my x-rays, everyone i've been to has told me I'm completely fine. And having such severe damage to my neck go untreated for 15 months, it's possible many more complications have arisen.

I'll make sure i mention all of this to the chiropractor im going to see tomorrow. I've been suggesting PT and asking my doctor for an MRI for months but he has had no interest in helping me from the start. Due to my young age, I believe he thinks me to be another teenager complaining about non existent symptoms in order to get pain killers or pot or something. My first appointment with my new doctor isnt till Nov. 2nd so I wont be able to get an MRI until sometime after then, unfortunately

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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Hello Abettertomorrow, I am wondering how your surgery went with Dr. Al-Omran and which type of TOS you had. I am hoping you had success and would like to know more about your diagnosis, surgery and how you are feeling post surgery.

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