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


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Old 08-12-2018, 07:40 PM #1
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Default Searching for Neurogenic TOS help in Toronto

Hello

My daughter has recently been diagnosed with moderate to severe neurogenic TOS.

We are looking to see if anyone has had any success with any of the following in Toronto and if so, which Dr., Clinic, physiotherapist, chiro, accupucturist etc. they had success with. My daughter moved to Toronto for school, so we don't have good connections or even a regular doctor in Toronto. She currently is waiting for a 2nd opinion with vascular surgeon.

1. Surgery?
2. Physiotherapy?
3. Chiropractor?
4. Accupuncture?
5. Massage?
6. Sports Doctor?
7. Osteopath?
8. Physiatrist?

Looking for any help in finding any of the above who specifically specialize in TOS, if you have had success.

Hoping to find one clinic with a doctor who will direct other specialists as to what services/physio is needed.

Thank you in advance for any assistance at all you can provided.
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Old 08-12-2018, 11:42 PM #2
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If you can describe her most bothersome symptoms & locations of them, we might be able to also give suggestions for self care, PT /Chiro or specifics to ask drs about..

Do you know what might have caused her TOS ?
Or possible causes..like -
previous whiplash
extra C ribs
forward head/shoulders posture
Repetitive strain- chronic /multiple injuries
accident or sports injury
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Old 08-13-2018, 08:46 PM #3
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Quote:
Originally Posted by Jo*mar View Post
If you can describe her most bothersome symptoms & locations of them, we might be able to also give suggestions for self care, PT /Chiro or specifics to ask drs about..

Do you know what might have caused her TOS ?
Or possible causes..like -
previous whiplash
extra C ribs
forward head/shoulders posture
Repetitive strain- chronic /multiple injuries
accident or sports injury
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My daughter competed in natural physique competitions. After succeeding at the regional and provincial level, she was set to compete at the national level. Due to pain and fatigue in her arms she was unable to compete. We are unsure if the TOS came from lifting weights (repetitive weightlifting/sports injury) or a possible impact injury in a lake. She noticed the pain and fatigue gradually increasing over a few months.

The first sports medicine Dr. in our hometown she was referred said TOS tests of Adson's were negative. Xray's indicated no accessory rib.

Based on ultrasound results my daughter was diagnosed with Bilaterial Pectoralis Major Tendinopathy, Supraspinatus Tendinopathy. She went to Chrio, physio, accupuncture, massage and a natropath for the past year with that diagnosis.

After seeing no improvement and in fact more fatigue and pain when lifting her arms to even brush her teeth or hair, she went to a sport medicine specialist in Toronto. He suspected TOS and recommended a vascular ultrasound which came back indicating moderate to severe TOS.
The surgeon she was referred to and saw last month, no longer performs surgery and even if he did, he indicated he would not recommend surgery until she was pretty much disabled. He indicated the TOS was Neurogenic. She is scheduled for a 2nd vascular ultrasound and waiting to see a 2nd surgeon in Toronto.

She has been unable to work her upper body at all for the last six months and only lift light weights for at least six months before that. It hurts as noted to even do the smallest tasks when raising her arms. She recently graduated from Culinary Nutrition school, works part-time in a health food restaurant (which requires use of hands and arms extensively) and works part-time at a gym (which requires arm movement). She is continuing to go to school online taking a Strength & Conditioning certificate with plans to be a trainer who also provides guidance on nutritional meal planning. It is difficult to work 5 days a week and take notes for school and the pain has started to cause loss time at work and play a toll on her physically and mentally.

She is not unhappy with her Chrio, acupuncturist, massage or physiotherapist, but would like to belong to one clinic that hopefully provides specialists in TOS, i.e. sports medicine doctor, physiotherapist, chrio, osteopath, etc. The physio she took for 6 months was not targeted for TOS, but for her original diagnosis, so hoping to find a physiotherapist with experience with TOS. Currently she is going to various clinics and no one person is following her progress.

We are not sure if the 2nd surgeon will recommend surgery or phyiso, etc. but wanting to have names of anyone that comes recommended as being successful in assisting others with their TOS, and wondering if they have had success with any surgeons. When searching online, a number of clinics in Toronto speak about TOS but they don't identify anyone specifically who specializes in TOS in their BIOs. We don't want to waste more time if possible, going to various specialist by trial and error, if we can find ones highly recommended. She wants desperately to reduce the pain she is in and hoping some members have had success in doing so in the Toronto area.

My daughters preference is a clinic with the various specialists in the Downtown Toronto, but would like to know if anyone has had success with any of these types of specialists or any surgeons in Toronto, Ontario, Canada to gather a list of possibilities.

We are interested to know as well if anyone has had success with any of the garments created to address their posture and create more space in their thoracic outlet area, i.e. intelliskin shirts, as her chiropractor recommended wearing one as taping provides some temporary relief.

Thank you to anyone who is able to share successes/names, etc.
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Old 08-14-2018, 09:38 PM #4
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I would suggest she stop all weight work & muscle development....hyper tropic muscles in the neck & pecs can crowd that area and some of us can get major problems from that..as well as fwd head posture/rolled shoulders too.

Change to fluid whole body activities if she needs to do something active..
See Sharon Butler - gentle stretching -- Repetitive Strain Injury

Have any of the providers done top rib mobilizations?
My top ribs had gotten raised & stuck from severe spasms, it took a PHD PT teacher to do the rib mob and it worked wonderfully..and instantly...afterwards I could drive with arms up for 40 + mins, stir food while cooking , garden, so much more back to a more normal..... I had been limited to 10 mins of arm use before..
After the PT guy dropped my ribs , at my next chiro appt I told him about it, so he added top rib adjusting for me to keep it holding.. no issues with it since.
any trigger point work ?
(you can't fully resolve muscle spasms if there are trigger points in those muscles)

I did stop work and take a lot of time to learn & focus on healing the best that I could...
Took me 2+ years but it was worth it, part of the time frame was slow due to work comp delays. but i could still do my self care stuff, and use my IF stim, far infrared heating pad and do self trigger point & stretching stuff..
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Old 08-14-2018, 10:17 PM #5
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Quote:
Originally Posted by Jo*mar View Post
I would suggest she stop all weight work & muscle development....hyper tropic muscles in the neck & pecs can crowd that area and some of us can get major problems from that..as well as fwd head posture/rolled shoulders too.

Change to fluid whole body activities if she needs to do something active..
See Sharon Butler - gentle stretching --

Have any of the providers done top rib mobilizations?
My top ribs had gotten raised & stuck from severe spasms, it took a PHD PT teacher to do the rib mob and it worked wonderfully..and instantly...afterwards I could drive with arms up for 40 + mins, stir food while cooking , garden, so much more back to a more normal..... I had been limited to 10 mins of arm use before..
After the PT guy dropped my ribs , at my next chiro appt I told him about it, so he added top rib adjusting for me to keep it holding.. no issues with it since.
any trigger point work ?
(you can't fully resolve muscle spasms if there are trigger points in those muscles)

I did stop work and take a lot of time to learn & focus on healing the best that I could...
Took me 2+ years but it was worth it, part of the time frame was slow due to work comp delays. but i could still do my self care stuff, and use my IF stim, far infrared heating pad and do self trigger point & stretching stuff..
Thank you for suggestions. She has not done any upper body weight lifting, she has only been working out her legs. I will definitely share the link with her. She is coming home for a week and we plan to spend time reviewing all the info I have been researching and documenting a pain journal to have available to discuss with next surgeon and any future specialists. We will review info on this site as well. She has tried trigger point therapy as well with little success. Shockwave, bladding and tapping seem to provide some relieve, although they are short lived.

I have read about the top rib mobilization recently and will have her talk to her Chrio for sure about it now that you indicate you had success. I have on the list for her to ask about Upper Cervical Chiropractic as well as I read some success stories with it. This is why I am hoping to find a clinic which has chrio, physio, etc. specializing in TOS. Hopefully they would be aware of all the options to try with her. It almost sounds like its trial and error to see what find works for each individual and of course I worry if someone doesn't know what they are doing they could do more damage than good. I don't know if that could have even been the case with the physio, chrio, massage etc. she was doing with the other diagnosis, i.e. if any of the work made her TOS worse.

Because this is not WSIB injury or accident with insurance, there is no income supplement if she is not working, but she does understand she has to reduce the stress on her arm movement and is trying to when she can. HOpefully a week at home will give some relief, but I am sure it will only be temporary. Really hoping to find some relieve with PT/Chrio and Massage if can find the right people.

Do you know if vascular surgeons provide those type of recommendations?

When we saw the 1st surgeon and we asked if PT, Chrio, Massage or Accupuncture would help, he said no, she has to stop doing anything that causes pain. This was very upsetting as even brushing her teeth hurts, so wonders how she is supposed to stop doing everything. We are hoping the next surgeon will provide more hope that some of these services could help.

Glad to hear you are doing well.

Do you get flare ups or times when you overdue it again or are you pretty much back to a normal state of being able to fully utilize your arms and have normal strength?

I just looked up IF Stim to see what it is and realized I read about it as well. Did that help and do you recommend it? Do you know as well if it would be covered under regular perscription appliance benefits?

Many questions, hope you don't mind. Happy to have someone to talk to. Researching TOS has become an obsession for me, trying to find anything to help my daughter.

I had to remove the link you included as it said I couldn't post yet with links.
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Old 08-14-2018, 11:09 PM #6
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Hate to say it but surgeons are usually surgical focussed, unless they are TOS specialized and have associated PT clinics or such that they personally recommend..

It is so individual as to what factors might be the reason for each person's TOS..
If you can find a way to track down a top Physical therapist /body worker that really does a complete eval, hands on ful history.. it may take many tries to find a really good one..

You can use the site search for specific symptoms to find past posts on those..
and the sticky threads have lot more info on many aspects of TOS.
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Old 08-15-2018, 11:00 PM #7
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Quote:
Originally Posted by Jo*mar View Post
Hate to say it but surgeons are usually surgical focussed, unless they are TOS specialized and have associated PT clinics or such that they personally recommend..

It is so individual as to what factors might be the reason for each person's TOS..
If you can find a way to track down a top Physical therapist /body worker that really does a complete eval, hands on ful history.. it may take many tries to find a really good one..

You can use the site search for specific symptoms to find past posts on those..
and the sticky threads have lot more info on many aspects of TOS.
Thank you again. What you recommend is exactly what we are looking for and what inspired me to join this support group. I am hoping anyone who had success in Toronto with TOS will reply and advise who they had success with. It is so difficult to know who t trust and who really has experience with TOS without recommendations.

We purchased an intelliskin top today. As my daughters says the most expensive top she has ever purchased and the least appealing. Hoping it gives her some relief. Will let everyone know if it helps her.
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Old 09-01-2018, 01:31 PM #8
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Default Neurogenic and Vascular TOS

My daughter has now been diagnosed with bilateral Neurogenic and Vascular TOS. The news just keeps getting darker.

The first surgeon said neurogenic and did not recommend surgery and pretty much told her there was nothing to do to stop the pain and new surgeon is saying should have surgery as believes vascular as well. She is scheduled for a CT Scan with dye to I gather determine where the compression is occurring.

Wondering if anyone out there has had both types and if they have had surgery what the outcome was.

Still looking for recommendations for physiotherapist, sports medicine dr, etc. in downtown toronto.

Anyone have any info to help?
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Old 09-03-2018, 07:04 PM #9
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Many had good things to say about Dr. Al-Omran at St. Mikes Hospital in the Toronto area.

The neurotalk forums are invaluable as the forum format lends itself much better to being able to search up past posts and view replies in a timeline based manner. If you are looking for specialists in a particular area, the "Thoracic Outlet Syndrome (TOS) Support Group" on facebook may be able to offer recommendations as well. I only bring up the facebook group because someone literally posted about toronto doctors half a month ago, and I remember they were able to get some feedback about it. (that's where I got the recommendation for Al-Omran from). Its a bit more chaotic to sift information from, but its large member base has its benefits.

I've been lurking here since June, mainly to absorb information about the condition. I developed it in May, and since starting physical therapy on June 15th, have seen a dramatic reduction in my symptoms. Much of the information on the forums here has been very helpful!
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Old 09-04-2018, 06:34 PM #10
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Many had good things to say about Dr. Al-Omran at St. Mikes Hospital in the Toronto area.

The neurotalk forums are invaluable as the forum format lends itself much better to being able to search up past posts and view replies in a timeline based manner. If you are looking for specialists in a particular area, the "Thoracic Outlet Syndrome (TOS) Support Group" on facebook may be able to offer recommendations as well. I only bring up the facebook group because someone literally posted about toronto doctors half a month ago, and I remember they were able to get some feedback about it. (that's where I got the recommendation for Al-Omran from). Its a bit more chaotic to sift information from, but its large member base has its benefits.

I've been lurking here since June, mainly to absorb information about the condition. I developed it in May, and since starting physical therapy on June 15th, have seen a dramatic reduction in my symptoms. Much of the information on the forums here has been very helpful!
***

Thank you for responding. So happy to hear from someone in Toronto and that you heard good things about Dr. Al-Omran. He is the second surgeon my daughter saw and he seemed to be very thorough in his appointment with my daughter. First surgeon suggested neurogenic and no surgery. He is suggesting there maybe a vascular component and recommending surgery. Waiting for CT Scan to be scheduled and then see him again.

I actually joined the facebook support group 2 nights ago and haven't had a chance to look at older posts, but will definitely try to see what was said about Dr. Al-Moran.

Did you see Dr. Al-Moran yet and if so, did he recommend physio.? Are you willing to share name of physiotherapist as my daughter was going to one but not for TOS and looking for recommendations. Hoping it will help with the neurogenic portion of TOS while waiting for surgery if that is final recommendation after CT Scan.

Glad to hear you are seeing improvement with physio.
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