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

aTOS vTOS nTOS Trifecta in San Diego

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Old 09-12-2017, 01:05 PM   #1
BFPengi
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Confused aTOS vTOS nTOS Trifecta in San Diego

Hi All,

So, I've just been seeing a Dr. for nerve pain in my neck and left shoulder that shoots down my left arm. He suspected Thoracic Outlet Syndrome. After additional examination he suspected arterial involvement and I had an MRI with contrast which confirmed his diagnosis. I have severe compression of my subclavian veins and arteries. And, by the way, while it is indeed worse on my left side, it is bilateral. YAY! I am a fan of symmetry.... sigh...

The internet seems to be full of information on nTOS, but getting information on vTOS/aTOS seems difficult. Even when I find an article or a professional that claims knowledge in the condition, all the information seems to be generic nTOS info. It's very frustrating. In addition, the only surgeon's name that seems to come up frequently in the San Diego area is Dr. Justin Brown who specializes in nTOS. It seems if surgery involves the veins and arteries he brings in another specialist. After wrestling with this for a while and not really seeing other options, I decided I would just go in for a consultation. Well... he is in the process of moving and is no longer accepting San Diego patients so now that's not even a option anymore.

I know that the neurosurgery department at UCSD is top notch so I'm not worried about that side of things. But do I need a vascular specialist? How about a neurovascular surgeon?

I know that there are lists of Drs. on this board, but it is very outdated or they are just a list of names that don't say if they are even recommended or not and they don't say if they are knowledgable in vTOS/aTOS.

Does anyone have any recommendations for a surgeon here in San Diego (preferably UCSD) that is well versed in vTOS/aTOS?

Or... do any of you have glowing recommendations for your vTOS/aTOS surgeon, even if they are not located here? I assume it is a very small community and if I can't find any recommendations for San Diego, I'll just contact the surgeons outside the area and maybe they have recommendations for me.

Also... I would love some surgery stories specifically related to aTOS or from those of you who are in the Trifecta Club, so please feel free to post them here.

Thanks in advance for your help!
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Old 09-12-2017, 09:17 PM   #2
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Our Drs & PTs list is for TOS knowledgeable practitioners. If you go to the last pages those are the most current posts. Some of the early listed Drs are still practising and some have retired.
You can also use the search tool for any names listed to find if a member made a post about them..
https://www.neurotalk.org/search.php
Here is a post listing some Orange county providers -
https://www.neurotalk.org/895217-post63.html

A member has a Ca based info site -
TOSS: Thoracic Outlet Sydrome Society

From past posts , I think an experienced highly ranked Vascular surgeon might be what to search for.

If you haven't tried some expert PT /DC for posture and misalignments corrections first, I'd really suggest giving that a good try.
It may take a year or two to see best results , plus a lot of self care time at home..

Surgery may not be a total fix.
*approx 75% do OK, but that means 25% do not go OK..

To learn as much as possible before you go forward explore our sticky threads-
Trigger point information {TrPs} for short
Our Useful Links - Websites, Articles & Polls
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Old 09-13-2017, 11:10 AM   #3
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I made sure to check out both lists before posting. One list did not have any current info on San Diego and the other did not have any San Diego Drs. at all.

I will continue to do Google searches and search through these threads, but I figured I can also just ask questions. Sometimes its difficult to research something when you don't know much about it to start. Like, I was sent to the neurosurgery department, but should I be considering a vascular surgeon? How would I have even known to ask this question? I agree with you. I'm leaning towards vascular... But it took me a few weeks to get there. And now I've come across neurovascular.... hm...

As for PT, while it is the recommended treatment for nTOS, it does not help with vTOS/aTOS. Nevertheless, I have been (and still am) in PT for 2 years specifically working on this problem. Why not? I also have nTOS. Maybe it will help with that. I have also tried Chiropractic, postural correction, massage, trigger point, acupuncture, TENS, etc. And I will continue to do whatever is suggested to me that doesn't seem too dangerous. If a reputable person tells me to sit out in the woods for 3 days with a poultice of herbs on my neck singing cumbaya, I will try it if they really think it will help. Someone wanted to try "energy work" on me the other day. Whatever. What could it hurt? And really I've been in PT on and off for this problem for about 30 years, I just did not know that's what I was working on at the time. My house is filled with all sorts of failed "tools" that I have purchased over the years.

What I'm trying to say is, I'm not one of those just give me a quick fix, surgery happy people. Actually, I am quite adverse to having someone slice into me and cut out my ribs. I really think that my ribs belong on the inside of my body. But I also do my research and I listen to logic and reason. If that is really the only way to fix this, then that is the only way to fix it. However, it would be nice to find someone with a little bit of knowledge and experience to do it.


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Old 09-13-2017, 06:17 PM   #4
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Good to know that additional info on what you have tried.
The more information you share about your treatments/testing/therapies so far will help get the best replies..

Did PT or anyone try top rib mobilisations?
Manual trigger point work?
Low level /soft/cold laser
IF stim?
Sharon Butler type gentle stretching program?
some or a mix may be helpful..
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Old 09-13-2017, 06:45 PM   #5
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Member Coop42 has made some recent threads here on the TOS forum with info & many self care things to try..
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