Help finding care for Arterial Thoracic Outlet Syndrome

Posted by raingirl99 @raingirl99, Dec 8, 2019

I was diagnosed with Arterial Thoracic Outlet Syndrome & had surgery 3x (1996; 2003; 2011) in Denver, CO.My doc Charles O Brantigan retired & I have had issues finding docs who treat/monitor this condition. This condition is serious & needs attention since my life depends on it. it involves arterial/vessel harvest rt of brachial artery + rt subclavian artery (w/2-stents). I am on both medicare/medicaid. What doctors can help me?

@raingirl99, Good evening. I am not an expert on anything medical, especially TOS. However, we do have a very experienced and caring member named @jenniferhunter. Would you be able to help @raingirl99, Jennifer?

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@raingirl99 Welcome to Connect. I have thoracic outlet syndrome, but I have been treating it with physical therapy with myofascial release. My doctors advised against surgery because it creates scar tissue and can make TOS worse. My TOS was worse after my anterior cervical spine surgery and the scar tissue from the surgical paths was pretty close to the areas or compression from TOS. MFR can help break up surgical scar tissue and I have been progressing with this since my surgery. Is that something you have tried? I'm also wondering if you are anticipating more surgeries in the future. Are you in Denver? I looked at the Denver Health website and they list TOS as something they treat. I know there are different variations of TOS. I think mine was both neurogenic and with compromised circulation. My hands used to turn blue and cold, but that doesn't happen anymore. I had spine surgery on my neck and came to Mayo for that because they would understand both of those issues.

Did your doctor recommend anyone else when he retired? With Medicare and Medicaide, that may make it harder to find a facility that accepts this as payment. I'm sending some links to our Connect discussion on MFR that has a lot of information, and also a very detailed write up about TOS treatment from a physcal therapist in Europe. He explains in detail a lot of the technical issues with TOS and how he treats it. I don't think he uses MFR, so also look at that. There is a therapist finder on the MFR website.

When I came to Mayo for spine surgery, they also re-evaluated my TOS to determine which issue was the major cause of my symptoms. I had overlapping symptoms from both, but the spinal cord compression I had was the major problem at the time. I am 3 years post op and recently had a breakthrough with opening up tight fascia in the arm pit area where pec minor connects. That is one of the TOS compression sites, and it is possible to have multiple compression sites. You may want to try MFR if you haven't done this before. I have had a lot of improvement from it.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://trainingandrehabilitation.com/how-truly-treat-thoracic-outlet-syndrome/

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Hi @raingirl99,
This article from Mayo Clinic explains that there are 2 types of thoracic outlet syndrome. https://www.mayoclinic.org/diseases-conditions/thoracic-outlet-syndrome/symptoms-causes/syc-20353988
– Neurogenic (neurological) thoracic outlet syndrome.
– Vascular thoracic outlet syndrome.
– Nonspecific-type thoracic outlet syndrome.

Since you mentioned yours to be related to blood flow or vascular vessels, I moved your message to the Stroke & Cerebrovascular Diseases group: https://connect.mayoclinic.org/group/cerebrovascular-diseases/

@jenniferhunter has offered some great tips and resources. Might Denver Health or National Jewish Health be options for you?

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