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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@donsbaby2016

Anyone out here who suffers from Thoracic outlet syndrome? Need some advice I am in so much pain with this.

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@donsbaby2016

Hi, and welcome to Connect.

I searched for that (Thoracic outlet syndrome) in the search window. All references that I see are posted by Jennifer @jenniferhunter , I'd suggest you read her posts or she might respond directly if she notices this mention of her Connect name. Jennifer is a good resource, very knowledgeable. If you need any more info about how to contact her (or anyone) let me or someone else know. Lots of helpful people are available for you here.

Best, Hank

Liked by Jennifer Hunter

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Anyone out here who suffers from Thoracic outlet syndrome? Need some advice I am in so much pain with this.

Liked by Hank

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@donsbaby2016

Anyone out here who suffers from Thoracic outlet syndrome? Need some advice I am in so much pain with this.

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Hi @donsbaby2016, you'll notice that I moved your message to this existing discussin about thoracic outlet syndrome (TOS) where you can connect with other members like @jenniferhunter and @raingirl99.

Donsbaby, what led to your having TOS – accident, sports injury, other? What treatments have you had? Do you do physical therapy?

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@donsbaby2016

Anyone out here who suffers from Thoracic outlet syndrome? Need some advice I am in so much pain with this.

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@donsbaby2016 I also have TOS and my hands used to turn blue and get cold and I could generate pain and spasms with my head and neck position. Myofascial release has helped me a lot. Can you share some more details or what your doctors have said you should try for treatment? MFR has given me better posture and helped TOS significantly. Here is our discussion where you can find more information. I'll be happy to answer any questions. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
There is also a lot of information at this link. https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/

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@jenniferhunter

@donsbaby2016 I also have TOS and my hands used to turn blue and get cold and I could generate pain and spasms with my head and neck position. Myofascial release has helped me a lot. Can you share some more details or what your doctors have said you should try for treatment? MFR has given me better posture and helped TOS significantly. Here is our discussion where you can find more information. I'll be happy to answer any questions. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
There is also a lot of information at this link. https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/

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I was never told I even had it until I read my medical records, I was told it was costocondritis so I have an appointment with my primary care doctor to find out exactly what is going on. When I find out more I will update.

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@donsbaby2016

I was never told I even had it until I read my medical records, I was told it was costocondritis so I have an appointment with my primary care doctor to find out exactly what is going on. When I find out more I will update.

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@donsbaby2016 TOS is most often missed by doctors unless it is within their specialty interest. There are a lot of variations of TOS and where it can cause compression on nerves and blood vessels. Some people have a cervical rib which is an obvious diagnosis on an X -ray. If you want an accurate diagnoses about TOS, seek out a specialist like a thoracic vascular surgeon at a teaching medical center such as a university with a medical school. This is glossed over in med school in a day, so a primary care physician may not know much about TOS. Look for a place that lists TOS as a condition they treat on their website. Diagnosis will involve changing the position of your head and neck and looking for impairment of circulation with the positional change. You may also be evaluated by a neurologist. You can see an MFR physical therapist without having an absolute diagnosis of TOS and that may be able to help what they have termed costochondritis; that may or may not be accurate and could be a suspected, but not confirmed issue. Why not ask for physical therapy while you are seeing your doctor? TOS can also cause chest pain and chest muscle spasms which therapy does help. You can search for an MFR provider on the MFR website at this link.
http://mfrtherapists.com/

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@jenniferhunter

@donsbaby2016 TOS is most often missed by doctors unless it is within their specialty interest. There are a lot of variations of TOS and where it can cause compression on nerves and blood vessels. Some people have a cervical rib which is an obvious diagnosis on an X -ray. If you want an accurate diagnoses about TOS, seek out a specialist like a thoracic vascular surgeon at a teaching medical center such as a university with a medical school. This is glossed over in med school in a day, so a primary care physician may not know much about TOS. Look for a place that lists TOS as a condition they treat on their website. Diagnosis will involve changing the position of your head and neck and looking for impairment of circulation with the positional change. You may also be evaluated by a neurologist. You can see an MFR physical therapist without having an absolute diagnosis of TOS and that may be able to help what they have termed costochondritis; that may or may not be accurate and could be a suspected, but not confirmed issue. Why not ask for physical therapy while you are seeing your doctor? TOS can also cause chest pain and chest muscle spasms which therapy does help. You can search for an MFR provider on the MFR website at this link.
http://mfrtherapists.com/

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I’ll look into it thank you and yes I get the chest pain that goes through to my shoulder blade and the neck pain it is awful and excruciating

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