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Thoracic Outlet Syndrome

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Unread 05-07-2013, 03:13 PM   #61
fdupshoulders
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He also says there is no such thing as only Neurogenic. He says that by nature, nerves have blood flow, so it is always vascular as well.

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Thanks- I just have NTOS and Degenerative disk disease with Osteophytes and foraminal narrowing in my neck.do you think he would be able to tell where the pain is coming from? Is your insurance covering it all?
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Unread 05-07-2013, 04:11 PM   #62
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I'm seeing a DO--one that I had to find that was highly rated. I travel over an hour to see her, and she doesn't seem to want to address TOS at all because she thinks my hands should be blue and there should be pain all the time, which isn't the case for me.
I'm new in my area and the closest doctor of any kind is 45 minutes from me.
I found the list of DRs & PTs in NY, so I guess I'll have to go to one of those to get a diagnosis.

I never heard of a MRNeurograph. Can my DO prescribe this? I would go to King of Prussia if it would help me. Thanks
You don't ha e arterys involved if you arm doesn't turn blue. A vascular surgeon wouldn't help. The MRNeurograph would help diagnosis exactly which TOS you have. You probably have nerves involved and as long as you don't raise the arm you are not irritating it. Doesn't mean you don't have TOS. Sounds very possible. Google MR Neugraphy. I don't think you need another doctor to order it. They can probably just work it out. Hope this helps.
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Unread 05-07-2013, 04:19 PM   #63
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I had same experience at Mayo Clinic and Cleveland Clinic. They both said I needed a psychiatrist. I have tried to talk to both about their diagnosis. I have absolute proof I have TOS that involved a couple of kinds
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Unread 05-07-2013, 05:29 PM   #64
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My arm has never been blue or white or experienced any other discoloration, but Dr. Collins' MRI/MRA/MRV showed compression of my subclavian artery. An ultrasound that I mentioned earlier shows it as well. A vascular surgeon will help you. I hope that you listen to the good advice given on these threads and weed out the poor and uninformed advice.

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You don't ha e arterys involved if you arm doesn't turn blue. A vascular surgeon wouldn't help. The MRNeurograph would help diagnosis exactly which TOS you have. You probably have nerves involved and as long as you don't raise the arm you are not irritating it. Doesn't mean you don't have TOS. Sounds very possible. Google MR Neugraphy. I don't think you need another doctor to order it. They can probably just work it out. Hope this helps.
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Unread 05-07-2013, 05:53 PM   #65
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Have you chosen a surgeon for your surgery? Did Dr. Collins recommend surgery for you? Just wondering because a few ppl on another TOS forum said he has steered them away from surgery.

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Yes, he will be able to see what compression, if any, is going on. I don't believe that he does cervical MRI's and I don't know if he'll be able to comment on that. I also have an MRI report that mentions foraminal narrowing, but I've had several spine surgeons say that it is very mild. I plan on getting a cervical epidural in the next few weeks just to make sure I don't get any pain relief from that before I go into TOS surgery in a month.

My insurance does contract with UCLA but my claim got denied because I unfortunately wasted authorizations getting a brachial plexus MRI from a radiologist that doesn't know TOS and also a (according to Collins) pointless MRN. Hopefully the doctor that ordered it will help me to appeal it.
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Unread 05-07-2013, 09:39 PM   #66
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I'm meeting Dr. Gelabert tomorrow and I'm pretty sure that I'm choosing him. Dr. Collins said that he doesn't tell patients what to do because that is the surgeon's job. He did say that he would definitely give PT a shot before going into surgery, and if I do go into surgery he recommended Gelabert. I've been in PT for the past year (without the TOS diagnosis) and currently seeing Ando & Aston. Unless something changes soon with Ando, I'm going forward with the surgery.

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Have you chosen a surgeon for your surgery? Did Dr. Collins recommend surgery for you? Just wondering because a few ppl on another TOS forum said he has steered them away from surgery.
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Unread 05-08-2013, 02:36 AM   #67
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Oh yes, I really don't think there's anyone that knows TOS more than him. He saw all kinds of compression both in relaxed and hands-up positions. He told me what my symptoms were before I told him. for example, no doc has been able to explain the leg pain/tingling/numbness that I have developed in the last couple months. He knew that it was there because of blood getting diverted away from my spinal canal and to my arm because of compressed arteries that weren't getting blood to my arm.
That's fascinating because I also have the leg symptoms on the same side as my TOS and often felt there could be a connection between them, but didn't know what it would be.

Does the MRI help show the specific areas of compression, such as scalene triangle, clavicle and pec minor? Did you get more details out of this on why/where you have compression? And if you did, would that help the PTs?
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Unread 05-08-2013, 12:04 PM   #68
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Quite a few of the long timer's w/ TOS would eventually mention low back or hip pain.

I think there is an image or sketch in the sticky thread.. on how we can get tilted , partially due to pain or protecting of the worst side..hmm can't find the one I was thinking of.. it was a simple stick figure drawing...

Basically it is partially due to how the fascia is all connected, and the whole body compensations we make for usage or to avoid pain.

this site touches on the "whole" misalignment issue-
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2953353/

A well rounded whole body therapy approach is best, don't focus only on hands, arms, neck etc..
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Unread 05-08-2013, 01:10 PM   #69
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Make sure u dont have a trendelburg gait re: legs and tos

So if i passes my doppler test, i do not have vasc tos right?
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Unread 05-08-2013, 07:59 PM   #70
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Yeah, look into the Batson's Plexus.

Yes the MRI showed the compressions. I'll post or send you the report when it's complete. I was in too much pain during my visit with him to comprehend everything that he was saying.

I'm not sure if it will help the PT's much but I plan on sending everyone I work with a copy of the report as soon as it's done. (I also plan on sending a mass e-mail with the report to every doc that has misdiagnosed me in the past 2 years)

Dr. Collins thinks the reason I developed TOS is because I put on too much muscle for my small body frame. I'm currently 6' 170 pounds but when it first started I was a muscular 6' 210.

Did you see my response to you about deferred payment for medical treatments?

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That's fascinating because I also have the leg symptoms on the same side as my TOS and often felt there could be a connection between them, but didn't know what it would be.

Does the MRI help show the specific areas of compression, such as scalene triangle, clavicle and pec minor? Did you get more details out of this on why/where you have compression? And if you did, would that help the PTs?
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