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

You won't believe this

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Unread 11-21-2012, 06:59 PM   #1
rjewels13
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Default You won't believe this

My family doc sent me to a neurologist to get a second opinion about this TOS. He doesn't think I have TOS. He's positive I have Raynaud's. And you know what? Almost a month ago he prescribed me a calcium channel blocker to take 3x a day and I have been pretty much PAIN FREE since! Seriously! My coldness is less frequent and I don't have the knots under the arm and the shoulder feels amazing. I can raise my arm above my head without any pain or tightness now.

So, does this mean I for sure don't have TOS? I don't know! My PT still believes I have mild neuro TOS b/c of posture mostly.

I just wanted you all to know again what is working for me and how awesome I feel. If this is what I've had all along and a simple pill 3x a day works, then I'll take it!

Happy Thanksgiving!!!
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Unread 11-22-2012, 10:31 AM   #2
TOStrojan
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I am glad you are feeling better. Please tell us the name of the calcium channel blocker and the amount you take 3x/day. Thanks

By the way, it is possible that you DO have TOS and the calcium channel blocker is just treating one of the major upstream problems TOS gives us.
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Unread 11-22-2012, 03:17 PM   #3
rjewels13
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Quote:
Originally Posted by TOStrojan View Post
I am glad you are feeling better. Please tell us the name of the calcium channel blocker and the amount you take 3x/day. Thanks

By the way, it is possible that you DO have TOS and the calcium channel blocker is just treating one of the major upstream problems TOS gives us.
I take Calan 40mg 3x a day. The generic is verapamil.

Can you describe what you mean when you say major upstream problems that TOS gives us?

If you truly have TOS, wouldn't you have compression all the time? Not just in cold weather? I still apparently don't understand this TOS stuff.
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Unread 11-24-2012, 02:38 PM   #4
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I am not aware of your H&P or S/SX ---- for example I was not aware that your sx only occurred when it gets cold. That is why I say it is "possible". Advice on this forum is not meant to replace the advice of your doctor (who hopefully is a TOS expert). However, people who have TOS and lived with it for years have learned some things that doctors might not be aware of or dont believe in (for example, MD's don't typically believe in chiros or accupuncture).
When I say "upstream", I mean a cause that is further up in the order of things.
Gotta go --- I'll try to post with a better explanation later.
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Unread 11-24-2012, 03:45 PM   #5
winic1
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I take verapamil 80mg twice a day. has not made any difference in the vTOS. Does mostly control the racing heart rate I get when I move my tos arm wrong and trigger the blocking of the blood vessels.
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Unread 11-24-2012, 03:54 PM   #6
Jo*mar
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Quote:
Originally Posted by rjewels13 View Post
I take Calan 40mg 3x a day. The generic is verapamil.

Can you describe what you mean when you say major upstream problems that TOS gives us?

If you truly have TOS, wouldn't you have compression all the time? Not just in cold weather? I still apparently don't understand this TOS stuff.
I think there are varying degrees of TOS, and those with a major myofascial component will feel the weather changes more.
Many w/TOS tend to get some version of fibromyalgia after some amount of years have gone by, and that is usually quite weather
reactive.

There is the disputed TOS too, it doesn't fit clearly with NTOS or VTOS, bit is some sort of chronic thing (RSI) with many TOS like sx..
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Unread 11-28-2012, 12:50 PM   #7
TOStrojan
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It is possible that your raynauds has a vasospasm component to it and the cold weather exacerbates it (causes the vasospasming to occur or makes it worse). Perhaps that is why your Dr gave calcium channel blocker ---- to stop the vasospasm.
An example of what I mean by "upstream": Lets say someone has TOS and is prescribed opiates for pain. This may help with the pain, but it won't deal with the problems of TOS. Opiates for pain is more downstream than drugs for, say --- neuroinflammation and neurosensitivity (if they existed). If you were given drugs to treat that, it would have a better effect on your TOS situation because neuroinflammation, etc is more upstream than pain. Prolly not the best example, but just trying to illustrate what I mean.

I hope you don't have TOS and the calcium channel blocker is all you need. Take care.
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Unread 12-18-2012, 12:39 PM   #8
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i have chronic numbness in all fingers

this couldnt be caused by raynauds right?
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