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

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Old 02-08-2015, 12:54 PM #1
Bobby78 Bobby78 is offline
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I'm in a bad spot. I have been a VERY active person up until 4 months ago and this is killing my life. Everything I read points exactly to TOS and with all the testing I've undergone being normal, I would agree this being the culprit. There seems to be little hope when reading through tons of pages, threads, etc. Even surgery doesn't guarantee anything promising.

I go for my 4th PT tomm and 4th Chiro this week. I have had ZERO relief. Actually, my symptoms have increased on the left arm/neck. I have no other medical history and CANNOT just lie down and take this! I can't just quit my job and sulk all day. I WANT MY LIFE BACK!

This is making me depressed because I cannot enjoy anything. I awake every morning with the same hope that maybe, just maybe it'll be less bothersome than the day before, giving me some hope that stretching, PT, and Chiro are helping. Nope.

I'm a 36yo dude who wants to return to the active adventure lifestyle, yet I cannot even utilize my hands/fingers correctly. So is this what I'm facing for the rest of my life? Plenty of people here dealing with this for 10 years! I feel for those folks, you have my respect. I don't understand where to go or what to do next.
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Old 02-08-2015, 03:32 PM #2
kellysf kellysf is offline
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Bobby,

I'm sorry you're in this situation. I've had TOS for nearly 13 years, with unsuccessful surgery 10 years ago. I feel horrible now so can't type much, but I just wanted to say that the hardest thing, and the most important, is to try to not spin out into what this means for the future.

I was 40 when I got TOS, an active attorney with a four year old. It's been hard to lose so much of who I was. I miss swimming and playing softball, and being able to be a playful, physical mom and a worker. It has been a bummer; it is a bummer.

But I try to make peace with the reality of my life now, while still trying to identify ways that I might get better -- even in small ways. It's a tricky balance.

You are very new to this even though it probably feels like it's been going on forever. Can you tell us whether you had an injury, a cervical rib, neuro or vascular problems, etc? Many people can recover with rest and appropriate PT. In my opinion, it's really important to deal with this in the early stages. It gets harder the longer you've had symptoms.

I'm glad you found your way here.

Take care,
Kelly
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Old 02-08-2015, 04:03 PM #3
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Thanks for the kind words. I'm really trying to focus on some kind of hope. This is horrible...as you already know. Very sorry to hear of your long years and especially the unsuccessful surgery.

No cervical rib
No definitive injury
Not sure about vascular stuff
I've had no prior surgeries
I feel healthy otherwise

I desperately want to get back to running, working out, and ridng my motorcycle.
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Old 02-08-2015, 07:35 PM #4
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It took time for this to become a problem, so it will take a long time to make positive changes.. expert PT & DC will help, but much of the day to day work must be done by you.
*As long as no specific injury is found that surgery is needed.*


If you can fix most of this TOS thing - isn't it worth setting that "fun " stuff aside for awhile?
It isn't a quick fix thing at all...takes time , awareness & focus , and a lot of luck too..

Remember many that did recover, with or without surgery, don't stop in or post much any more..
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Old 02-08-2015, 08:09 PM #5
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Quote:
Originally Posted by Jo*mar View Post
It took time for this to become a problem, so it will take a long time to make positive changes.. expert PT & DC will help, but much of the day to day work must be done by you.
*As long as no specific injury is found that surgery is needed.*


If you can fix most of this TOS thing - isn't it worth setting that "fun " stuff aside for awhile?
It isn't a quick fix thing at all...takes time , awareness & focus , and a lot of luck too..

Remember many that did recover, with or without surgery, don't stop in or post much any more..
Thanks again Jo. I've been following some threads on here from "Hellothere" who apparently had a recovery. It gives hope when needed.

Sorry to vent folks! Everyone here dealing with this has my respect.
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Old 02-08-2015, 10:29 PM #6
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Hello Bobby! It's heartbreaking to hear your desperation as we have ALL been there. The next question is of course, where are you from?

I'm not saying PT and chiro don't help but they are rarely a cure. Heck, even surgery is not always a cure as you have seen. Because I am one of the people that wasted a year, spending money randomly on all these remedies, when in fact my veins and arteries were severely compressed, I would start with finding a vascular TOS specialist who can see if your blood is flowing correctly. Since you haven't had a definitive cause for these issues, there is a good possibility that the blood flow is the issue.

So let's take a deep breath and focus on getting some real answers from a specialist who knows what they are doing.
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