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

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Old 12-19-2006, 02:08 PM #1
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Question for all you - I would like to avoid surgery at all costs. I've been doing PT/stretches, etc, and i'm in the 3rd week of Managing Main before It Manages You, in addition to all my medication (yipee). I'm just wondering what else you could recommend or what you have done..... also - since i've been to see the 1 doc in memphis that i know of who performs the rib removals, is it worth it to try and get an appt w/ Dr. Brantigan or someone else? Its just something I've been pondering for a while. anywho - i hope you all are having great days!
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Old 12-19-2006, 07:46 PM #2
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Hi Dabbo,

Sounds like you are really on top of it in terms of everything you are trying to manage your pain..... probably far ahead of where I was at that stage in the game! I think you're onto something about heading to Denver though - that is something I would really, really encourage you to do as soon as you possibly can get an appointment with one or maybe even two of the Denver Docs of your choice. The reason I say that is because I cannot describe how good it feels to go see one of the experts and definitively know (or not) what is wrong with you. Not to say your current Doc isn't on top of it, it's just that the Denver guys - this is all they do. You can really get some clarity on what is going on, feel confident about your treatment plan, etc.

Don't worry that if you go out there you'll be pressured into surgery - most of them agree that surgery for TOS is the treatment of last resort (unless of course it something clear cut like cervical ribs or life-threatening venous or arterial involvement); but you will be laying the groundwork for surgery as a potential future option if conservative measures don't work.

As for other things to try, hmmmm... the only other thing I can think to add to your list is something called Feldenkrais. It was suggested to me by my surgeon, Dr. Sanders. Feldenkrais can sort of be described as retraining your body mechanics to work more properly, for instance using your arms as levers like a machine and things like that. It was somewhat helpful to me in helping me gain functionality, but not so much in reducing pain. Anyways, there are Feldenkrais practitioners who can teach you Feldenkrais through group classes or private sessions - not sure how available it might be in your area - I went to some classes but what I found more helpful was ordering a CD that I could do it home and not have to drive anywhere (since driving hurts!). The CD I have is specific to arms and hands but I forget what it's called; I can try to find it (I'm sure it's somewhere around the house here) if you'd like to know more.

Good Luck Dabbo! You sound like such a sweet, funny young man
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Old 12-19-2006, 11:58 PM #3
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Thanks for the advice Nolina. I'll have to check around here to see if there are any of those Feldenkrais coaches. I'm convinced that I contribute to my pain levels by how I sit at work, how I drive, how I hold my daughter, etc etc. Its just tough to retrain your body! I too try and avoid driving whenever possible- its just not comfortable anymore. I do try and stay on top of the pain, and figured the best way was to "take ownership" of it. I'm also motivated by the fear that i'll somehow miss out on parts of my 4mo olds life because of my inability to do whatever. I try to stay upbeat, because i've noticed that the more stressed/depressed I get, the worse I hurt, and the more I notice my pain. However, there are definitely times - even at work - when I've been on the verge of (or just had) a mental meltdown. anyways.... I hope you're doing well and have low pain levels!
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Old 12-20-2006, 12:32 AM #4
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I would also recommnend the sharon butler book of stretches for TOS. I have been doing them, they seem to be the only thing helping me (though not all that much). Having little kids and babies is a killer because holding them is exactly what you aren't suposed to do. I have a 1 and 3 yo and a weekend home with them is in many ways worse than a day of work, although frankly none of it is any good anymore.

Sorry, I am feeling pretty pessimistic today. I think it is mostly the christmas rush. Haven't finished all that I wanted to and don't have enough energy to get to it now.

And I have mental meltdowns all the time.... from this and many other things, though mostly this these days. Some of that is one more aspect of the stress that all new parents feel. Anyhow, I am not trying to diminish anything- just to say you are in good company, if you can call me that : )

I am also seeing a hellerworker for the bosy work that goes along with the stretching. Hellerwork is similar to feldenkrais in that it is about realigning your body to put your shoulders back, open up your rib cage, adn reduce scar tissue and residual tightness in muscles all over your body. The basic course is 10 sessions long, but can be longer for those of us who have issues. But all sorts of people do hellerwork and rolfing and the alexander techniques as well as feldenkrais...they are all variations on the idea of better body mechanics. They may or may not solve your existing problems, but they should hopefully reduce future ones.

ah well, my arms are done. got to run,
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Old 12-21-2006, 08:58 PM #5
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Who do you use for hellerwork? Was thinking about tyring as well.

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Old 12-22-2006, 01:01 AM #6
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Robert Scherzinger. BCBS does not cover him a far as I know, he charges $85 a session as of Jan 1, but they are an hour and 15 minutes. About 15 minutes talking and 1 hour bodywork.

He has an office in Torrance on Lomita (by Torrance Memorial) the number is 310-326-8625. He is there T TH and Fri.

He also works M and W out of his home which is just a few miles off the 405 in Long Beach, I haven't been there yet- only his office. 562-427-8610

He is somewhere near 60 years old and has been doing this since the 70's, doesn't believe in traditional medicine, big on homeopathic remedies, really down on computers and big corporations. Definitely a character, but I really like him a LOT and he has great hands.

He is also very popular and is usually booked 4+ weeks ahead.

Give him a call, you won't be sorry!

Johanna
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