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

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Old 08-06-2007, 03:51 PM #1
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Default reGreeting & introduction

(copy/pasting my intro as suggested by some other caring members....thank you's for the early welcomes....can't begin to tell you's how familial y'all have made me feel already, THANK YOU)

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Greetings fellow TOSers

Vixen here from Hamilton, Ontario. Finding this forum & such a wonderfully supportive network of people with the same things is nothing short of miraculous for me…..thank you for having me.

Have spent quite a few days, literally, scouring through the 39 pages of the forum & my brain feels SO overloaded, yet I’m relieved to find kindred minds, so much education & help as to what I really need to get a grip on living life with TOS.

Not sure where to start to tell you about me. I’m one of the rarer birds in that I’ve known about & dealt with having cervical ribs for 37 years (we discovered them & their probs back when I was only 13 and just becoming a budding teenager). They are bilateral with the left side being larger & more symptomatic.

Back in the 80s my symptoms progressed to the point where they did a rib removal in Alberta. For many years I naively thought they’d removed the errant spare rib on the left
side. Only found out last year that it was actually a rib resection of my first rib & not the culprit at all.

In January ’03 I was in a rear ender accident & they started treating me for whiplash. Treatment went fairly well with physio/chiro for the near 4 months that the insurance company approved the treatment plans. But since then I’ve fought to try to get the insurance people & the medical field to realize there was more going on here than just that.

My family doctor (who I only met when I went to ER after the accident) took me on, as finding a physician in Ontario is no easy feat, sadly. So I was glad to finally have someone regular to tend to my medical needs. At the time, it didn’t occur to me that any of this “rib stuff” would be rearing it’s ugly head again. I also didn’t think to question this new doctor about his doctoring theories. Turns out we didn’t see eye to eye on many things regarding my treatment. …..chiro & pain management being the two major issues why I quit seeing him over a year ago & quit taking the few meds he’d prescribed, as the depression meds just made me emotionless. I truly think this man thought I was just crazy & making so much of all this up, as he didn’t understand it hardly at all, so surely I was some paranoid hypochondriac or something. He hated doing all the insurance/legal paperwork that was becoming evident with the lawsuit & asked me to stop having my lawyer send anything to him.

I had before quitting this Dr, gotten him to refer for some neuro tests, which proved I did have something there, which then got me a referral to a vascular surgeon whom I saw last year a couple times. Of course all this guy wants to do is cut, he is a surgeon afterall, and tells me the only future I have is to remove the left cervical rib…I’m not convinced.

Now I’ve known the value of treatments like physio/chiro/acupuncture from treatments I’ve had over the years. I knew that my pain management needed to be dealt with, my physical condition could be helped with other methods, even if they were only a bandaid solution (as he called it) ….but I wasn’t ready to agree to surgery quite yet, when there were other avenues.

Back 37 years ago, when I was only 13 they wanted to operate & only gave me 50/50 odds of coming out paralyzed to some degree. Now in the new millennium, surgeons have progressed to him giving me odds of like 17% these days. Well, the fact is, I just turned 50 & wasn’t about to willfully succumb to going under the knife while I still enjoy some use of this arm. And I know what things I need to keep in optimum shape to deal with it all. I just can’t get the doctors/lawyers/insurance people to admit that this is all very real & I may just have an idea of what’s going with my body & what it needs. I have lived with it for a lifetime afterall. I just need them to let me get the treatments & have a life, as limited as that may be.

Been off the meds for16 months…..have had NO financial support since the end of ’05. I’ve now atrophied/progressed negatively to such a degree with the chronic pain that I’ve become very depressed/near agoraphobic. I’m sure the insurance company thought I’d just crawl in a corner & die/go away, but now that my savings have been exhausted, my mental state’s deteriorated terribly with this chronic pain & non treatments of any kind, I’m facing losing my business, my loft & everything I have. Social Services isn’t any help as I’ve not been “labeled” as disabled. I physically can’t take care of myself anymore & I have to find the strength & clarity to grasp my last will to fight all this. I may be in the biggest flare of my life, but I’m still kicking.

I have been the victim here in so many ways. My early years in suffering from TOS has kept me very naïve but now as I approach about as low as I ever thought a person could get, I found you angels. <biggest group huggle imaginable> I can’t thank you’s enough.

You’ve equipped me with knowledge & the willpower to fight for a better life. I wanted to introduce myself quickly while I still have a net/phone connection. But mostly I wanted to thank you’s for the empowering me with what I need to save myself. I may be offline for a while, but dangit, I’ll be back…..you’ll probably get sick of me.

I’d love to hear from a few of the Canadian girls with any advice they may have on how to best crawl out of this hole. I need to know about good therapists, pain doctors/clinics, government programs that surely must be out there for someone such as I suffering with all this. Please feel free to email me, as no matter where I end up, I’ll be checking my emails from time to time, even from the library if that’s what it takes.

Again, my sincerest, most grateful THANKS!!!!!!!!!!!
(and I’ve really rambled on, sorry)



Vix (real name’s Becca, but most people do call me Vix in real life.)
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Old 08-06-2007, 04:20 PM #2
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Unhappy sorry you have TOS.

Welcome home Vix!

Your ribs were much like mine: bi-lateral, with right longer than left. Fused into the first rib via fiberous bands. also had an extra scalene on the left. I can well imagine the pain you are in.

I'm sure the Canadianne's will be along soon to assist you with sorting out this terrible situation. Can you access the internet from a library or other public (free) source? I've found the support here has made the difference for me between a hard road and total disaster.

*snif* I love you guys!
Anne
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Old 08-06-2007, 05:57 PM #3
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Default loving the support

Anne: I really appreciate the welcome & support, as I'm sure most new people do to this forum. Since I've lived with this all for so long, and given how naive the healthcare providers have been themselves way back then, I've pretty much "grown up" thinking that I was just more a freak of nature. This pegging & outlook from others meant that I never really did a lot of own personal education on the whole thing.....but that's all changed BIG time now, thanks to y'all.

Can you access the internet from a library or other public (free) source? I've found the support here has made the difference for me between a hard road and total disaster.

Yes, I'd already had the library access as my backup plan with this innevitable cutoff of my communication line <barring having the winning lottery ticket before that becomes a reality...lol>
But while I've still got it, I'm forcing myself to sit longer doing research with all your help & experiences as my guide, while the getting's good. Already my outlook has gone from the doom/gloom of total disasterish to a road I can still walk & win on, specially with the support that abounds withing this forum & it's amazing membership.

this place gives me much hope for my future at last & for that there will never be enough hugs & thanks


Vix
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Old 08-06-2007, 06:58 PM #4
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Hey Vix!!! Dorrie here from Keswick, Ontario!!! About 1 1/2 hours away from you!!!!!!!
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Old 08-06-2007, 07:26 PM #5
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Hi Vix!
Glad you made it.
If you look for the linl I have up for old archive post, there are about 500 pages there. SOme are dead ends but for somereason many can still be read, but not respond to them...
I will try to find some of articles we rely on and and I thinl Jo has up in the stickey favorite sites too...
Di
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Old 08-06-2007, 07:32 PM #6
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Hi Vix! Everyone is here to help. Sorry you have to be here but you found a great place to be. Linda
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Old 08-06-2007, 08:03 PM #7
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Hello Vix, and welcome. I'm a fellow Canadian. I hope some good luck come's your way. I'm having a few issue's with medication, and a bit under the weather but I wanted to say Hi and again welcome.

Vix; Do you have a Family Doctor? Have you applied for Cppdisabilty yet? Do you have after hours clininc's in Ontario?

Here is a link to cppdisability. It will tell you how to apply for benefits.
Service Canada
http://www.hrsdc.gc.ca/en/isp/cpp/disaben.shtml

In the meantime I would suggest social services

http://www.cfcs.gov.on.ca/mcss/engli...l&program=mcss

Last edited by hairdresser; 08-06-2007 at 08:20 PM. Reason: adding links
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