[Karen]

I have visited this forum several times over the past year or so, but never posted anything. I always found a lot of comfort in knowing that I am not alone!! And that I am not crazy!! I have had TOS for at least six years that I know of, but four years of that was without a proper diagnosis. It is all a big, long story full of doctors that didn't listen - I am sure everyone else has had the same experience - and ended up with one who didn't give up!! I have had brachial plexis surgery on both sides, radial nerve surgery on both forearms, and had 6 denervations in my back. I am done. No more surgery. The pain is still more that I can live with, and the weakness in my arms quite severe. I finally quit my job last February. Since then, I have felt somewhat better, but only because I have pretty much given up everything that I enjoy. I still have a LOT of bad days, but at least now I have SOME good ones. I still get depressed a lot, really wish I could work!! It is a real comfort to know that there are others out there that have the same problems!

[hairdresser]

Since then, I have felt somewhat better, but only because I have pretty much given up everything that I enjoy. I still have a LOT of bad days, but at least now I have SOME good ones. I still get depressed a lot, really wish I could work!! It is a real comfort to know that there are others out there that have the same problems![/QUOTE]

|Hello Karen it's not uncommon for us to feel this way after an injury. Thought this article might be of interest to you or anyone going through the grieving process. It's important for me to tell you that you are not alone. Take care.
http://www.madd.ca/english/services/after_injury.pdf
http://www.wpic.pitt.edu/research/depr/grief.htm
http://www.archrespite.org/archfs21.htm

[VixSparebitz]

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. You've given me SUCH and education, my brain hurts right now...LOL

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 leftside. 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 (probably hoped) 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 & mentally can’t take care of myself anymore in this state & yet, thanks to you's, I have found 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....I will now begin to build a strong support team. 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.)

[DiMarie]

Hi Vix, i was just catching up and saw your post. Say hello on the main forum page as sometimes it is months until I stop in the see what is up on this thread.

Nice to meet you but so sorry that you have this monster to try and lock in the closet.
There are several, well, more then three Canadians on here!
WElcome,
Dianne

[Sea Pines 50]

wow, vix, you are gorgeous! i am so sorry you are in so much pain. afraid i can relate only too well to your story but am so glad you've found us. and under tort law of course it makes NO difference, the fact that you have congenital C-ribs or a history of TOS insofar as any settlement or adjudication of your case goes re that car accident. so make no mistake about that.

i am sure some of your fellow canucks will be chiming in here soon enough and, hopefully one of them will know a good lawyer to steer you to with a good working knowledge AND a track record of winning TOS cases, becca. it's tough but it can be done. i'm just a stupid american and don't know the laws up there or the social services systems, etc. but gosh you're in a tough spot, it sounds like. so hopefully GIBBRN, JAMY, RACHAEL, MUCKER, HAIRDRESSER, and others will see your post up here on this thread and be able to advise you either on the attorney front or on the insurance or assistance front.

at the very least, one of us yanks (not me, i'm a near computer illiterate...) can at least copy your wonderful introduction post down to the main part of the forum where more members and lurkers alike will see it, vix. that way we can get you the help you need... and just as key - you have so much to offer here, with the life experience you have with the TOS monster... would that it were not so!!!

but i do have some information for you, which i gleaned off of the sorehand list (http://www.ucsf.edu/sorehand/), comprising responses to a fairly recent post from an ontario librarian suffering from an RSI who was desperately seeking medical tx. a woman named catherine fenech responded (catherine is the founder, apparently, of international RSI awareness day), as did a poster named peter ryley. i believe both of them live in the toronto area. at any rate, dr. heather tick is very highly recommended and apparently patients come from all over canada and even europe seeking tx with her. her website addy is: http://treatpain.ca/rsi_clinic.html and she is the director of the RSI clinic there in toronto. dr. chong was also mentioned, although it is thought that he is starting to restrict his practice almost exclusively to musicians at this time. he does intramuscular stimulation (a form of acupuncture) using lidocaine. dr. tick does it without lidocaine (dry needling) which according to dr. chan gunn is much more effective in getting the trigger points to release. peter came up with dr. gordon ko (http://www.musclepainrelief.ca/html/dr__gordon__ko.html) out of sunneybrook hospital, who also has an office in markham - but just be aware it can take a good 6 months to get an appointment with him.
{ try this link to get above info - http://www.musclepainrelief.ca/ }

if you sign up for the sorehand list (which is free) you will have access to its archives. sharon butler subscribes to that list and you will see her post every now and again; her website i believe is www.selfcare4rsi.com or something to that effect. or just google her name and she should pop up that way or you can use the search function on the TOS forum (upper righthand portion of your screen...).

now i do realize that your TOS was not caused by a repetitive strain injury, becca. mine was not, either. but don't let that put you off. the sx and the tx are the same. just as the surgical interventions are the same (but we ain't goin' there yet, right?) and good for you for going easy on the meds, too... but please don't be a hero. i just hate to think of you suffering unnecessarily. really wish you the best with finding a most excellent doc and PT -- STAT!!!

i have lived with a raging case of true neurological TOS since just a few years out of high school, which unfortunately was misdiagnosed for many, many years before i finally found competent docs and the right PT's and other types of practioners to start getting real help (i'm a few years older than you now). so i know what you're talking about with the out of control pain levels, the atrophy and the nerve damage, jax. this takes heart and it takes courage to get through. but the way i look at it, if TOS is progressive, then so are those things, right? they gotta be. i can tell how strong your spirit is.

ice (if you can tolerate it) and a sense of humor don't hurt either. if there is any way for you not to lose that internet access right now i think it's going to become extremely important. and i know you have a great deal to offer here too. we need you here.

stay close.

"a positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort." herm albright (1876 - 1944)



alison
"Be Brave"

[gibbrn]

I was supposed to be referred to him!!!! Just as I was leaving Ontario of course the recommendation came down for me to see him for botox treatment........wow Alison can't believe you have that site...link doesn't work by the way....
take care
love and hugs,
Victoria

[Sea Pines 50]

yeah, victoria - hey if i'm not mistaken that might even have been the one i emailed you about, thinking you might know of some people in ontario that could help the librarian in distress... but the sorehand folks ended up coming through for her in a major way i'd say!!!

i think the mistake i made originally in trying to put up dr. ko's link was, it somehow is trying to read the parenthesis at the very end as part of the addy. i didn't realize that at the time though, and knowing it wasn't working, i tried editing it to make the 'underlines' in the addy longer, which also didn't do the trick.

now it's too late to edit it. but if you recopy it with just a single underline in both spaces where that appears... being careful not to let it grab that last parenthetical - i think it might work.

ain't hindsight grand, victoria? mine is at least 20-20!!!

but i still think the lady doc got the most votes of confidence and if it were me, i would try her first... in a TOS heartbeat!!! plus which, her clinic looks to be pretty full-service - always a good thang. and no 6-month wait list. what TOS'er can sit around in pain for 6 months... oops i forgot whom i was talking to... sorry about that.

the problem with being on a CP'er wait list for a pain clinic like you, unfortunately, are up there in calgary my love, i believe is that we are among the strongest people on earth. we outlive our co-dependents by a longshot, as well as our docs, our PT's, and the rest of the lot of 'em. so ya truly DO have to wait. it's not like CP kills you (just some dayz maybe we wish it would...).

oh. i did NOT say that!

fortunately, no one reads this stuff up here! better still, victoria, i've a feeling you know what i meant (and you know me by know. i'm kinda sick that way!)

alison
"Be Brave"

[Mimi4]

Hi All~ I am guessing this is how I enter into the TOS forum?? I have been in pain since 9/2005 and continued working until 5/2006 not knowing what was wrong. 5/2006 went on med LOA and continued seeing docs at Kaiser for headaches, pain in shoulders, arms, elbows, wrist and hands, my ears started ringing and I have had a hearing loss (now 3), I have fullness in my head when I get up from a sitting position and sometimes from just turning my head. Kaiser did MRI's and found I have a bulging disc in C 5-6 some in 3-4, so they concentrated only on my neck gave me a few steroid blocks but ultimately couldn't find anything wrong with me for the symptoms I was posing to them. They all but thought I was nuts and offered all kinds of meds which didn't help. We dumped Kaiser in 12/06 and Jan. 07 went for my first visit to Kerlan-Jobe in L.A after 2 visits it was determined that my neck wasn't the issue and TOS was suspected. I had a Brachial Plex. MRI which confirmed the TOS. PT is too painful for me so I have stopped it. The docs won't give me meds, only sleeping pills as lying down on my sides is painful and both arms go numb and fuzzy... I most recently was referred to Dr. Ahn in L.A, he wants to do the rib resection surgery, I opted for bilateral scalene Botox injections (if I can get some info on them). I am presently getting acupunture and looking for someone that does medical massage. WC is a whole different issue, it was brought to my attention in Jan. of 07 that I should have been on WC since I went on LOA in 5/06, so I filled and boy did that open a can of worms! Of course I was denied and had to hire an attny. I am anticipating a QME in the near future, all the docs picked were orthopedics???? Shouldn't I be going to a Thoracic Specialist? Can I fight the attny on this?
I don't know what to expect anymore, my body is tired and in pain 24/7, I have no meds, not enough info to make a decision, and frustrated with the docs, WC and the attny!!! I can see why people throw in the towel.
On a brighter note I love this site and have aquired some great info and only wish I had found it sooner.
Any advise or info is greatly appreciated. Sorry I rambled on but nobody gets it except you guys. Thanks! Mimi

[Mimi4]

My attny suggested I apply for SSDI and I did and have been seeing their docs at my caseworkers request. I now it's short notice but tomorrow I have a "mental exam", yes, a mental exam????
Can anyone give me a heads up on that?
Thanks.

[VixSparebitz]

Glad you found your way here. As one of the newer ones too who just recently found this great group of people, let me greet you with a welcoming (carefully given, of course)

Wow, you've been through a lot in a short amount of time in comparison to my own story. And while there's so much that I'm just learning, I can't really offer much advice when it comes to the medical/legal/governmental fields (trust me, I struggle vastly with them all too....think most of us do for longer than anyone should have to). But I will offer one piece of advice that was given to me early on when I first posted to this thread for intro....

Copy/paste your posts over into the regular part of the forum (underneath where the sticky notes & links & this part are) with your own start of a thread....that way more of the great people that wander the TOS halls will have a chance to see it & get to know you & be of such support, it'll blow you away. It sure has me....they are all truly angels & so helpful, sincerely supportive & just better than friends/family because they all understand like no others can.

I wish you all the very best & again, welcome, Mimi