[David K.]

Hello Everyone,
A little bit of what I've gone through......I noticed numbness in my hands and arms way back in 1999. Me being a construction man (drywall) went to the doctor "Kaiser" they did a EMG and said it was in the good. I went back 6 months later with the same even worse and more often numbness they said the same, you must of fallen asleep on your arm. Ok 2001 my right index finger froze in the bent position, this was caused by Pronator Syndrome ........5-31-2001
that was the last day of work and yes I'm still off. I got the best Attorney in the area Mr. Boxer in Oakland his office the best Workmans comp butt kickers in the area. I had my P. S. operated on and fixed. Then the doctors started to take notice to my numdness mostly from the therapy'st notes. I had both shoulders repaired By Dr. Halbrecht in the city. My arms still going numb....
He sends me to Dr. Avery magic he is a Thoracic Outlet Syndrome Specialist and within a few minutes he said bi-lateral rib reduction and scalene muscle removal....5/2005 left side....5/2006 the right. Dr. Avery did a great job I
feel great I'm still working on strength and breathing. Workmans comp has fought me the hole way. It looks like very soon I will be released for work. That was a fast version of the 6 years for me.

[horsemommy]

Hello all,
I've recently been diagnosed with TOS (officially) although I've told the docs for 3 years that I have it,LOL. But hey, what do WE know about it????? ALMOST EVERYTHING!
I own a horse farm in NJ and live with my husband and 2 grown daughters. My hubby is in the Air Force and flies Kc-10 refueler & both my girls are in college. I work for vascular surgeons besides on our farm. I give lessons and still ride competitively. Fortunately riding doesn't require much hand/arm strength just alot of leg pressure, balance and good posture. So riding is actually therapy for me . What is good for my TOS is all the cleaning involved in owning a farm!
I was injured in an auto accident 10 years ago and have been getting steadily worse over the years. But what push me over the top was 3 years ago I was bringing my 1000 lb, gangly 18mo draft horse in from a snowstorm and my dog tripped me. Well, when I fell, I knocked skippy's feet out from under him and he pancaked me onto the cement floor. I was lucky he didn't kill me! I walked away with a couple cracked ribs, costochronditis and a major concussion. Only to discover the costochrondritis was masking alot of the TOS symptoms. Once the costochronditis calmed down, the TOS was very apparent. That's what started my long quest to proper diagnosis. I've done chiro, pt, massage, you name it. Meds are what get me thru the day now.
~Now here's a funny twist to the whole thing. My DAD had TOS from an auto accident 30 years ago and had surgery to correct it 28 years ago! same arm, same exact problem! THAT'S how I knew what it was. Personal experience.
(Just convincing the docs to listen to me!) My dad had surgery and hasn't had a problem since, so I'm hoping for the same!
Thanks for "listening" and having a great support forum.
Mary Lou

[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.)

[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

[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

[thunder92]

Hello all! I am so glad I found this site after a year of no one knowing what was wrong with me. Seems like a great community. I know most of you probably have stories like mine

I started having symptoms 1 year ago. My chest muscle would spasm. It didn't hurt. Then my arms starting numbing and being in pain. Then my chest hurt and felt like a bone was out of place. Muscles spasming from place to place. I would wake up at night shaking for 10minutes. I assume a nerve was to blame. They thought it might be my heart but it was not.

That has passed but I still have terrible pain and numbness from time to time. My muscles going into my neck feel so tight and pop. I hate the numbness too and i think it is responsible for my stomach swelling too. I get dizzy and cold feeling in my head at times and forget trying to install a stinkin light or do anything above my head! My shoulders will kill me. My chest is sore to touch and the nerve on my underarm hurts like heck at times too. PT and chiro finally helped relieve constant pain.

The wierd thing is that muscle relaxers and hot baths help the most. Why is this TOS'ers?


Ok, thats my problem. Glad to meet you all!

[gibbrn]

Hi and Welcome!!

We all do have our stories some longer than others.....you are in the right place! Hope we can help....I suggest starting a thread on the main board to introduce yourself and get help if you need it.....

I too find a lot of relief from heat and muscle relaxants....hence my thought thtat my tight muscles from an injury I got at work lifting a patient up from a toilet (nurse) and hell from then on.

Are you getting the right medical care?? Vascular inquiries to see if it is vascular??? Neurological issues....need neurologist??? Just thoughts...post a thread and we can get on top of some issues
glad to have you and welcome to a great community. We are multitalented and have a vast range of knowlage....so post away and feel welcome...oh and no dumb questions!!!!!!!

love and hugs,
Victoria rn