[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

[mtnmom]

I'm new here and pretty new to this whole TOS thing as well. I was diagnosed with venous TOS (effort thrombosis) almost 5 months ago - since then I have been hospitalized, undergone more medical tests, treatments and procedures than I care to even mention and had one rib resection surgery. Funny how life works, one day I feel fine the next I'm laying in ICU. The good news is, I'm fine once again.

Sorry to see so many of you going through this. Although, many of our situations are different, I'm here to offer support and encouragement to anyone who needs it!

[johannakat]

welcome Mtnmom glad to have you among us...and hopefully your surgery helped you?

[michelle C]

HI there!
Wow, I am glad to find this site. I have gotton to the point where I really need to talk/hear what other's have to say. I kept thinking that if I joined a chat board, I would end up obsessing or negative, but here I am and I am happy.
I am 33yrs old. I have TOS, had rib resection in Apr 06 after 2 mva's, May/Nov 2004. They took the 2 branches of scalenes on left side also. Not much into typing tonight as the whole reason I was searching was b/c I am sore from foldig half a load of laundry and utterly frustrated. I was happy to see that I am not the only one who cannot do so many things. One girl posted she cant shop or do anything with arms, that is me, everything triggers it and I am dealing with people that dont understand it.
So, here I am and thank you for a great site, I will definatly pass it on to my clients who suffer pain also as I teach pilates rehab.
MAny thanks,
Michelle---did I post in the right spot?? LOL, sorry, new at this

[gibbrn]

Hi Michelle,

Welcome and yes you are in the right spot. When you are able try to post a new thread in the other part of the forum and we can see about docs....therapy and any other issues you have let it out we are here to help and we are here to make sure you DO let it out we are great at listening...we have no choice....we all read but may not post.....some are more functioning than others, but all know the hell of TOS!!!

Welcome to our happy family......sorry you are part of it...but we all somehow manage to continue......

love and hugs,
Victoria

[Jomar]

the link to michelle's copy of this on the main TOS forum -
http://neurotalk.psychcentral.com/sh...ad.php?t=31048

[holhar]

Hi. I've been lurking a while and decided to join. My son was diagnosed with venous TOS about a month ago. Since we are close to Hopkins, I talked to Dr. Freischlag's office and they got my son in immediately. He is only 10 and her youngest ever patient. Dr. Freischlag said my son needs surgery. I was just wonderinghow other people made out with first rib resection and/or Dr. Freischlag. It's been comforting to know that we are not alone out here.
Hope to hear from you soon.

[ihtos]

I've heard good things about Dr Julie Freishlag. Good Luck to you and your son!

[Dena]

Hello All

I am very new here, and to TOS as well. I am not yet diagnosed. I would like to tell my story, because I am scared and feeling very alone right now. IF you'd like to read it, I welcome comments, opinions, suggestions and your experience.

Here goes...

Years ago I was a high school cheerleader and pom-pom girl...this was 1990 so picture big bangs, frosted lipstick and jelly bracelets.

I was performing a routine to the classic tune of "Can't Touch This" by MC Hammer when one of my bitchin' moves knocks my arm out of socket. That is the kind of injury that you can't help from just poppin it right back in. I kept cheering cuz we were winning, I was co-captain after all.

Fast forward to the turning of a new millenium. The whole family gets in a 45mph car accident....our Tahoe versus the 1997 Nissan Sentra. I had moderate neck and shoulder pain for 10 days after that.

Between 2000 and 2007, I had what I call "episodes" of shoulder and neck pain. Sometimes, I'd sleep wrong and my hand and/or arm would be numb upon waking. These episodes typically lasted a week to ten days, with moderate pain until I went to the Chiropractor. His adjustments helped tons. So much so, that I never went to him for his recommended follow-ups. I only took the time to go to him when the pain got bad. He consistantly suggested that I make weekly (or more) visits to correct the issue with my neck and posture.

Now comes the divorce. My husband of 12 years leaves, all kinds of bad things happen to my family; financially, emotionally and otherwise. Before the demise of my marriage I was self-employed, able to contribute to the finances of our upper middle class suburban home in various sales jobs and MLM success.

After he left, not only was I depressed, but my three children and I were completely destitute. In a matter of 6 months, we lost the house, the car, and our dignity.

After trying car sales and making no money (can anyone say recession?), just over two months ago I took a job as a waitress working third shift (9pm to 7am) at a diner style restaurant called Steak-n-Shake. That's when things went from bad to great to worse.

The "great" was that I loved the job. I loved interacting with people, helping them and being a good waitress. I took pride in my work, cleaning and stocking and waiting on people, repetitive motions on that shoulder and neck. I made pretty DAMN good money too. Not rich-type money, but a decent take home to survive. Then the numbness started.

The "worse" was that after about a week of serving glass after glass of tea, cokes, coffee, shakes, chili, burgers, etc...I started to frequently awake with the fingers in my left hand tingling painfully and "asleep". I figured I was sleeping on my bad left shoulder and tried to ignore it. Another month into it, I was taking as many hours as I could, working 10 days in a row frequently. The money was needed and earned doing something I loved, but the numbness was creeping up my left arm, and sometimes woke me in the night.

Now, for the past five days...I wake up, and my whole left arm is numb, except for the burning pain in my inside forearm. From time to time, the right hand has numb fingers as well, but never as bad as my left.

So I Google "numb fingers pain" and wind up on some forum (don't remember which) where a poster suggests TOS to an inquiring mind. I look it up, and read the smptoms, my jaw dropping. The poster was supposedly a doctor at one of those "ask a doctor" sites and he recommends that I list my symptoms to ensure a proper diagnosis. So I have. I've listed them below because I want to know if my symptoms are similar to what you all feel...and how on earth we are supposed to deal with the pain (exercise? I really hate exercising). Again, your comments are welcome.

• Extreme Pain and severe numbness in L arm when laying down
• Whole arm aches with activity (like typing, serving, etc)
• Left shoulder frequently cracks
• Left shoulder markedly lower than right one
• Consistant pain localizes more intensly at the wrist, elbow, shoulders and finger joints (in that order)
• Entire hand, wrist and arm ache and are numb up to the elbow. SEVERE pain in the inner forearm, makes me cry sometimes
• Mild to moderate upper back/lower neck pain
• Weakness and shaking when handling even very light items
• Continual swollen feeling to the left fingers
• Compensating by slouching and over using right arm/hand

What I have tried (five days into the extreme pain):

• Heating Pad (helps)
• Posture (don't know if it helps yet)
• Muscle Rub (feels good, very short term)
• sleeping sitting upright
• trying to stand and sit with a better posture

800mg Ibuprofen (barely touches it)

MRI Results:

• C Spine: No Nerve Impingment
• Shoulder: Tendonitis (Supraspinatus Tendon)

Thanks for reading. Glad to meet all of you,

Dena