[gibbrn]

I hear your pain and frustration as well as your fear.

I too have had the surgery and am in canada...ontario....so I hope we can help to answer your questions. If you post a thread with your questions you will likely get a better response than just posting here...I will move your post so others will answer and give advice I hope you don't mind me doing this...

take care...here always for help just private message or email me with questions or concerns we are a great bunch of people and we all love to share in each others troubles so welcome again and lets see what we can do to help to get rid of your fear!!!!

Love and hugs,
Victoria....gibbrn

[Starla78]

Just thought I would say Hi and re-introduce myself. My name is Shannon and I use to post under the user name Chlobugsmom. I was living in So CA and am now in Boise, ID.

TOS is still raging only difference is that I can't find a doc out here to save my life....Mine is due to many hours of work (hairstylist) with no breaks. I am a surgical canidate but have refused up to this point. I think that's about it.

Hope everyone is doing as well as can be expecting.

Smiles, Shan~

[lisagenee']

My name is Lisa, I'm 23 and have bilateral tos. I had BL scalenectomy and left side first rib resection a year and half ago, and am going to have my pec minors removed in a couple weeks. I live in PA but have to fly to Denver..maybe i'll get snowed in!!! Looking foward to meeting you all...Take care!


----
"The world need dreamers and the world needs doers. But above all, the world needs dreamers who do."
--Sarah Ban Breathnach

[gibbrn]

Hi Lisa,

Welcome to the forum. I hope that you get the information you need here there are a great bunch of people here and I hope you'll find we are all very friendly..... any info we can give to help you will gladly give it ........any support you need for here for you...... we understand what nobody else truly does in your life!!
So Welcome and please feel free to post anywhere and lookup information!

Love and hugs,

Victoria

[lisagenee']

Hey Victoria,

i was born in Ft. St. John, BC, but moved to the states when i was young. Good to know a fellow canuck tho!!! Yes, its really nice to meet so many other tosers, its easy to feel like the only weirdo on the planet!!! Seems like an uber-supportive spot.
Later gator,
Lisa

[tlsanders]

After 7+ years of chronic, often acute and debilitating, pain I was told I had TOS and what it was and I sat down and cried. I was at a hand surgeon because I was supposed to have carpal tunnel surgery after years of wearing braces with no relief. The surgeon told me I didn't need surgery the carpal tunnel wasn't that bad and then he proceeded to move my arms around and check my pulse and stuff and finally I am on the road to being flare free. Until February 2007 I had never heard of TOS and I finally convinced my general practitioner to trust me and refer me to PT and a physiatrist. Now to find out there is an entire community of people who don't think I'm crazy I think I would like to sit down and cry again.

[Tempus]

Hello all. I've been unknowingly suffering TOS symtoms for many years. I've made many attempts with different docs to find out what was causing the pain in my left armpit and down my left arm over the years with frequent fears of heart problems or arterial damage. I had an episode a few days ago that I thought may be a heart attack as my left armpit and arm suddenly became excruciatingly painful. I could feel every beat of my heart throbbing yet I could breathe ok. I've had a lot of pain in my life and this was right up there with a smashed sciatic nerve and shattered disks. A trip to the emergency room followed by a night in the cardiac ward left me with an ecstatic group of doctors (apparently a proven diagnosis of TOS is rare) and a whole new page of worries. I'm glad my wife found this place for me as I've already taken solace in the words of many of you. I'm sure I'll get around to posting my questions soon but if you all don't mind, for now I'll lurk a bit.

Thanks for being here.
B

[MelissaLH]

Do you think only one year of trying physical therapy is sufficient to demonstrate the need for TOS surgery?

In the summer of 2005 I was rear-ended and sustained a whiplash/hyperextension injury. I just had a lot of neck and shoulder pain for about three months, and then for the next year I had periodic problems with my neck muscles locking up any time I would overextend myself such as with exercise or just trying on too many shirts at a clothing store!

I was diagnosed with thoracic outlet syndrome in the spring of 2006 when I suddenly developed what was thought to be wrist tendinitis bilaterally. Treating the wrists alone didn't help, and strengthening my upper body only made my arm and hand pain worse. By resting my now spindly upper body, I have managed to get my hand pain under control, though any time I try to build upper body strength I'm spiraled right back into severe pain. I do see a physical therapist for myofascial release and craniosacral work, which helps somewhat, but doesn't help me strength-wise. I haven't been able to type full force for a year, though I do have to type a bit when my speech recognition software doesn't work properly (I have to Dragon NaturallySpeaking version 8). I can't drive, or grasp for long periods of time. I have finally been able to do the dishes for the last couple months, and I'm just proud of that! My hands hurt every day regardless, and a lot depends on which way my head is pointing or leaning.

I went to see a thoracic outlet specialist last week and he diagnosed me with arterial and veinous TOS of my left arm and arterial in the right, both of which meaning that I do have a nerve compression which seems to be my main complaint. He suggested having my first ribs remove as well as a scalene muscle severed on both sides. I'm really afraid of the surgery because of the recovery time, it seems from a lot of people's posts that it takes a LONG time and I have to get back to college. Any advice? I might post my questions elsewhere, just in case this doesn't get read. Thank you!

[hckypck94]

I haven't been officially diagnosed with TOS yet, but my GP is leaning that way. I've had a cervical X-ray and MRI that has come back normal, EMG test on my arms that showed no peripherial nerve damage and now I'm being sent for a MRI on my entire chest and shoulders. I have pain in my neck and shoulders. Left side is worse than the right. Hand whitening and reduce radial pulse on my left arm, when stuck straight out to the side. My biggest complaint is the pain in my chest, especially behind the pectoral muscle where it goes up toward the shoulder. Does anybody else have terrible chest pain with their TOS? Thanks for the help.

[minnnimee]

I have what I believe is TOS. I am so glad I found this web site, but scared from all the things I have read. I kinda figured open me up, stich me back together and I am good. It doesn't sound like surgery is the cure all though

A quick history. I have had a tightness on the left side of my neck for a few years, making it difficult to hold the phone ear/shoulder. Also couldn't crack neck to relieve pressure on the left side.
Didn't pay much attention to it, just compensated.

At Christmas time, I was putting a heavy tray of lasagna into the oven. When I stood back up and took a step, I got this sharp pain on my right side- sort of in the middle of my body but near the inner rib area. It felt like labor contractions and took my breath away. The pain would make me groan gutteral, like childbirth. Each step I took to get to the couch resulted in this very same pain. Once sitting, it continued with even a minor movement, for maybe about an hour.

Then it just stopped. It was gone. Weird, I thought. But over the next couple of days I started to get a pain near what I would have thought was my kidney- lower rib cage right side to the back, brother said- kidney stones, from the moment it happened. Pain seemed to confirm it. After a couple of days, with the pain getting more obvious, I went to the E.R.

They did a CT Scan, said no kidney stones, muscle sprain.
I didn't buy it, but whatever.

Next day, Hospital calls- saw mass on kidney- get to primary dr. -asap.

Go to primary dr., sets up mri and blood tests. Then proceeds to go out of country for a month leaving me wondering if I have cancer.

Finally get report back, kidney is normal. Does show degenerative bone something..

Dr. says I dont know where to send you. Gives referral to gastro, and urologist. I know neither is what I need.

Pain getting increasingly worse. Back pulling and burning when I walk. Goes from shoulder blade to shoulder blade across and down. Have to take constant sit downs to alleviate pain. Can't hold pocketbook or anything else with weight while walking.

Can't walk for more than a couple of minutes- Pain goes from zero to 10 quickly. Can't shop for groceries- impossible.

Can't stand to do household chores for more than 2-3 minutes. Cooking etc..all next to non existent.

Work at desk in office, so I am good for coming in and staying put.

I think left shoulder had started to give me pain before the incident- I remember thinking I strained it by trying to open a locked window at the office ( thinking it was unlocked )

Now, arms go numb when trying to sleep at night, or when holding phone to ear. Left side especially.

Can't get a good nights sleep. Teen daughter is assisting in day to day things- sometimes even need help unhooking the bra.


I am thinking something snapped that day over the oven, and has gotten progressively more painful.
Thoughts anyone?