[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

[comfortamI]

Hello all, my first day on and just want to say after fighting with doctors and lawyers re TOS or not I finally after 9 years received approval for treatment (after 2 Rotator Cuff Surgeries and entire spine treatments over the years due to a workman's comp. problem) Just want all to know that I was recommended by Kerlan-Jobe Orthopedic Group and Dr. Vernon Williams to be exact to see Dr. Jordan. I was not too anxious for the first treatment for injection in scalene muscles ? After so many years of fighting workman's comp and firing attorneys that would not listen, I WAS amazed how much better I felt. I REALLY did not want to have Botox injections (if so being in So. CA. I would have considered my face if not in soooo much pain) Dr. Williams finally convinced me and after fighting Workman's Comp throught the Courts, I received approval.

I must tell you that Dr. Sheldon Jordan is fantastic and that was "before I checked him out on the internet." I was unable to sleep laying down for many years due to TOS in both sides and left dominant and being left sided. For so many years I HAD to sleep sitting up and still in extreme pain with other body parts and with help of Lioderm patches (thank goodness they are available!!!!) Its been 2 months and of course I still have pain but with activity from a 8-9 its 4-6 and I feel that is fantastic and able to sleep again lying vertical.

Any questions please contact me, comfortamI because I am constantly looking for a better way to exist and live and be happy. (Even though I have constant pressure and refussal from Workman's Comp)

[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?

[bigpede]

Hi, Im new at this. my name is pete. I had rib ressection on right side two weeks ago. Phrenic nerve was [damaged] now i have paralyzed elevated diaphram on right side. Anyone else have similar[complications]?

[beckyb810]

I'm Becky...I used to post a long time ago on the BT forum, but hadn't been on here in a while and discovered yesterday that it doesn't exist anymore. Anyways - my story (the short version) is that I got a blood clot in my left shoulder, spent a week in ICU while they broke it up, only to have it re-form within two weeks. Several painful months and several clueless specialists later, I ended up with the wonderful Dr. Julie Freischlag at Johns Hopkins, who officially diagnosed me with TOS (both neurogenic and venous), and did a first rib-resection and scalenectomy. I went through 3 months of rehab following the surgery. I am now 3 years post-op, and have no problems or symptoms to report. I wanted to share my story since I know that most people who have been successfully treated don't end up posting on forums like this.

[LA31]

Hi, as many of you know, I am Annie. My long but hopefully successful story is that I was diagnosed with whiplash after two car accidents in 99 and 2000. I had episodic back and neck pain on my upper right side, neck,, shoulder, and ribs, for the next eight years. Usually, the pain was not bad enough to prevent me from working, but it did get very severe at times.

In October 2006, I turned my head to the left quickly when the phone rang in the morning and woke me up, and I felt a sharp pain where my right side of my neck meets my shoulder. Ever since then, I have been debilitated and running from doctor to doctor. Got every test that you could possibly imagine. Finally, in January was diagnosed with TOS. Tried physical therapy, shots, acupuncture, and pretty much everything else you can imagine. Have been unable to work, drive, and was pretty much bed-riddden since December.

Finally decided to get surgery with Dr. Sanders in Denver three weeks ago. During surgery, Dr. S. found a 1 cm long extra cervical rib that was pressing against my C7 nerve root in my spine. No doctor had seen this extra rib in any of my tests. However, I did have three abnormal EMGs showing abnormalities in connection with the C7 nerve. Dr. Sanders removed that extra rib and also performed a scalenectomy and a pec minor tetonomy.

It was and continues to be a hard recovery but I am doing so much better. I cannot tell you how happy I am. I will continue to post on this site in the hopes that my story will give others hope and also that they can learn things from my case to help their medical case.

This site and the wonderful people on it helped me get through the really hard times and gave me some incredibly helpful information.

As always, feel free to PM me if you'd like to discuss my case. I hope this information can help others.

All my love, Annie

[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!

[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