[343v343]

I am relatively new to thoracic outlet syndrome. And it's looking more and more like I indeed have it bilateral. Thus far my symptoms are primarily neurological and it seems as if I have ruled out vascular issues for now. My particular case, I am 33 years old and male and relatively active. I used to go to the gym a few times a week and am not overweight. I have no history of any traumatic incident such as a motor vehicle accident. I believe my issues are related to numerous years working in front of a computer, unfortunately.

I have been through the ringer to try and get some relief from symptoms, but thus far I have had progressively worsening symptoms. Luckily, my symptoms are at about a 2/10 or a 3/10 but my fear is that they will keep worsening.

I have read numerous articles about thoracic outlet syndrome and in some cases probably have read too much. I know the prognosis and outcome of surgery is not very good so I would like to avoid that if at all possible. My question is, for those that suffer on a long-term basis just how painful or debilitating your symptoms get. I realize everyone is different and that what may be relatively minor for one might be debilitating for another. I don't have the luxury of ending my career, I still have to work another 30+ years before I can even contemplate retirement so my challenge is to find a way to still make an income without getting myself into an even worse situation.

Obviously, working at a computer is going to be a real challenge. I imagine that is how I got myself into this mess, but it's not as if I can up and quit. I guess I'm trying to wrap my head around that if this is something that I have to deal with indefinitely, just how bad it will get.

For instance, I do try to sell myself on the idea that it is not fatal. And while that may seem like a crazy thought, I'm trying to gain some perspective on my issues and tell myself it is not the end of the world. At times I find myself very depressed and pessimistic that my life as I knew it is over. My question is for those that have suffered years and years… Honestly, how bad (REALLY) is your pain? What are your biggest challenges? How have you managed to still make a living or live a semi-normal life with this condition? How have your symptoms progressed or worsened on a long-term basis? Were you able to stave off some of the more serious complications and still managed to continue semi-normal activities?

[kellysf]

I don't intend this to bum you out, but it can get pretty darn bad. I worked as an attorney, played softball, liked to travel and take road trips, cook, play with my son, read without limitation. I was just an average 40 year old working mom.

I had the surgery and am worse as a result of it. Consequently, my life is very small, my pain is poorly managed and I can do very little. Even reading and writing in my journal is too much some days.

So, if you can't change your line of work, get an ergonomic evaluation. Make sure your work station is as good as it can be. Take frequent breaks to stretch and move around. Really try to listen to your body and don't do things that aggravate your symptoms. If you can manage your symptoms with rest, massage, PT, etc. you owe it to yourself to do so.

My situation has been absolutely life altering (and not in a good way). If you can nip it in the bud now, do it!

Good luck,
Kelly

[richard d]

You should post where your located as certain areas have well known doctors and p.t. with much experience with tos, without the benefit of working with someone with a vast amount of hands on experience in reference to possible surgery or physical therapy as well as programs specifically designed for tos sufferers your chances of a good outcome are dramatically reduced. This is a progressive affliction and it is difficult to explain to someone recently afflicted just how severe this can become.Most cases are vascular or neurogenic and depending on which one you have, although there is usually some degree of overlap, is a gigantic factor as well,with neurogenic being much more difficult to successfully treat. Good Luck.

[343v343]

Originally Posted by richard d

You should post where your located as certain areas have well known doctors and p.t. with much experience with tos.

I'm in orange county, ca. I hear you about it getting god awful. That is my biggest fear. How did your tos begin and what was the time table for it going from annoying to debilitating. *and yes I realize it's different for all. Just curious.

[kellysf]

Not sure if you were asking me, but I'll answer anyway.

I began having symptoms in May 2002. I had PT and biofeedback before I was diagnosed in January 2003. I stopped working in February 2003 for what I thought would be a two-month rest period to focus on getting well. I tried every manner of conservative treatment to no avail. I had surgery in January 2005 with James Avery in San Francisco.

I've seen lots of TOS specialists. On the whole, I've had good care -- it just didn't work.

I have bilateral neurogenic TOS with some vascular involvement.

[343v343]

I had the surgery and am worse as a result of it. Consequently, my life is very small, my pain is poorly managed and I can do very little. Even reading and writing in my journal is too much some days.

Why do you think your surgery failed ? Scar tissue? Neurogenic or? What got worse?

[Sheri_TOS]

Hi! I have to chime in as I have had surgery for neurogenic TOS on my right side. I had surgery back in 2004 and have been symptom free for many years. The muscles had severely atrophied by the time I opted for surgery as a last resort.

The TOS on my right side was triggered by a car accident. I was lucky enough to being seen by doctors who support TOS and once they immediately suspected TOS (10 mos post MVA), the positive dx came three weeks later with a positive EMG/NCV. I look back on this period as "hell". I couldn't hold a pen to write something, I couldn't cut meat, I couldn't shake hands with clients without triggering an immediate flare. And the pain/muscle spasms were horrible.

It is imperative to be seen by someone who is knowledgeable on TOS. Since 2004, I've had the unlucky opportunity to see neurologists, neuro surgeons, physiatrists and ortho doctors for various other issues and it was hit and miss whether they believed in TOS. I'd say the orthos were the most open to TOS.

Earlier this year, I developed the typical ulnar/TOS symptoms on the other side and first saw the doctors connected with my PCP's practice. They did not support TOS and were trying to say my problems were from the neck and that C5/C6 was somehow causing ulnar symptoms??. I stayed compliant and followed their advice. After one failed spine injection, I ran back to my old physiatist who dx TOS the first time around. He evaluated and felt it was TOS. He offered to do a scalene block right then and I jumped at it to get some pain relief.

This time, TOS is likely being caused from my work environment and the fact that this arm is my dominant arm. Due to the economy, I can't quit my job or reduce my hours as I am the sole support for the family. And I have 25+ years to retirement, too. I wonder about the future and whether I'm doing enough now to prevent the worsening of the symptoms.

From my perspective of being a former TOS surgical patient and unfortunately dealing with it again, find doctors and physical therapists who are knowledgable on the subject and support TOS. As Kelly suggested, get your workstation evaluated for ergonomics. You need to take the steps now to prevent the situation from getting worse. My physiatrist felt if it is caught early enough, you take the steps to help the situation and you learn to manage the symptoms, you can prevent the TOS symptoms from getting worse. I'm hoping I can do this given my prior experience with TOS.

[343v343]

Feeling a little discouraged. Like my life is over but I can't predict when. Seems like surgery is a bad idea but unless I more or less quit my job I am relegated to a lifetime of pain. Not even being able to write in a journal is no way to live. I hope that is the exception as the literature seems so much more favorable. Hard to know what to believe.

[Anne4tos]

Not to bum you out too, but TOS is insidious if not caught early and proper therapy is received. What is proper therapy? There is none. There is no protocol for this condition as we are all different. What works for some, doesn't work for others and vice versa.

I'm at my 4 year mark with this beast and 2 1/2 years since dx. My life use to be smaller, but it's growing due to manual therapy which I was told to avoid by numerous TOS experts. I'm bilateral neurogenic with compression only in hyper-abducted positions. Compression of your arteries and veins doing the Adson, Roos or other positions does not mean you have arterial or venous TOS.

I have the luxury of not working and have been declared 100% disabled. I can not longer do most of my hobbies and have had to hire people to garden, clean and misc. Working to get better has been a full-time job for me and I spend upwards of 20-25 hours per week doing therapeutic exercises at home. I also receive manual therapy.

Pain scale? The longer you spend in chronic pain your measurement on the pain scale vastly differs. What I use to consider a 7 is now a 3. With medication and me managing TOS rather than other way around, I can usually keep pain in my new 3 range. Giving birth to 2 children without even a Tylenol was easier than some days with TOS.

I've elected not to have surgery as I know to many people like Kelly. I use to think TOS forums were only filled with people who weren't "cured." Sadly, I've seen upwards of 75+ people come to forums with the idea that surgery will cure them and they all returned worse or no better, many with new symptoms like RSD. I've only seen one success story and it was a purely venous TOS case.

On a positive note, you caught your problem early. You need to have an ergonomic analysis of your work station quickly to avoid further harm. Never give up hope, humor and even though it may not be fatal, you will still be fighting for your life.

[Anne4tos]

P.S.

Your life is NOT over. Find good care in the way of PT and other therapies and you can be one your way to 100% success. Never, ever give up hope.