How did you get TOS?
 

I thought I do a poll on how we got our TOS and if RSD also.

I went with the first. I'm not exactly sure what other factors would be considered.
Basically I was moving several thousand pounds of 50# bags a week and doing all kinds of repetitive motions in a production job.

I picked 2, hope that's OK. I think mine was acombination of work, one time yoga injury, and 4 years of pregnancy and nursing....

Johanna

This is a good poll idea - so I'm bumping it up. :grouphug:

too many years (16) sitting at a desk, working on a computer, accounting work, trying to meet deadlines, working for the 1st, the 10th and the 15th of every month....telling myself your pain will go away on Saturday.

If only I would have listened to my body !!!

Ann

I checked accident (lifting, etc.) because I believe mine was caused by either a weight-lifting injury and the ensuing changes to my posture and physique, and it might have been further aggrivated when i siipped and fell several times after shoulder surgery 1yr ago. I have no way of really being sure though.

Good question Jo.
 

I was in bed with back problems and was put on valium and another med to get me up walking which it did but then I fell from the dizziness and lightheadedness from the meds and fell 12 more times after that. I always fell to the left side but then went to an Osteopathic Dr. that popped all of my bones and brought it to the right side. I ended up being worse off on the right side and had surgery on that side. I also had 3 inches of muscle taken out on the left side to help with my left side symptoms and it did.

As far as the RSD, I think I had it before the TOS surgery but just had too many other medical problems for it to be diagnosed so when I had the TOS surgery it came out. Luckily 3 blocks put it back in and now I ask for blocks before any surgery if they are available.

Knock on wood, but right now I am at the best I have been since I got the TOS, I am now lifting weights and able to carry some weight.

To me though, TOS and RSD just takes away any life a person has most of the time. I see very few that are able to work even after surgery.

Ada

My First Post
 

Hello!

My name is Rhonda and I live in the Atlanta, GA area. This is my first post, but I have been reading the posts here for a few months now. This is a great site. It has helped me tremendously!

I believe my TOS was caused by a congenital condition.

I was diagnosed with Klippel-Feil syndrome a little over a year ago at the age of 43. I have:

Congenital Vertebral Fusion at C2-3 and C4-5
Bulging disc at C3-4
Bi-Lateral Cervical Ribs
Mirror Movements (synkinesis) of upper & lower extremities (weird!)
Bi-lateral TOS - vascular (more so on the right side)
Raynaud's
Psoriatic Arthritis

Many of my symptoms overlap, so sometimes I do not know if it is the TOS causing my symptoms, or whether it is the degenerative arthritis in my cervical spine causing nerve compression.

I have always had problems with my neck and shoulders hurting, even as a kid. I relied on massages from my mom and dad, and now from my husband and children. I never knew that I had a real problem, it's just something I've always dealt with. My father always had problems with his neck and shoulders also. He passed away in 2001 without ever being diagnosed.

My most severe symptoms started in 8/05. X-rays revealed the bi-lateral cervical ribs and vertebral fusion. I remembered my dad mentioning "extra ribs" and fused vertebrae (which his doctor thought was caused by an auto accident he was in as a teenager). I thought this was too much of a coincidence and began doing my own research. I originally made a self diagnosis of Klippel-Feil syndrome, and then TOS, which has now been medically diagnosed.

This website (orig. BrainTalk) helped me GREATLY in understanding my symptoms. I had never heard of Thoracic Outlet Syndrome before. Many of the people posting on this forum were having the same symptoms as I was having.

It seems that all of the doctors I have seen have never dealt with Thoracic Outlet Syndrome, and especially not Klippel-Feil Syndrome!! I have actually started printing some of the posts here and taking them with me to the doctors so they have a better understanding of what I am dealing with. It seems to have helped.

I am taking Celebrex, Cymbalta, and muscle relaxants as needed. I also use a TENS unit, a Heat Therapy Pump, hot baths and massage for relief. Some days I feel almost normal. Other days, I can barely lift my arms, or use my hands. I can drive with my hands at the bottom of the steering wheel. My hands will sometimes get ice cold. The turn funky colors (blue, black, red, white)

The one thing that really concerns me is when I get this very tight feeling around my neck, like a scarf tied in a tight knot. I get a lot of pressure in my jaw, ears & especially behind my right eye. The vision in my right eye gets very blurry & doubled. After a while it returns to normal!?!

Sorry! I know this is getting rather lengthy, but I wanted to throw all of my funky symptoms out there for all to see..........

Thanks to all for this great forum!

Rhonda

Great post
 

Jo, this is a great idea!

Peggy

Hi Jo,
I responded to the poll a while back. I am bumping it up. Hugs, Roz

Hello everyone, I left a job I had been at for 10 years. It meant more money,and I was promoted to assistant manager. It was a VERY BUSY shop. No time for lunch, Saturdays were hell, 9 hours of doing hair. Standing with my arms raised, bent over a chair and shampoo sink, and all that repetitive hand manipulation. A typical Saturday I would do up to 35 clients. Lots of money for hairdressing, but where did it get me? I wish things were different now, but I can't change it.
TOS,scalene compression
double crush syndrome Bilateral carpal tunnel release
mild cervical compression c5@6
de-quervain's tendonitis
parascapular myofascial pain
Where there is nothing else left, there is hope

Bumping UP

bump up for good info

:bump: This is a good poll.... can'r believe I never saw it before :p

Think mine was related to a fall down the stairs, this perhaps unstabalised the thoracic outlet area and then my office job finally pushed me over the edge when i developed severe shoulder blade/hand pain 6 months later.

This is my speculation as dr's cant seem to comment on whether the accident could have anything to do with it (or even if i have TOS!)

That was exactly the work I was doing!!!!

I had never seen this post either. I have venous Tos, for what reason? We really just dont know... Spontaneously happened, probably due to being overly muscular in the upper chest area and the sports that I do.

I spent virtually all day at a desk, either reading files (looking down for long periods of time). Typing on and off all day and answering the phone (did have a headset).

Think it just took its toll on me after falling down the stairs!

Bumping up for anyone wanting to do the poll.

I answered "accident or some other means" and "cervical or other anatomical anomaly" because both relate to both sides. A accident or fall triggered each side due to a different anatomical bony anomaly. Left is a cervical rib, right was a large bone growth on the 1st rib.

Mine was extra cervical ribs AND bands. I had the bands removed in the early 1980s and it helped for a while. By 1996 I'd lost most of the use of my left arm and hand. It was awfully painful. I had the rib resection in 1996, just before being diagnosed with Sjogren's and Psoriatic Arthritis (but that's another story). I still have 2 bulging discs in my neck, but no one knows if they are from the TOS or the arthritis :confused:. I may be doing an SCS trial soon :winky:. Debby

bumping up

Interesting poll. I haven't voted within it because I've no idea what the causal factor or factors are for my TOS. I do work with a desk+computer for up to 8 hours a day, haven't had a recent accident or other acute stimulus for an injury, and have no extra cervical rib or abnormality, so work-related appears to be the most probable choice.

For those that know for certain that their TOS is work related, how do you know? Is it merely a case of picking the most likely culprit once other likely cases are eliminated? My neurologist did not attempt to deduct the cause of my TOS and neither has my phyiso. I do have the feeling that knowing the cause would be helpful but don't know how to achieve any level of certainty.

I think it would be good to try to figure out if your work might be a cause. or play a part in it.


Things to consider

how many years on the job?
is desk/workspace as ergonomic for you as possible?
is a cold air vent blowing on you at work?
overall posture? head/shoulder alignment= good/ poor/getting worse?
any other possibles activities that might had contributed?
weightlifting, playing musical instruments, texting, lots of x box/play station/compute gaming as youngster?

If any family members have similar body type & aches and pains - it could be a family predisposition.

I knew mine was work related as I could recover on the weekends but sx would appear by Tuesday again - 4 -10 hr days - so 3 days to recover.
finally I stopped being able to recover, tried to keep working by eating advil like candy.. but that is not a good thing for the tummy or gut..
so filed a wc claim and after awhile of light duty we decided it was best if I was off work so PT would have a better chance to do some good.

A car hoist fell on me and crushed shoulder and clavicle. went with injury

The only thing i could trace it back to is perhaps lifting in 2008. I used to do free weights and maybe one time i used weights that were slightly too heavy and or used bad form when doing it. I had a c5,c6 cervical fusion operation for DDD, and that only made my TOS worse and didnt even help my neck/back problem.

mine started out of the blue. i have no idea what caused it. i just remember being in an elevator in atlanta in 1997 thinking that my shoulder had been hurting for months and that i should go get it checked out. really weird, i always just kind of hoped it would disappear as mysteriously as it arrived. no such luck.

Although the past 5 or so years my symtoms have got worse I can go back almost 20 years when it all started. I got my GP to look at my medical file from before seeing him and there was problems 15+ years ago that can be linked with my TOS. I used to be able to have chiro, massage etc... but the past few years get short term relief. Now due to clotting and blood thinners all therapy is a no no. It took a long time to join the dots so to speak :(

For me it wasn't so much work related until the past 5 years but before that when I was raising my kids was when my neck, upper back and scapula became a problem for me.

Count me in the "Bi-lateral Cervical Rib" group. I knew I had them since jr. high. The ends of the ribs pop out in that little hollow area by the collarbone (no shoulderless outfits for me :()

I haven't been diagnosed with this, but if I am at some point.

It would be the accident area. Because I've had many accidents over
the years. But I also wanted to keep this bumped.

Donna:grouphug: