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