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 I originally made a self diagnosis of Klippel-Feil syndrome, and then TOS, which has now been medically diagnosed.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