Questions:

How long have you had TOS?

Do you think it's gotten better or worse? In what ways?



I've had TOS five years.

In year 4 I had my right rib resection, and as a result, I didn't have headaches for over a year, (although they are now back about 30%.) Also, the vast color changes and swelling went away. The RSD calmed down. The "suicide pain" (the highest pain imagineable) has almost completely gone away - I still have occasional bouts, but most of the worst pain is about a 9, rather than the level where I just can't believe it could go...

Overall, in five years I've gotten generally worse since I am usually (90%) bedridden, and need an aide in order to survive. (As almost everyone knows, before TOS I was working more than full-time, worked out or ran almost every day, and I travelled a lot.)

P.S. You do not have to participate in this, if you prefer not to. I just wondered about other people's experience as far as "time."

Howdy!

"How long have you had TOS?"
It's almost 9 years

"Do you think it's gotten better or worse? In what ways?"
It's sooo hard to tell. 'cause pain and numbness levels change
everyday.
I'd had amazingly wonderful almost pain and numbness free days
during my trip to KCMO. Then they came right back on my way back
home (during the flight back to Japan!!).

Yasuko

Hi Tam,

I've had TOS all my life (extra ribs, etc) and had episodes since early childhood but never knew what the muscle spasms and migraines were from.

I began having sx (weak arms, painful elbows when carrying the lightest of bags) in 1995. Didn't get dx until 2000. I tried to ride it out for another 4 years - by then the sx were unbearable. Had 4 surgeries from Jan. 2004-April 2005.

Surgery relieved the swelling hands and severe daily sx, but I still am unable to live a normal life. Migraines come and go with weather systems and are more frequent in fall, winter and early spring.

I've had TOS for 3 1/2 years.

The last 2 years of it have been so much better due to surgery Sept. 2005.

Still suffer some from time to time and I guess I always will.

Peggy

First symptoms were in 9/98 after surgery. I was either misplaced or dropped during the surgery. Immediate pain in jaw. I could not eat. I was put in traction and hospitalized for 1 week and then home traction for around 2 months. One doctor said it was Lyme disease. What a joke. The others said it was a herniated disc. I had disc replacement surgery 6/99. Did not help. The doctors thought I just wanted more pain medication when I said I was still in pain. After seeing my neurologist, then Dr. Schwartzmann in Philly, was sent to Dr. Togut for the real diagnosis. Dr. Togut performed the rib resection and scalenectomy in 2000. About 1 year later Iwas pain free. I have suffered a set back since 2006 but would not trade those 6 years for anything. I gave birth to my 4th child, a daughter who is the light of all of ourt lives. I am in pain but it is controlable. I beleive I will always suffer from symptoms but if I can live a fairly "normal" life, that is ok. I am sorry for all of you TOS'rs who can't. It is a horrible syndrome that more needs to be done about. Linda

I am saddened by your posts, but also, it is important to note how different each one is, by small parts...anyways.

My best wishes for each poster, for a better day...and thank you for sharing your story with me, and not taking offense to my question - it was not meant to intrude.

I've had TOS for only 7 months!

Doing great after my surgery, like Peg, but will probably always have some symptoms for the rest of my life. And like Linda am so sorry for the TOS'rs who suffer daily with the pain associated with this. If only there was a full proof cure!

Linda you are the first person that I have seen talking about eating there are many times I am choking on my own saliva as gross as that may sound to others here I gag to the poit of passing out!!! I am still the new kid on the block to TOS@ 3yrs and it has been a roller coaster the intrathecal pump has leveled me some and sure once they get me up to a theraputic level and I get out to Denver for surgery thing will get better.

My attitude NOW is that I can't think of life in terms of "what will happen in five years? Will I STILL be this sick? Who / how will I be cared for? What if I am homeless?"

That thinking will drive me crazy. (I've always been a big goal setter.)

So now, instead, I think:

Can I get in some low impact exercise this AM, this PM, or today?

How can I lower my pain today?

How is my diet / what am I putting in my body today?

What can I do to help my daughters (via phone, with advice or showing love), or for my friends, today?

If the answer to these questions are that I can't do anything today, just bed, just dealing with the high pain, then I accept that for that hour, 1/2 day increment, etc.

It's all about "quality of life" for this day, this hour.

How long have you had TOS?
I've had symptoms/problems for 13 years and after seeing countless doctors recieved a "probable" diagnosis of TOS 6 years ago. I'm dealing pretty well with the pain right now.