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!

I've had TOS for 5 and 1/2 years. I had a left rib resection and scalenectomy almost 3 years ago. Over time I've gotten worse. Surgery took away a few symptoms (tight feeling in hand and near elbow), but all the nerve symptoms remained and I developed migraines.

I went to a new pain doctor last week, and he's looking at my neck again, and mentioned MS. He also said TOS is a "controversial" diagnosis. We've all heard that before. So, anyway, I've had something for 5 and 1/2 years.

Kelly

"Controversial" - a word brought up in this post and in one from ihtos in her (hopefully only temporary) good -bye. Sadly, I think the controversy is actually a misunderstanding, or even non-understanding, in the medical community in general about this. Perhaps becasue it is so difficult to diagnos? It sounds to me like those who experiance symtoms of neorgenic TOS get the run around from doctors for up to years, before they get a clear diagnosis.

In a sense, my TOS diagnosis was pretty simple. Subclavian vein blood clot = TOS. Within hours of being admitted to the ER, they knew exactly what it was and why it had happened - and they got right to buisness to make me better.

I cant even imagine the frustration that some of you have had.

My 1999 RSI might have been a precursor to the major onset in 2003, I also had upper back, neck, shoulder problems each year in between.hmmmmm

If I only knew then what I know now .. LOL
Might have been able to avoid the chronic/lingering discomfort stuff.