They're baa-aack!?

One member in our family of three with TOS - the daughter- has been experiencing recurrence of pain. We obtained updated xray and MRI recently, and requested a copy on disk to take home.
Our mouths dropped open when we saw what looks to us to be a fully formed, regrown first rib...which was *removed* years ago.
*We are not radiologists, with no experience reading these test images....but it sure looks like the rib grew back.
We are flabbergasted.

**Update--We got a copy of the xray that was done immediately after rib resection and compared it to the new xray, and sure enough...the whole rib is now present where it was once just a stump.  Not cool.
I'll post the pics after our second opinion consult.

We are told it takes forever to get into the specialist we are waiting to hear back from for a second opinion on the situation. When we know more, we will let you all know about the next step in this TOS journey.

Some interesting information I've run across online about rib regrowth...

http://www.drbrantigan.com/physician/multidetector.htm
"... the first rib has regrown..."  (shown in CT scan pictures).

From this article- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1849872/
"...patients with recurrent TOS symptoms for removal of rib remnants and regenerated fibrocartilage..."

"The primary technical factor involved in recurrence seems to be incomplete extirpation of the rib during the first procedure. If a rib remnant is left (as most surgeons outside of our group do), osteocytes, chondrocytes, and fibrocytes grow from the end of the bone and produce fibrocartilage and regenerated bone that compress the nerves."  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1849872/

TOS ~ Life XIX

Why is is called "The Waiting Game"?

...because it is not a fun game.

Once again, we're waiting on referrals and test results.
I wish there were more to report, but those of you dealing with TOS know all to well the run-around we get when we're trying to get answers.

Meanwhile, we have no choice but to wait and deal with the pain that affects our daily lives the best we can.

I am doing well. I had a flareup a couple weeks ago when I went for pool therapy for my hip and the therapist had me in the deep end with my arms up on a floating pool noodle.
It felt fine while I was in the water...but on my drive home the neck and arm ache started and I was kicking myself for putting my arms up in that position...and for two days on ice and pain pills I continued to kick myself.
(The therapist puts me in a floating vest now, no arms up!)

Stay tuned for reports on how my daughter is coping eight years after rib resection with recurring sympotms and what the second opinion doctor has to say.

We'll keep putting one foot in front of the other on this journey...with TOS.

Here we go again...

If you have read the tab My TOS Story, then you will remember that I knew I had TOS long before I went to talk to the doctor about my symptoms because I had two kids with TOS pain and I wanted them to get relief more than I wanted it for myself.

Well in my last post, I mentioned I would be looking into more tests and consultation about my non-resected side in the near future. However, it looks like that is on hold now because, as was the case a few years ago, my daughter needs to see the doctor far more than I do right now. She is experiencing recurring and increasing TOS pain in the side she's already had resected.

So, I'm putting my own issues on the back burner and waiting to see what the next steps are for my daughter, who will take the referral that was meant for me.

Because when you're a mom and you see your kid is hurting, you just want to take the pain away. So that's what's up.

I will keep you updated on out journey...with TOS.

I'm not broken, just bent

I learned at a consult a few weeks ago that my upper spine is curved a bit, possibly as a result of having a rib removed on one side and not on the other.

I was counseled that I should reconsider resection of the opposing side rib because the imbalance may be the cause of my continuing back spasm and pain issues.

A new MRI and a consult are in the works.

I'll keep you posted.

TOS symptom chart

From http://tos-syndrome.com/old1/newpage4.htm

Big Medical Word Of The Day - Supernumerary

I don't know about you, but I know I just hate it when I'm at a doctor appointment and the doctor finally walks in and starts talking with medical words that make my brain cramp.
Sometimes I wonder if they throw out their medical terminology to purposely intimidate, at least it sort of feels that way.
I will never in my life forget the first meeting with one doctor in particular. I was shaking in my boots within three minutes with all the medical language I didn't understand.
Since then, I've been on a quest to learn the meaning of big medical words, to take the power of fear away from any doctor who would throw them out like darts.

It occurred to me that I should blog a series on Big Medical TOS Words, to help all of you not feel so intimidated when your doctors use these words.
So here you have it, the first in a new series...
~ ~ ~
The word for today is Supernumerary.
I especially like this one because it's such a big, scary word, but it's meaning is so simple.
It literally means 'extra', or 'more',  "exceeding the usual number". (linked to Miriam-Webster dictionary definition).
Yes, that's it...'supernumerary ribs' are simply...extra ribs.

See, doesn't sound as bad when you understand it.

**Stay tuned for more, Big Medical TOS Words!