So many questions

It was a lovely morning, sipping hot coffee, doing some reading, enjoying the quiet. Then I stretched. Stretching is an autonomic response, like yawning, tough to control when the need hits you. I moved the wrong way and muscle grabbed onto nerve on left side of neck at the base and pain level shot from the usual 1-2 I'm used to, to a 9, which makes my brain freeze. I can't think straight, I'm in restless panic mode, even though I've been through this locking up so many times I know what to do...get heat pad, swallow muscle relaxer & pain pill asap, hot shower, lidocaine patch, try to relax, even though with every breath I can feel muscle raking over nerves, muscle spasming, tightening, stiffening.
I pace the kitchen floor holding my neck, massaging, trying to push the cervical rib forward hoping that will stop the sharp knife in my back pain, which usually works for minor pains, but not this time. I need my husband to tell me to get in a hot shower, because I'm stuck in a panic loop, pacing and muttering "I don't know what to do...I don't know what to do..."
I do all the things I know how to do to try to alleviate the pain, but still it jabs, burns down my arm, throbbing. I pick up my cell phone and lying on the couch taking shallow breaths, I tap out a plea to my fellow TOSers...asking what helps them with their pain. They respond with helpful ideas, encouragement, even possible food choices to reduce pain. Pickles...who knew!?
Still frozen today, had to call my job to let them know I can't work tomorrow, again. I've been thinking maybe I am not reliable enough any more with this unpredictable cloud of TOS hanging over me. I think I have a lot to offer, but I never know when symptoms might shoot from a 2 to a 9. The brain-lock I had yesterday scares me the most, that I just couldn't think straight overcome by that sudden pain.  Lots of thoughts and questions running through my tilted head today.
Looks like heat pad on a timer has been off a while. I'll turn it back on and go think some more. Much love and appreciation to all my fellow TOSers.

Interview-The son

I interviewed my son recently about how he continues to live with TOS as part of his life.

It has been eight years since his one-sided rib resection. He was 14 at the time of resection, and the one who blazed the TOS trail for my daughter and myself.  I hope you will find some hope in the experiences shared here, and helpful information, even if it gives you more questions to ask.

Now for the interview... 

So, son, how are you feeling lately? Do you feel TOS is affecting your life now, and if so, how?

"I feel good. I don't pursue certain jobs-like lifting.  I feel like I was told things to avoid (postop) but because I was young and in shape I have ignored most things. Now (eight years later) it's catching up with me some and I wish I had listened more.  I'm finding I'm having problems with the same shoulder,(the same side I had resected). I think the pain is related to thoracic outlet -I think. It feels like it."

Ever have problems or pain with the other arm?

"To a much lesser extent, I do. I still get some of the same pain I had before surgery in certain scenarios; it's a much lesser degree- bearable.

Is your armpit numb where they took the rib (transaxillary)?

"The underside of my arm is numb, the pit is not. The feeling is 'different' but not numb, hard to describe. It's lumpy."

Would you have surgery again?

"If the pain and ache got to the point same as before-I would, yes. The doctor said we (he and his sister) would probably need surgery again on same side eventually,(because they were so young when they had the resection)."

(Ugh. I had forgotten about that).

Does anything aggravate your arm, neck, shoulder TOS pain to start up lately?

"Oh, standing in line, walking around with my arms hanging down aggravate it.  I've become accustomed to the feeling of some amount of TOS pain, so I don't notice it half the time."

Anything else that continues to be a problem for you with TOS and the cervical ribs?

"Well, no one is allowed to massage my neck-not even my wife. It's tender and does not feel good-hurts to touch those muscles at the base of my neck.
Mainly I just feel limited by TOS because I can't pursue any job lifting. I expect fully that someday I won't be able to golf, etc.  If this keeps up, when I'm grandpa's age I won't be going golfing. Maybe I could if I took better care of my arm.  I don't know if it'll matter."

Any other pains or issues you have now that you associate with TOS?

"My arm aches and tingles if I ignore it a long time."


What advice would you give someone new to TOS?

"Get surgery done-sooner rather than later. My experience has been positive with surgery. 
The night after surgery was the worst of my life; not pain in my arm but from puking, anesthesia and feeling nauseous and tired and crappy. At home (postop) I was drugged enough (the first couple weeks) I didn't feel alot. I recovered extremely quickly.
Remember?... I went to football camp!

Yes, (cringe) I remember.

*Stay tuned for Interview - the daughter, coming soon.

"Be a professional apple-bobber!"

"...or a soccer ball tester."
"...or a grape stomper/juice maker."

These are some of the ideas I've received after I tell people about my doctors assesment of my employability at my appointment with him today.



When I asked my doc about going back to work and what I had to avoid he said-

"NO doing any; overhead, shoulder level, repetitive arm motion, lifting, or office work using a computer/mouse. No excessive talking on the phone without a headset."

But other than that, I can totally go back to work. (smirk)

So if you have any bright ideas what someone might do to be gainfully employed without using their arms, feel free to suggest!