Tuesday, October 2, 2012

Interview- The daughter

As promised, the interview with the daughter about her continuing journey with TOS.
For some of the backstory, check out this previous post.  It is now seven years since her one-sided rib resection surgery.

So, daughter, how are you feeling lately?
"Lately, I've been having some pain (in my resected arm) and I'm not sure why.
This happens to me occasionally. I haven't been to a doctor about it in over six years, so it's probably time for a check up in the near future.
I don't want to discourage anyone else from surgery by admitting that I still have pain sometimes, because having that surgery was the best thing I could have done. I'd do it again if I had the symptoms in the other arm or (continue to have them) on the same side in the future."

What do you remember about your rib resection surgery?
"I had my surgery done a month before I turned 13. I suppose I should have been more nervous about surgery than I was. But, I  had just witnessed my older brother go through the ordeal a year earlier.
He came through it fine, so I guess I just assumed that it would all be alright."

"I had one nurse who was relatively new, and tried to take my blood pressure in my surgerated arm once or twice. (*I stopped them!) Other than that, it was all fine. Not scary or anything."

*In this photo, two hours after waking up from surgery, she has a keyboard and is sending emails to her friends. The resected arm side of her face droops. Her brothers face also drooped postop. It went away in a few days. She has an automatic morphine pump in her side. She went home with it the next day and it lasted several days. A wonderful thing.

"It took me a while to recover and stop having pain in my arm. Even while I was still having arm pain (postop) I didn't regret surgery. The pain was 10x worse before- constant and terrible.

Even though it took me about a year to stop having pain (after surgery)- it wasn't the same pain as before. I think it might have been due to my nerves being messed with, or agitation caused by physical therapy? I also had a biking accident two months after surgery... oops."

*Yes, eight weeks post-op, she was feeling good and riding a bike. Cringe.

What do you remember about physical therapy?
"Well, I think it's necessary to help build back up movement and muscle and make sure that you don't heal all frozen up. But I think at times, my PT's pushed too much and flared up symptoms. I'm not sure they were used to working with people with TOS?"

Do you feel TOS is affecting your life now, and if so, how?
"It still limits me. I've had to learn my limitations for doing things.
Had to learn to explain my "mutation story" or "extra bones" to people so that they wouldn't hug me too tight, or hit me in the shoulder playfully, or heaven forbid- try and give me a neck rub!

My armpit/back of my arm is numb/hyper sensitive now. If I ever bump into things or get hit there, it feels like I'm being stabbed with needles. I think a nerve of mine was affected a bit in surgery.

Also, carrying purses hurts my neck. I try and always pull through parking spaces because it hurts to crane my neck to back up. Washing my hair takes a long time, and I wake up every night with my arms asleep or in pain because they weren't in the right position.
I use heating bags a lot on my neck when it hurts. I use a nifty little clip for my seatbelt when I drive- which helps a ton! I even bring it with me when I ride in other people's cars."

Ever get pain in non-resected side?
"I've only ever had TOS-y pain in my non-resected arm a handful of times. If I ever started to get constant TOS pain in that arm, I would definitely have surgery.
However, I would definitely glean more knowledge about different ways it can be done, like resecting the cervical rib, or having the surgery above the rib instead of under the arm.
I'm just curious if other people's experiences are better with different kinds of surgery. The only people I know (you and my brother) have had the same surgery and seemingly the same side-effects, so...yeah."

What advice would you give someone new to TOS?
"Learn about the monster- learn what makes it tick. Your life won't be the same, but you will only make it worse if you resent and ignore it and try and carry on like usual.
But don't be discouraged!
If you don't know TOSers, get to know some!
Get advice and gain knowledge about your options, and find people you can empathize with.
I was fortunate I had two other people to go through this with."

~ ~ ~

*I hadn't thought of feeling 'fortunate' that all three of us have to go through this TOS journey... interesting positive outlook on our situation. We do have each other, like a mini TOS Support Group.

Guess that does make us oddly fortunate :)