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 :)

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.

TOS...it's complicated.

If you've happened to wander upon my blog, be sure to take a minute to back track and read about the beginning, about how my kids - son and daughter, have the same condition and how it has affected our lives. I blogged my way through healing from rib resection, and my continuing journey...with TOS.

The Labels along the side may be of some help if you are looking for somthing in particular.
I hope you find some helpful tidbits here.
Feel free to email me if you have a question.
"It is what it is."
Life moves on, even with TOS.

Address the Fear

My daughter worries.
What will her future be like?
When will the symptoms appear on the other side with the same constancy that moved us to pursure rib resection a few years ago?
What jobs can she get with limited use of her arms?
She worries over what may bring on the pain.
Should she even try for jobs that require lifting, or repetitive arm movement, or will that aggrivate matters?
Should she even consider certain career tracks that may be appealing to her because she may not be able to follow through?

She is at school now, carrying loads of books and stuff several floors of stairs up to her dorm. Her arms throb. But she does not want to complain, she wants to be like everyone else.

Oh, those cervical ribs.

She has had to quickly educate her friends about TOS, asking them to not hang their arm around her neck or hug or try to massage her shoulders.
Every time these questions come up, I remember well the advise of the Doctor. However, my thought is to give it a try! See what happens.
Don't let a diagosis hold you back.
Learn your limits by giving it a try.

Maybe you can't do as much as everyone else, or do things the same way-but you can adapt, adjust, learn and find ways to accomplish your hearts desires.

How to alleviate fear?
Education!
Support!
Ask for help!
Health resources
Medications
Prayer

Being open, honest and flexible regarding options for treatment and assistance is key to living the fullest life possible with TOS.

The symptoms continue

I talked with my son on the phone the other day, asked him if his arm ever bothers him now since his rib resection in 2005.
He said yes.

My heart dropped.

"But, he said, not like before surgery.
It hurts sometimes, when I'm walking around for a long time with it hanging down. I still have to hang my hand on my opposite shoulder to relieve the gravity pulling down on my arm.
Only once in a while, but yes, it still happens."

My son was the first one to blaze the trail of rib resection surgery in our family.
My heart is sad at this news of his continuing symptoms, because I know all too well that ache can keep you from plugging into life when it gets intense.

I wonder what could help him now?

Sigh.

Pep talk from someone who really understands

My daughter actually gave me peptalk a few days ago thats really helped.

Sitting across the table from me, she said

-"mom, youre GONNA get better. Dont you remember how I had trouble after surgery the whole year in gym class, I couldnt hang my arm down, but eventually the pain went away. Yours will go away too."

Boy, did I need to hear her say that.
See, she understands.
I'm really blessed by my kids, who unfortunatly have both had TOS (& cervical ribs)to deal with.

Several people, who are 'normal' or who have not lived with TOS, have tried to say encouraging things to me during my recuperation. But when someone who has been through what you are going through says the exact same words of encouragement-theres depth of understanding along with an empathy to the words that give them authority to authentically encourage.

So now I'm trying to change my mindset and move on with my life.
Trying to not marinate in my physical situation with TOS, but find a way to keep living.

The pain is not as bad, but still my daily companion.

Sure has a way of changing your life, pain does.

Back track-about my kids' TOS experience-our son

Our family has the unfortunate experience of having three members who've had to deal with TOS.
My son began having constant nagging arm pain around age 14, when he went through a growth spurt. Suddenly, he could not walk around for long periods, even though he had been otherwise very healthy and played sports.
He would hook his hand onto his opposite shoulder instead of letting it hang by his side to try and relieve the aching, and after a bit he would have to go sit down.
We saw the doc, they took xrays, saw that he has bilateral cervical ribs and suggested we consult with a specialist.

We got online and started searching for a doctor.
It was 2004.
We saw graphic surgical photos that nauseated and scared us about the surgery that could possibly help our son.
We cried, we prayed.
He continued to hurt.

Then a few days into our search, we found a TOS surgeon who had run a TOS clinic for years...locally.
We consulted, he recommended surgery.
Our son had a left rib resection the summer of '04.
Three weeks later he was off all pain meds.
Three months later doc cleared him for football training camp.
He healed crazy fast, did excellently.
I had him send a thankyou card and picture of him in his football uniform to his surgeon.

Little did we know we would be back the very next summer with our daughter.

Our kids' TOS-the daughter

So you know our son had TOS, a rib resection, and did fabulous.
The following summer his kid sister grew a couple inches and began... having arm pain.
Yes, here we go again.
We xrayed. There were bilateral cervical ribs.
We tried some physical therapy for a few months, to no avail.
We requested a consult with our sons surgeon.
He did the tests, recommended a rib resection.
So, the summer of 2005, our daughter had a right rib resection.
She did great, she even emailed her friends from the hospital within hours of waking up from surgery!
She went home the next day.
Six weeks later, she was riding a bike and loving life again.
She did a month of physical therapy.
Shes doing great now.

Her only complaint, as is our sons, is that her armpit is numbish, which makes shaving difficult.
But the arm ache is gone.

So after all that, when I showed up 2&1/2 years later to see the sugeon for myself, I suggested we should get a punch card discount family plan for these rib resections!!
And I meant it:)