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.

A Day in MY Life With Thoracic Outlet Syndrome

It is 6:48 am. My dog is staring up at me over the edge of the bed, whining and doing her potty dance. I roll to get up off my chiropractic mattress and realize I should not have slept with that pillow last night.

My feet land on the floor and I reach back to rub my neck as I head toward the door to let the dog out. I attempt a 'systems check', turning my head slowly, left and then right, and back to the left, bending my arm and rotating slowly at the shoulder.

Feeling pretty good this morning, I think to myself.

Mind you, this is compaired to having constant ear, neck, jaw, back, and arm throbbing for several years due to Thoracic Outlet Syndrome before my right first rib was surgically removed through my armpit. Yes, compared to that- I think I'm feeling pretty good this morning.

While the dog does her morning business outside, I get the coffee started; half-caff...or decaf, depending on the morning. Too much caffiene would surely tweak my already strained nerves and tip off a cascade of effects that cannot be turned back once they begin.

I recently decided I had no choice but to chop off my long hair. The weight of it all was just too much for my weak and grumpy neck muscles that have to compensate postop from having been partially removed.

I apply deodorant, and cringe as I rub the stick over my rib-resected armpit, enduring the now familiar prickly numbness from nerves that did not fully rebound postop. Turns out that having a large mans hand in that small space stretching out your nerves complicates things a bit.
Did I get it on? I wonder.  I have to actually watch myself smear it on to be sure.

Before I head out the door I take a deep breath and wash down some pills, stuff my cell phone in one pocket, my little pocketbook and keys in the other pocket, and head out the door. I miss being able to carry a purse and feel prepared for any emergency. It wasn't a tough choice though really; cute purse or throbbing arms? Enough said.

As I head down the driveway, I instinctively pull my seatbelt out and hold it away from me as I drive. The pressure of the belt against my neck and shoulder causes that pinchy pokey nerve pain that eventually escalates into throbbing constant aching- and I cannot bear that. So I compensate, and pray as I drive with my seatbelt sortof on that God might protect me and any police officers will be understanding. (Update: I have since received a letter from my doctor-per state law- stating that I need to adjust my seat belt for medical reasons, and have begun using a belt clip that holds the belt away from my neck.)

I get a text from my daughter, who is away at college. She wants to followup with the surgeon soon because she is having recurring symptoms since her resection in 2005. Both our kids also have Thoracic Outlet Syndrome due to cervical ribs (an extra set of ribs in the neck) and have had a rib removed through their armpits too. We have comiserated about our numb armpits. I sigh as I read her text, breathe a little prayer and make a note to call the doctor when I get back home.

After my apointment, I stop at the grocery store. I've gotten used to parking far away from the store, out where I can pull through two parking spaces so I don't have to wrench my neck around to look behind me to back out of a parking space. A couple seconds too long in that position and the pain in my arm coupled with the very real possibility of a blood clot in my non-resected TOS side prompts me to not care about having to walk a little further into the store.

I only need a few things from the store today, but one of them is milk. I know from experience that the weight of several pounds of milk hanging from my arm would definitely pull down on my neck and shoulder, squish nerve,s and set off that darn chain reaction that does not stop once it starts up. It also makes my hand turn a nice shade of blue; and blue doesn't match my outfit today -so I'll just grab a cart.

I run into a friend I have not seen in a while. She wants to hug me, and being the people pleaser I am, I oblige; even though my experience has taught me that I am always just one too tight hug away from a flare up of nerve pain misery.

The day winds down and it's been a good one, productive, with lots of adjustments along the way to avoid flaring up. My physical therapist would remind me that awareness is key in managing my symptoms.  I must always be aware of what my body is telling me. Listen. Pay attention. I have to do regular mental systems checks. Is my posture off? Is my head turned slightly to one side?  It is definitely a juggling act to live with TOS.

Always having to pay attention to these little things in order to avoid incapacitating pain is a skill one hones over time out of necessity. Why that throb in my arm, but only to the elbow this time? I notice my bra straps are a bit tight, so I push them out to the edge of my shoulders, away from the tender nerves and arteries that cannot take the pressure.

The dog is back. She is looking pittifully up at me with those sad eyes asking to go for a walk. I clip her leash onto my belt loop, and bend my arms up at the elbow as we walk to avoid any arm and hand throbbing by letting them hang down.

It's time for bed now. As I drift off to sleep, flat on my back without a pillow, I wonder about what tomorrow will bring? What adjustments will need to be made?

Whatever it brings, I'm just thankful I've gotten this far along on the journey, even with TOS.

Invisible Illness Week - September 10-16, 2012

TOSers know how frustrating it is that people can't tell you are in pain just by looking at you.
We know all about that pat on the back, or the too tight hug from a well meaning friend, or the awkwardness in having to go through the long explanation of what your physical problem is, knowing they will not understand.
That is why I believe in the cause of the site - www.invisibleillnessweek.com - You can search there for articles relating to your experience and find support. I submitted an article under the My Story section about my own experience. Please go there and support the great work they are doing bringing awareness and education to the issues we face with the invisible illness of TOS.