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.

More email questions...

Another recent email asked what a typical day is like for me now after one side rib resection. Some of my reply...

I do not need pain meds most days.
However, I do take several of nutritional supplements and have changed my diet drastically hoping to reduce inflamation.
*Future post in the works on diet, inflamation and their possible link to TOS.

I DO drive, but I have to hold the seatbelt away from me.
I have quality of life, and live without debilitating pain for long stretches.

The deal is, I never know when a flareup will occurr-like a dark cloud that follows me around all the time.

This uncertainty gets to be a big mental roadblock for me to have to push past so that fear does not keep me from living.

Before surgery, I hurt all the time and got even worse flareups!

Now, I feel good, some constant muscle tension in my neck/shoulders, but not unrelenting pain. Some slight ache in my arms at times. (I don't always mind my own advice about posture.)

If I overdo it, say too much driving, or carrying something, the arm throbbing starts in and can get pretty brutal. Moreso on the side that has not been resected yet. It slowly goes away within a day or so.

Flareups of pain have occurred randomly over the last few years since surgery.

It has gone as long as several months inbetween acute flareups, and it has been as little as a couple weeks inbetween episodes of acute pain.

My Dr. said he also took as much of the c-rib as he could, but really just the tip, so I still have most of both cervical ribs.

I sometimes wonder if it might have been better to have the actual crib removed up in the neck, but I did alot of reading on that procedure and personally felt more confident in my doctors transaxillary(armpit) approach.

I've learned to break things down into smaller tasks-carry lighter loads, move a little easier.

I was quite down in the dumps before my surgery and during recovery- you could say depressed. Pain has a way of being depressing, to say the least.

I too was so afraid I'd never get to live the same again-like my old self before the pain.

I am thankful to report I do not have debilitating pain most of the time now.
The flareups do get me down occasionally and remind me I have to be vigilant with all the things I juggle, reading, learning, trying new things to avoid pain.

It has helped me tremendously to feel informed and understand medically what is going on with my body.

I hope that answer your questions.

Take care!

TOS Questions

I was recently asked via email if I regret having the rib resection surgery, if I have returned to work, and if I plan to have the left side resection.


My response...

"I do not regret having the surgery.

My pain was constant and unrelenting prior to rib resection, as was the case with both my kids resections.

However, all three of us continue to need to be mindful about our TOS and not do certain things that aggrivate it.

We each continue to have flare ups and intermittent pain.

Recovery from rib resection was difficult for me, being older.

I may have surgery on the left side-if the pain becomes unmanageable.

And no, I have not returned to work per my Dr's recommendation to avoid work requiring "lifting, repetitive arm movements, extending the arms, etc. Once you have TOS, even after surgery, you always have TOS." Very difficult to find work with all those exemptions!

I hope my experience is helpful to you.

Take care,

~Robin"

**I am always happy to answer any questions-feel free to email me.
My hope is that at least my pain can help someone else dealing with their journey with TOS.