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.

How I was diagnosed - A 20 Year Journey

"I can make a diagnosis of thoracic outlet syndrome but the etiological factor can escape at the present time unless there is a severe case of a large cervical rib."
-Carlos A. Selmonosky, M.D

~ ~ ~

I was recently asked how I was diagnosed with Thoracic Outlet Syndrome.
The answer is complicated, as it seems to be for most folks with TOS.

I began with symptoms of Torticollis in 1987, with many repeated rounds of neck-locking up occuring, followed by meds, physical therapy, xrays, MRI's, CAT scans, referrals, chiropracters, at home traction, neck braces, TEN's unit...you name it-I tried it.

I went on living normally inbetween these episodes of frozen neck until 2003.
I was in a car accident and the whiplash stopped me in my tracks.
I was sent for more x-rays and physical therapy.
When three months of that only left me in more pain, I sought out yet another chiropracter, who upon inspection of my xrays, informed me I have cervical ribs.

All those years, all those tests and Doctors and xrays and no one thought to point out to me I have these two extra bones in the area where I have had so much pain.

I began reading and learning about cervical ribs, and continued attempting therapy at home.
The following summer my son went through a growth spurt and his arms began aching terribly. When xrayed, it was noted he has cervical ribs and would need to consult a specialist for possible surgical decompression.



It was in the appointment with my sons surgeon, as he was receiving his diagnosis of TOS, that I knew I also have TOS.
But it would be four more years before I would visit the same doctor for my own symptoms...because my teenage daughter cropped up one year after my son with arm pain and-you guessed it--cervical ribs and TOS!

So eighteen months after my daughter went through surgical decompression, I decided pills and physical therapy, massage and deep breathing were not going to change the situation with these extra bones causing pain in my body.
Besides, if my kids could be brave enough to go through rib resection, so could I!

Once I went to see our family TOS surgeon, I was an easy diagnosis.
My Dr. ran tests-the in office tests-bp, raise hands, twist, turn, strength check, push, pull--then Doppler tests, MRI, x-ray.
Doctor said with my history, my childrens history, and the cervical ribs it was plain as day I have TOS and could benefit from decompression.

And there you have it, my Twenty year journey to a diagnosis.