TOS Resolutions for the New Year

* An MRI, to see what's going on since rib resection back in 2008, since my daughters rib entirely regrew and I continue to have nerve/muscle issues.

*Flouroscopy guided injection into spine, C4, to see if that helps

*Try acupuncture

*Work on core strength and stability at the gym, continue with physical therapy for upper body at home

*Meet more of my fellow TOSers, hopefully for a 5K walk/run

*Continue to tweak the TOS diet, more green smoothies, fish, etc...

*Essential oils-research, try.

*Try Biofeedback

*Figure out better, ergonomic seating options, especially for time on computer

*Keep diggin' into this TOS thing, learn more, understand

*Kick TOS in the butt

*Share my journey and encourage my fellow TOSers that even though the pain can be horrible, life can still be good.

*Live well!!

Adson Maneuver, EMG, CT Scan- TOS Tests

Info on EMG/Nerve Conduction Velocity Test  - http://www.webmd.com/brain/electromyogram-emg-and-nerve-conduction-studies

Adson Maneuver-



CT Scan - my non-medical description, you lay on bed, slide in tube, wear earplugs, loud noises while machine takes pictures of internal layers. Painful if asked to hold arms above head.
http://www.ncbi.nlm.nih.gov/pubmed/2704801

Xray, Ultrasound, MRI - http://www.mayoclinic.com/health/thoracic-outlet-syndrome/DS00800/DSECTION=tests-and-diagnosis

End of the year updates 2013

First, much love and appreciation for those who have contacted us and expressed questions, thanks, and shared their own TOS journeys with us. It means more to me, to us, than you know to be able to share this journey with you and hopefully encourage each other along the way.

So the daughter and I trekked to a University hospital a week ago so she could get the testing that I was supposed to get. I let her jump the line because I think she needs relief more than I do, and because I'm a mom.

She had EMG, nerve testing, very painful, needles poking around to test nerve function. The frustrating part was the person doing the EMG commented they "...do not really believe in all this 'TOS' so much..."  Which makes me flippin' crazy. I reminded my daughter that technician is not a Doctor, so they can have their opinion, but its not worth so much.  (Images borrowed from google).

Then we waited around two hours to go for CT scan, laying on stomach with arms overhead, head facing one direction. The scan was with contrast, which if you've had done you know has interesting warm sensations as it goes through your system and leaves you jittery afterwards (actual picture of daughter with contrast stuck in her arm below). They had to turn her over when the scan was done because her arms were numb. Not a great day for the daughter. Now we wait til early January to go back for more tests and the Doctor consult.

This physician, (I am told by a fellow TOSer who was kind enough to share their experience with me from the facebook TOS group-thanks!), does remove the cervical ribs, and he does utilize supracervical approach. This is good news because our previous Doctor uses transaxillary approach and we wanted a different opinion, to see if removing the cervical ribs would be preferable.
So...here we go, contiuing down the TOS road in 2014. Scary, but I just keep hoping for relief, and ya' gotta have hope.
Gentle hugs to all our fellow TOSers! We will keep you updated on this journey.

Why is is called "The Waiting Game"?

...because it is not a fun game.

Once again, we're waiting on referrals and test results.
I wish there were more to report, but those of you dealing with TOS know all to well the run-around we get when we're trying to get answers.

Meanwhile, we have no choice but to wait and deal with the pain that affects our daily lives the best we can.

I am doing well. I had a flareup a couple weeks ago when I went for pool therapy for my hip and the therapist had me in the deep end with my arms up on a floating pool noodle.
It felt fine while I was in the water...but on my drive home the neck and arm ache started and I was kicking myself for putting my arms up in that position...and for two days on ice and pain pills I continued to kick myself.
(The therapist puts me in a floating vest now, no arms up!)

Stay tuned for reports on how my daughter is coping eight years after rib resection with recurring sympotms and what the second opinion doctor has to say.

We'll keep putting one foot in front of the other on this journey...with TOS.

I'm not broken, just bent

I learned at a consult a few weeks ago that my upper spine is curved a bit, possibly as a result of having a rib removed on one side and not on the other.

I was counseled that I should reconsider resection of the opposing side rib because the imbalance may be the cause of my continuing back spasm and pain issues.

A new MRI and a consult are in the works.

I'll keep you posted.

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.