The latest

 Update on all things TOS related: I do not and have not had TOS pain issues in several years. My Right sided frozen shoulder resolved over the course of a year. Now my main complaint is my crappy knees and back. But TOS is not an issue for me any more-knock on wood.  Granted, I still sit in the middle when watching a screen, never looking to the right or left for prolonged periods. I still use a loopo seatbelt attachment so the belt does not press against my neck. I still can't wear scarves, necklaces or anything tight around my neck. But the excruciating pain I suffered back when I started this blog-that is not an issue anymore. I hope you are well, finding relief, and living well-even with TOS. Much love.

 I now have right side frozen shoulder.

My first rib was resected on the right side several years ago.

I've been mostly TOS symptom free for a few years.

About six months ago I started getting soreness at the ball end of my shoulder.

I've pushed through and still done my normal chores, lifting, etc.

Now I can not hook my bra in back, nerve pain like my shoulders out of joint hits me if I push it too far.

I'm glad it does not hurt all the time, only when I move certain ways.

Sleeping is tricky since I'm a side sleeper...which may have aggravated the shoulder to begin with.

I'm sure I have scar tissue up in there from my rib being removed through my armpit.

Very discouraging.

I'm doing physical therapy. 

The pain goes up my neck into my jaw sometimes.

I suspect the TOS rib resection and my now frozen shoulder are connected.

I'll keep you updated.

Living well, even with TOS

I have neglected to update my blog because, honestly, I have not had TOS symptoms to manage in quite a while. TOS has not been on my mind.

I do continue to juggle some things to avoid causing flareup of neck and arm pain.

I will always sit in the center of the room, never look to my left for more than a glance, still sleep on a pancake pillow. 

I still take lots of magnesium daily, still use a few adaptive aids like the Loopo seatbelt clip, or a neck pillow for my car seat. 

But otherwise, life has been good. No big TOS complaints. 

I still have just one side resected.  The other side has not been symptomatic. 

I rarely get aching nerve pain on my resected side, usually from bad posture. 

The pain dosn't last long.
I still really prefer very gentle hugs.

I miss the facebook TOS support groups since I left fb. But I am very glad to be off fb.

I will continue to leave this page up so people can glean what they can from my experience and my kids TOS experience. 

In the future, if  I have more TOS experiences, I will share them here.

I hope you all are continuing to live well...even with TOS.

So...my daughter just had more TOS surgery

My daughter had rib resection surgery on the left side this week.
Symptoms have been increasing on her left side for the last four years.

She has restricted her arm movement and done what she could to avoid pain

and numbness for a long time. 

When her arm started going numb washing her hair, it was time to consult about surgery.
Everything went great. Transaxillary (armpit incision). 

There was lots of extra muscle from the small cervical rib. 

All of first rib and cervical rib tip removed along with excess muscle. She found a new surgeon who trained with Dr. Brantigan in Denver not far from home. 

She kept her rib bone this time.

The doctor said he "expects things should really improve for her now".
She's done physical therapy for her right side for nine weeks  to strengthen and prepare for surgery.
Now for recovery...
I'm looking forward to seeing her not have to restrict herself and be able to give bear hugs...just not to me.

I'm an old Grandma now, and I pretty much just avoid what causes flareups- pretty much.

Watching what my daughter is going through recovering from surgery...I think I will just keep living with TOS the best I can.

Gentle hugs~

TOS Update - 2017

Life pretty much is what it is, with TOS.
Both my adult children have returning symptoms, years postop.
I live a limited life, careful how I move, sit, etc.
Life goes on, one day at a time - even with TOS.
I hope my fellow TOSers are doing well.

~Gentle hugs.

Not much new TOS-wise

I have gone back to work part time, and experience flareups of TOS nervy pain I'd say a few times per week.

My discipline of doing p.t. stretches at home and sticking to an anti-inflammation diet went out the window several months ago. Therefore, more symptoms have been cropping up over the last few months, at an increasing rate.

You would think that since I've lived through these TOS issues for so long, and then found what worked to reduce my symptoms, that I'd just go back to doing what I know to do-right?!
Except it's not so easy...the discipline...doing the no-fun, painful stretches when I could curl up with a book or bake something. Sticking to the diet that had me 20+ lbs lighter than I currently am (and feeling so much better)...why not *just* go back to that?

I suppose I've been choosing the easier route, casting aside discipline, indulging myself in carbs and Netflix marathon days because it has felt mentally too stressful to stick to the highly methodical way of living that had proven helpful. Dealing with some personal life issues left me drained of the will-power to keep juggling so many things.
I just wanted to let my guard down. Relax.

That was six months ago.
Old habits are back, along with old aching pains.
TOS does not care if I need a mental break from its constant nagging.
TOS does not care if I don't want to carry its baggage anymore.
TOS is with me, and the more I try to ignore it, the louder it screams for attention.

So pay attention I must.
By deciding to get back to what I've learned works for me.
Stretching. Staying active. Enough sleep. Clean diet, low carb, less caffiene.
Giving. Finding fun and joy, having dreams, moving forward instead of parking in one place (the recliner).

Here's to a better 2016 for all my fellow TOSers...one day at a time!

Gentle hugs~

Time for a TOS life update

Hello fellow TOSers!
I have not blogged about my journey with TOS much this year.
I went back to work the beginning of 2015, and over the past six months have worked at trying to adapt the work setting to accommodate my TOS issues - to no avial.
Just recently I threw up the white flag and gave up trying...with this particular job (office work).
I am not deterred from continuing to try to find something that I can do, as I still feel I have a lot to offer and can be a productive employee.
As you all know, finding just the right job that won't aggravate TOS symptoms is quite a challenge.
Never the less, I forge ahead!

I am back in physical therapy just this week, after several months away.
I must confess, with the attention I've been paying to my job, I have totally slacked off on the exercises I'm supposed to be doing at home...and as predicted, had a huge flareup just a week ago.
Nothing motivates me to get back to staying ontop of doing my exercises and regimen that works for me to keep symptoms as low as possible like having a flareup of pain knock me on my ---!

Thoughts of applying for disability have floated through my mind.
For now, the mountain of looking for work is one I can face.
The mountain of trying to get disability I'm not prepared to climb just yet.

Gentle hugs,

~Robin