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.

Yule Run I'll Walk ~ Guest Post ~ Sabine

Several months ago, I was inspired by our fellow TOSer, Teran (previous guest post here), who ran a marathon and posted in a facebook TOS support group about her accomplishment.
What struck me, and pushed me out the door to start walking, was when Teran said, "you are not in the waiting room of life."  I'm thankful she motivated me to get moving through the TOS pain, because it led to being able to meet and walk a 5k with another fellow TOSer, Sabine.

I saw on a TOS support group that Sabine is a fellow TOSer and a runner who lives nearby. So we picked The Yule Run I'll Walk 5k to meet and walk together. I'm so glad we did!

It was a drizzly winter night for the walk, but not snowing and blowing, so we lucked out. I had more nerve pain than usual for the walk, from a combination of the chilly rain, a touch of anxiety that always makes those trapezius muscles tense up, and a new exercise I've been doing that has irritated some things. You can see we both made sure to have our TOS necks covered and warm!

The path had a pretty christmas light display, but was treacherous to walk in spots from the recent snow storm. I was glad I wore the plastic grocery bags on my feet between layers of socks, even though we laughed about how fat it made my ankles look.
As we walked, we talked a bit about our TOS issues. Sabine shared more about how she was diagnosed with compression, Paget Schroetter Syndrome, and treated for a blood clot that caused her arm to painfully swell and turn purple. She has not had surgery to address the compression, and I understand her fear very well. If you do much reading about TOS, especially on any forums, you see quite a mixed bag of results from decompression resection surgery.

We were keeping up a pretty good pace walking and talking when Sabine asked me if I ever have pain or problems from turning my head to one direction...and then we switched places as we walked because we were on each others bad side! The funny things you have in common with TOS.

It was great to discuss TOS issues and ideas for raising awareness with someone who understands because they live with it too. We commiserated about people thinking we don't look like we have a pain syndrome, and how frustrating it is to not be taken seriously.

We talked a bit about our common headaches and sitting with head forward posture as a problem that makes pain flare up.
We agreed that we both have to sit directly in front of the TV, no turning the head even slightly to the side for very long. And when we parted, she gave the gentlest of hugs.
Here we are at the finish line with our Ugly Sweater Mugs. According to Sabine's awesome sport watch, our distance was 3.20 miles, average pace 15:16, best pace 13:32, total time 48:51...not too bad considering the slippery conditions.

Had a little achy arm and hand tingling on the drive home. The morning after the 5k walk, nerves are twitching from my armpit down into my hand, increased neck and head tension, upper traps are unhappy. But it was worth it!

I highly encourage all my fellow TOSers to connect with others who are living with similar physical issues. Sharing our common bond (and the things that help us to adapt and live well-even with TOS) gives me some hope and helps me to not feel so alone on this peculiar journey.

May you also have that same hope.

Gentle hugs~

Two TOSers Meet for Lunch - Guest Post - Dianna

Recently, I had the chance to meet up with a fellow TOS-er, Dianna, who lives in my area. Very exciting! We've chatted several times since she saw the listing I posted in a 'Recommended Doctors' file in a  facebook TOSsupport group for the surgeon who treated myself and my two kids.  

Getting the chance to swap stories and commiserate with someone who really gets it, well it's just really refreshing to not have to explain TOS, or be defensive, or put on an I'm fine face about living with TOS. Being able to just be honest about the crap that living with TOS brings to your life is therapeutic, especially when some people in your life can be dismissive or don't even take the time to try to understand what you are going through because you don't look sick.

It was a great lunch. The time flew by as we talked about our TOS journeys. It was interesting to recognize the same neck rubbing, arm movements, pointing to the same places on our backs, arms/armpits, and heads that hurt. 

Lots of head nodding in understanding and agreement as we listened to each other. The only thing I'd change is cushier chairs. We were both sore the next day from driving 40 min one-way, and from sitting for almost two hours in those stiff chairs. If you live with TOS, you understand.

I'm really glad Dianna agreed to be interviewed for today's guest post. 

Dianna developed TOS without having cervical ribs. Many fellow TOSers can relate to her situation. Your life was going along pretty well, you're working hard, or playing a physically demanding sport, and pain develops in your arms, shoulder blade, hands, neck, head, chest...you can't shake it. The ache, swelling, throbbing, stabbing becomes relentless. You get referred to several different doctors who have different ideas about what your problem is, and eventually one of them tells you " you have TOS", and that becomes the beginning of a journey.

Here is a little of Dianna's TOS Journey...

1. What type(s) of TOS do you have? 

I have NTOS. (neurogenic = invoving nerves)

2. What contributed to TOS symptoms developing for you? 

Long work hours with heavy lifting, repetitive overhead work, working in unfavorable body positions. This first picture was from before TOS changed the path of my life. I was physically fit and in great shape. The prime of my life and when plans for the future looked pretty good. Little did I know how much would change.  I'll never be able to do that type of work again, regardless of if I ever recover or not. It would only put me back in the TOS cycle again. Not that we ever really get out of it. I really believe it's for life.

3. What treatment have you had?

I've had trigger point injections, three rounds of physical therapy, and two surgeries. Bilateral rib resections and anterior scalenes removed.

4. How are you now?

I still have a lot of symptoms. 

Notably, my hands turn white when raised in an overhead position, arms still tire, and still have a lot of nerve issues especially if I do any one thing for too long. Examples: sitting, standing, housework. 

This picture was taken right around the time I was first diagnosed. This one reminds me of how much the little things like holding a baby really mean. After this past weekend trying to hold our grandson my left arm feels horrible. It was worth it though. :)

5. What advice would you give someone new to TOS?

Advice I have for someone new- Talk to your doctor right away, research as much as possible, knowledge helps, be presentable to doctors. Write down all your symptoms for the doctor. Don't take no for an answer. Self advocate.

Please let Dianna know if her TOS story is helpful to you, or if you have any questions/comments for her.

I encourage my fellow TOSers to connect, talk, share, encourage, commiserate, vent- in whatever way you are able. In person is fun, via skype, chatting online, email are all great options. One thing is for sure, for those who are on this TOS journey - it sure helps to have others who understand to talk to about it.

Gentle hugs~

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.