Monday, October 27, 2014

Would I have rib resection surgery again - ??

I would seek a second opinon from someone who removes the cervical rib...especially since my daughters first rib grew back-entirely, and all wonky, and all three of us had pretty much the exact same surgery and have had symptoms return.

The specific physical therapy I've had this past year has been so helpful that I think If I'd had good p.t. 5 years ago (with someone specializing in neck trauma who knows TOS) I probably would not have had the surgery.

Because for me, with surgery-which was somewhat helpful, I also now have new complications-mostly from the missing neck muscle taken with the first rib.
So if I'd had good p.t years ago, instead of bad p.t...then maybe no, I would not have had surgery to have my first rib removed through my armpit.
To be clear, all three of us are thankful for the surgeon who did our resections. At the time, surgery was our best hope. We didn't know any different, didn't know of any options, and it did improve things, somewhat.,.for a while.

The journey with TOS goes on.

Fellow TOSers, Don't hang in there, & Gentle hugs~

Tuesday, October 21, 2014

TOS update - Exercise, Diet and Supplements...oh my!

Lately my TOS pain (nerve pull, sharp, aching, throbbing, a little twitchy, from base of my neck, down arm into hand, up neck into head) comes on sporadically, aggrivated by driving-especially when it's windy, or if I've had bad prolonged sitting posture (head forward).
The jaw/neck/head pain that I believe is partly a result of having anterior scalene muscle removed when my first rib was resected...that pain was better several weeks ago, but its been ramping back up lately. I think the cold weather is partly to blame. And I still feel like I want a kick-stand for my head by the end of most days because my head feels heavy, weaker, and unsupported on the resected side. I actually do prop my head up with my hand sometimes.

I'm down to p.t. every two weeks, for a few more visits, then I'm on my own for a bit. I'm curious to see how that is going to be. I'm hoping I can stay motivated to keep at it through the fall/winter seasons when all I really want to do is hunker down, read, or hybernate.

Here are couple new p.t. exercises I've been given to work on at home-

1. Roll exercise ball up wall with forearms, 20-40x
I don't roll up quite as high as pictured. When I first started doing this TOS symptoms started kicking in around 6 reps. After a couple weeks of doing this, I don't feel the heavy-tingly-arm ache until about 15 - 20 reps.

2. Push meduim size rubber ball against wall with back of head, turn slightly right and left while pushing.(center pic)

I've been walking 2-4 miles most every day, even on flareup days. I figure I'm going to have pain if I sit on the couch or if I go for a walk, and I've found I sometimes have less TOS pain after walking(sometimes more). I'm even ready for winter with a manual treadmill.

My diet remains pretty simple, and I DO believe losing weight and cutting sugar is helping reduce my pain levels tremendously! I  just eat real, whole foods, nothing artificial, no white flour or sugar, lots of water and green tea, and a handful of anti-inflammitory supplements morning and night.
Morning: Vit D, Vit C, Fish Oil, Tumeric, B complex, CoQ10.
Night: Magnesium Glycinate, Mag citrate/aspartate/maleate, Calcium citrate.

Other things that I've found helpful in alleviating some of my TOS pain- setting a few goals, volunteering for an organization weekly, helping others, continuing to challenge negative thinking and replace it with more positive and encouraging thoughts, getting involved in a suportive community/regular group meeting, attention to my relaxing/sitting posture, asking for what I need.

Things I am considering; injections of some sort into the back of my head/neck/upper trap on one side, and acupuncture. I looked into CBD oil, if it were not so expensive I'd give that a try. I am glad to be off all prescription meds currently, even ibuprophen. However, the pain ramps up to 'terrible' status 1-2x week, and it is moderately painful for several hours a few more days each week.

I do have some days virtually pain-free, but I'm still having enough pain that I'm wondering about going back to some type of medication. I need to be able to function and live and it's still hard for me to plan to do too much.
I sat for 1 hour for a college aptitude test recently, and half way through I was hurting and wondering how I could ever sit through a 2-3 hour class 2x week?! But I'm still signed up for Winter 2015...I won't know unless I try, right?!

So thats the current state of TOS in my life. I keep doing what I think may help, and stay open to any new ideas.

My fellow TOSers- Don't hang in there...and Gentle hugs~

Friday, October 3, 2014

Two TOSers go to Artprize

The TOS daughter and I went to artprize, a city-wide art competition where people vote on their favorite art on display through out the city at several different venues. Lots to see and lots of waking.

We both began our day excited about all the new things we were going to see, feeling energised and prepared for the day ahead.

As usual, we thought ahead about what to wear, light layers-nothing heavy that would cause symptoms to flare.

Walking around with hands in pockets is pretty common for both of us. We noted to each other partway through the day that our necks hurt. We had both been putting our hands in our coat pockets to avoid walking with them hanging down-which surely causes neck and upper trapezius tension. But the weight of our hands in our coat pockets pulled our coats down on our necks and had the same result-neck pain.

TOS daughter said she tried walking with her hands in her pants pockets, but that just made her have to pull her pants up more-which caused arm and neck strain, so it was a no-win situation with the pockets today.

(photo of the breathtaking exhibit Intersections, by artist Anila Quayyum Agha.)

One problem for TOSers with being out and about when there are alot of people is that there are social requirements-like holding the door open for the people behind you. Many of the artprize venue doors in downtown Grand Rapids are very heavy and difficult to pull open. I try to use my foot to help open and to hold doors as much as possible.
It wound up being easier to just open the door and let people entering behind us to go ahead instead of awkwardly holding the door with one arm from behind while still walking forward...really hard on a TOSer arm.

TOS daughter said she was perfectly fine with the fact that the shoes she wore to walk in all day made her feet hurt, because her aching feet distracted her from the pain in her arms and neck.

Also, several art pieces were hung up very high. TOS daughter wanted to lay on the floor to look at some intricate ceiling detail. We both had to just stop looking up at things because we were going to both wind up frozen, unable to move, looking like one of the exhibits! It's funny to us that we can commiserate about the same quirky, TOS way of handing things; we get it, but nobody else would.

It was a rainy, windy, and chilly day for walking around the city all day. The weather alone was enough to make muscles tense up and cause TOS pain to flare; you know how TOSers are living barometers! We both forged ahead through moderate headaches all day. 

Though we had our TOS things to be mindful of through out the day, it was an AWESOME day!

SO much gorgeous, lovely, fun, thoughtful, heartbreaking, beautiful stuff to see. My personal favorite piece was a glass mosaic, Into the Autumn Woods, by artist Sandra Bryant. Wow.

I was captivated by artist Christopher Capozziello, and the photo exhibit of his brother who has cerebral pasly. Christopher asks some pretty raw questions that people who live with, or who watch loved ones live with painful physical conditions ask. "I want answers. I want explanations for why some suffer and others do not." The last frame of his exhibit is of his brother hugging their mother, with a thought about how he has personally learned how to live by watching his brothers life. 

Another touching piece, by artist Eric Staib, is a painting that depicts the downward spiral of questioning, suffering, and some of the very real thoughts and emotions of those who suffer.

I kept thinking today how the world and life is just like the art we saw all day; sometimes so incredibly
moving and beautiful, and sometimes so horribly sad and dark.

If you have TOS, or a related physical challenge, I encourage you to get out and take in life. Even though you have TOS as a thing to manage, don't miss out...go see and do and live!

We know it's not easy, living with TOS pain can be a depressing hassle. Even with all the things we TOSers have to stay mindful of just to function, we still can, and should, live well...even with TOS.

Gentle hugs~

Friday, September 26, 2014

My Physical Therapist Said - Part 8

How often have you thought you would love to detach one or both of your arms because they hurt so much you just can't stand it any more?

I told my PT about having increased arm pain at a recent appoitment.
I mentined that my daughter and I think it would be great to work on getting a patent for 'the detachable arm.' But I also realise it is quite possible to detach your arm and still feel the arm pain.

My physical therapist said, "Now you're getting into the concepts of pain and the brain in Explain Pain!"
I told him I remembered an episode of House where a man felt excruciating pain in his amputated arm, and the good doctor fixed it by sticking both arms in a box with a miror so he could see both hands clench his fist and release. The brain got the message and his pain was relieved. Pretty cool.

There are elements of this that may apply to those of us living with TOS.
We get set up in a cycle of pain, expecting pain, being used to the pain.
How much of that is our brain being addicted to giving us pain signals, and how much is actual physical distress? The answer to that is very indivdual, each TOSer has a variation of things going on with their symptoms. But I think it is worth thinking about how much of the pain we attribute to TOS is actually from a physical cause, and how much of our 'TOS pain' may be of another nature; ie, our brain controlling the show and overreacting.
It's something to think about.

Don't hang in there & gentle hugs~

Wednesday, September 17, 2014

Big TOS Medical word of the Day-Etilogical

Etilogical =

a. The study of causes or origins.
b. The branch of medicine that deals with the causes or origins of disease.
a. Assignment of a cause, an origin, or a reason for something.
b. The cause or origin of a disease or disorder as determined by medical diagnosis.

Wednesday, September 10, 2014

My Physical Therapist Says - Part 7

I went to a recent physical therapy appointment feeling a bit discouraged, dealing with an arm pain flareup.
Here's part of the pep-talk my physical therapist gave me-

"This is just the ebb and flow of life. As you work to get stronger, things are going to happen to challenge you; its ok. Hang in there."

*Insert here the sound of a needle scratching across a vinyl record, which is what I heard at that moment in my head.

I told PT that 'hang in there' is possibly the worst thing you can say to encourage someone with Thoracic Outlet Syndrome.
Think about it- arms, neck, pain, hanging..."hang in there"?!
We have commiserated about this on the TOS facebook support group; it's not a great admonition for someone living with TOS.

As I was leaving pt that day, I hear from across the room- "...and Robin, don't hang in there."

My fellow TOSers will understand when I say this; that may be one of the most thoughtful things anyones ever said to encourage me.

To all my fellow TOSers-Don't hang in there & Gentle Hugs~

Friday, August 29, 2014

Big TOS Medical Word of the Day- Costoclavicular


: of or relating to a ligament connecting the costal cartilage of the first rib with the clavicle