Sunday, August 17, 2014

Seat design causing neck strain and health issues!

Take a look at these seats and tell me- why are they all concave and curved forward at the top?!
I understand 'safety' is the reason given for the design, but try having TOS and have to sit in one of these seats for any length of find out pretty fast that your pain is about to flareup!


Topping the list of seats that are terrible for TOSers, is the car seat. There has been nothing worse for my pain flareups than having to ride in someone elses car with a head restraint/headrest that pitches forward.
This paper addresses some important issues in car seat design, (Link)Automobile headrests extending too far forward with solutions.
A quote from that paper- "In most cars, the contour of the seat backs do not adequately match the contour of the drivers back and the headrests are too far forward."
As this Forbes article confirms, there are alot of people unhappy with the straing on their neck caused by the car seat head rest.
You may write and express how car seat design is affecting your health (a cause of TOS pain flareup) to:
U.S. Dept of Transportation
National Highway Traffic Safety Administration

A few ideas for TOSers to adapt their seat:
As the paper suggests, with warning, you may remove and turn your head rest around.
I have to do this or I cannot drive. I may be taking a whiplash injury risk, but leaving the headrest in the curved forward position is not an option for me.
 (Maybe this is not as much of an issue for those living with TOS who are taller?)

Other options to adapt include:

Happy driving fellow TOSers, gentle hugs~

Wednesday, August 13, 2014

Guest Post - Tara

I asked Tara to share her TOS story with us because I’ve appreciated her hard won knowledge and encouragement (in the TOS facebook Support Group), and I’m sure you will too.

I asked Tara to answer the following questions for us:

1. How did you come to learn you have TOS?
2. What treatments have you tried?
3. What is helpful to you now in living with TOS?

I just had to put this part of Tara’s response here at the beginning-it is so important I wanted you to catch it right away…

“Try to avoid toxic people and encounters whenever possible and learn who your real friends are. You will need them. Our lives may feel diminished, but learn what you still have and embrace it.”
~ ~ ~
“It appears I was born with all the elements that predisposed me to developing Thoracic Outlet Syndrome.
I have two cervical ribs as well as elongated C-7 transverse processes on both sides. The only indicators I had growing up were heaviness and loss of strength in my arms when doing overhead activities like swimming or arranging my hair or fussing with my blankets in bed.

Ironically, I was exceptionally strong, easily doing necessary things like chopping wood and hauling water from the spring near our wilderness home. I don't recall suffering any ill effects from those "arms down" activities. Straight and strong, I didn't notice my posture changing until I was about sixty years old. By then I had gone from slim and buxom to plump and heavy bosomed. My body had gradually curled forward from the extra weight.

Everything came crashing in when I was working with a rather large three-year-old boy, who had to be contained over an eight hour shift. He jerked and pulled and twisted my arms the entire day, while trying to escape--wanting to harm other youngsters in the room. At the end of the day, my arms felt as if they were dislocated--weak and painful. Sleep became nearly impossible, because almost any position I lay in, my hands would lose circulation and start throbbing. I reported the injury to my supervisor.

I was diagnosed with a shoulder impingement and sent to physical therapy. Unfortunately, the type of therapy I was given was the worst type to be used for TOS. My work-outs included exercises with weights, therabands, and an arm bicycle. While the impingement improved, a deeper pain began to develop, sending shooting pains down my arms along with burning, tingling, and numbness into my hands.

When the sports medicine specialist I was seeing declared himself stumped, I told him about an EMG I'd had a few years earlier which had shown nerve irritability. The neurologist had told me about "Droopy Shoulder Syndrome" and said I had the body type for it. Looking up the term on Google, I'd learned of TOS.
My specialist snapped his fingers and said, "That's it!" He ordered a new EMG, and an MRA, then referred me to a local surgeon whose wife has TOS. The tests showed compressed veins, and True Neurogenic TOS was diagnosed. I was rushed into surgery.

Unfortunately, the surgeon I was referred to has a history of being very experimental. The first doctor I saw was very kind and seemed to possess good surgical skills. But his senior partner, who stood in to help, decided to try a different surgical method. The records were falsified to say the surgery had been done as I was told it would. A year later I was back for a second surgery on the left, as I had gone bi-lateral. The second surgery was disastrous! From all appearances the senior partner left early and turned me over to his students. Falsified records said, "complete rib removal and scalenectomy".

Nothing resolved correctly and it took two more years to find and be treated by a TOS specialist, Dr. Dean Donahue at Massachusetts General Hospital in Boston. Dr. Donahue's special contrast CT scan, imaged my cervical ribs and the terrible surgical techniques used on me previously.
Since our first meeting in 2010, Dr. Donahue has performed clean-up surgery on both sides and identified the combination of issues involved. I have "true neurogenic TOS" with classic Gilliatt-Sumner Hand--nerve damage and wasting muscle at the thumb base. The elongated C-7 transverse processes sent fibrous bands into the scalene triangles, where adhesions clamped them to the scalenus minimus (small, extra scalenes )-trapping the arteries between them.

With just chunks of both first ribs removed, the prior incomplete surgeries left the periosteum/bone casing's cut ends drifting. Those casings caused a healing response from my body and new bone regenerated in them-like it would from a fracture. The anterior scalenes had also been cut and left drifting until they met and attached to those loose bone casings. From that response, a sling formed across my brachial plexus on each side and then adhered to each pleura, creating new compression. The repair surgeries were lengthy and difficult--the one on the left was not enough to reverse all the nerve damage. I am left with weakness and loss of function in that hand.

The right side was especially bad, with the brachial plexus wrapped twice in thick slabs of scar tissue. Despite the surgery taking 4 1/2 hours, the damage has been significantly reversed and strength is returning to the hand.

Workman's comp has dogged my every step, with adjusters stalling my medications and procedures. In spite of that, I have tried PT, lidocaine injections, Botox, radio-frequency ablations, intermuscle stimulation (IMS), aka dry needling and numerous medications. The two most beneficial treatments have come from my manual physical therapist. He has pioneered some gentle stretching methods that are especially easy on TOS patients. He also learned manual lymph drainage (MLD) and dry needling therapy (IMS) which when used in conjunction work miracles on my trapped lymph build-up.

Living with TOS is especially discouraging, knowing it is for life and will not be cured. We need to develop arsenals of pain-relief methods--each will be as individualized as the people developing them. Many pharmaceutical medications have been tried, but nothing has proven especially useful to me. Things like Cymbalta and Lyrica are caustic to my gut and I have had to eliminate them from the list. At present, I use Wellbutrin and flexeril in conjunction with curcumin/turmeric and several vitamins and supplements. They seem to take the edge off daily pain. Soma helps when I can't sleep.

Distractions are very important and I use them frequently. Books, movies and music all help me to switch focus from pain. Travel in general is pleasant, but my very favorite is road-tripping! My tens unit and infra-red lamp are soothing, frequent companions at home and on the road.
I try not to dwell on my afflictions or tell my lengthy tale to everyone I meet. Just accepting that we have TOS can help us move forward.

Getting the best medical help you can afford is primary, but you may have to hire and fire several doctors before you find someone truly helpful. A TOS specialist can be beneficial if s/he has more in his/her lexicon than surgery. Pain specialists can also help, if you are willing to be experimental. You may find that your best and most consistent help comes from your trusted GP.
Devise coping methods that help get you through and learn what you can do to normalize your situation as much as possible.
Learn to respect your new limits and ask for help.”
~ ~ ~
Thanks for sharing with us Tara. 
If you have any questions or encouragement for Tara, you may contact her here.

Gentle hugs~

Friday, August 8, 2014

How to Attack Life's Challenge with Grace

I've been trying to do just what Brendon talks about in this video for several months now...attack my TOS issues head on, and from every possible angle; challenging negative thought patterns, supplements, physical therapy, diet, even emotional and spiritual pieces of the puzzle.
Recently, I've been a bit discouraged.
I think I'm doing better, then pain ramps up and I feel like one step forward, two steps back. 
It seems a bit divinely providential that I ran across this video today.

I needed to be reminded of the necessary balance between fighting TOS, and being at peace with it while I'm trying to change some things.
Like Brendon says about his 'War and Peace Strategy' in this video-"If you've got a challenge in your life, you've gotta go to war at it, and you have to have peace about it. Major challenges in our life demand multiple areas of attack. You're so overwhelmed with the suffering, the challenges- you've gotta start overwhelming those things with the number of areas you're hittin' that baby. As you're working your best towards changing it (not approve of it or settle with it) have peace, accept it with no negative attachment. It's ok as it is." 

That last line is tough, so tough for me.
I think he's right.
I think acceptance and peace may be the key to living well with pain and challenges, but I'm not there just yet.
I'll keep workin' on it.

Gentle hugs~

Get Back To Me When - A TOS Poem

Pain increased today,
glass in my veins
pulsing fire
rusty knife in my back
sending jolts,
with every breath,
every move.
A well-meaning person
tried to help, said-
it's o.k.
just hang in there.
dark thoughts
crowded my mind.
You tell me
things will get better?
I've clung to that hope
for years
Living at the mercy
of this pain
that comes when it wishes
against my will
forcing itself on me
and over,
and over.
and you say, no worries?!
Give me a break.
After you
have spent years
fighting against
this particular monster,
you can get back to me
with your nice platitudes.

~ Robin Wahl

Sunday, August 3, 2014

My Physical Therapist Says...Part 6

"Your body wants to move, its good for you to move. Garden, be as active as you can - without blowing up symptoms." 

I asked why when I do this-(arm up and down, painting motion) does my ear hurt?  Response-"because the pain is not coming from your ear its coming from your neck muscles."

"They've done MRI of shoulders with torn rotator cuffs on people who have full function. Others  who've been told they have torn rotator cuff but normal MRI experience pain and limitation. Being given a medical dx can contribute mentally to pain."

"There will always be some people invested in their negativity and pain. But you can chose to focus on the positive and keep moving gradually forward."

I asked, if I lean into the pain, tilt head toward pain, fold arm up, is that a bad habit? Response," it takes the tension off the muscle and nerve, so temporarily, no thats not bad." (note-temporarily).

Gentle hugs~

Friday, July 25, 2014

A Reluctant TOS Prayer

I stopped referencing 'God' or spiritual things after my first few posts because I want everyone to feel welcome here. 
That being said, today I want to share with my fellow TOSers something that has become a great help to me in living with TOS. 

After hearing about my continuing struggle with TOS, someone challenged me to spend some time with the well-known Serenity Prayer
Initially, I had to approach it as more of an inspirational mantra, because the very first word of the prayer (God) tripped me up.
Getting past the idea of asking for something from a 'God' I am not so sure is A. concerned about my pain, or B. trustworthy, is hard for me. So I skipped the first word for a while and daily read the prayer, meditating on its meaning for my life.  Does it ever apply to living with TOS!

Everyone who lives with an ongoing pain issue, like TOS, faces things that are not in their control, that they cannot change. 
Your body has betrayed you and gone haywire. 
You endure sleepless nights and foggy days, restless with pain, and wonder what the heck you did to deserve this. 
You try everything you know hoping for pain relief; consult medical and alternative practitioners, tests, surgery, therapy, shots, medications, gadgets, lotions-the list could go on, and still the pain remains. 
It's frankly been infuriating to me that I can't just rip out the cause of the pain and get on with life. 

Thoracic Outlet Syndrome backed me into a corner. There was nowhere to go to get away from the pain, which tapped into my stubborn streak. I pretty much unplugged from faith and life over the last few years. I've used pain as an excuse to not do or go or participate. 
The more I've withdrawn, the more the pain has intensified. I ate to stuff my feelings. Pity-parties with chocolate, donuts, cookies in-hand were happening daily. I gained a lot of weight, which exacerbated TOS symptoms. Add in some prescription medications and their unpleasant side effects and I was a depressed mess.

My daily thoughts were about how angry and resentful I was about being stuck in the grip of this insidious pain. My faith turned into questions and doubts. 
Watching TOS affect the lives of my kids has been heart breaking. Three of us dealing with TOS in one family?! It seemed to me 'God' must be cruel, unreliable, and cold. 
New symptoms on top of the usual TOS appeared; ear, head, and jaw pain. Instead of driving me toward humility and faith, the pain became a wall between me and anything that might touch my spirit. 
Thoracic Outlet Syndrome weighed down my life in every way. 
I'd become a different person, someone I didn't like. That is the state I was in when a very wise woman handed me a copy of this prayer.

After spending some time sitting with the prayer on my lap, reading and thinking, it became clear to me I was at a crossroad. I have been in desperate need of some "serenity, to accept the things I cannot change". 
Would I choose to continue on my life journey with TOS and take the path that leads to my life being taken over by this monster, or would I choose to go another direction, one that requires engaging in my life again? Would I choose "courage, to change the things that I can"

A thought occurred to me, that just maybe that bit of scripture that says"...the kingdom of God is within you..." is true concerning the things in this prayer. Serenity, courage, and wisdom are already inside me and I simply need to summon them.

Lately, I've been including the first word of the prayer. That word comes with a lot of questions, and honesty about my disappointments. Over time, my faith is being renewed.  It's looking a lot different than it used to back when I thought my requests would be fulfilled in my favor (according to 'Gods' will) as long as I asked fervently enough.

I'm learning to be ok with the mystery of 'God', and with admitting I can't fix my broken self with myself. However, I can tap into the reservoir of courage and be better, change the things that I'm able to change.

I only see and understand this life in part, and I need discernment to know when to relax and not try so hard..."wisdom, to know the difference".
It's all a work in progress, a journey. But the view on this part of the path is improving, hopeful, even healing.

I hope this well-known prayer may be a source of encouragement for my fellow TOSers as you each choose, bit by bit, one day at a time, how you will live with this TOS companion.
You all inspire courage in me. 
I wish I could take the pain and fix it, for all of us. 
But just maybe this struggle is making us into people with resilience and fortitude that this world desperately needs.

Gentle hugs~

Tuesday, July 22, 2014

Direct Consumer Access to Physical Therapy

"Legislation has been signed into law allowing patients in Michigan to go directly to a physical therapist (PT) for evaluation and treatment without a physician’s referral. The legislative victory now means that all 50 states and the District of Columbia allow for some form of direct access to PTs for evaluation and treatment."