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.

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.

My TOS Diet days 9, 10 and 11

For the coffee quitting progress, day nine, I had one cup of half caff in the morning, some green tea during the day, and more water. Day 10, just green tea in the morning, a cup of black tea in the afternoon-but no coffee. Day eleven is the same, green tea only so far, and more water. Feeling tired, but I believe that will pass and I hope to be more clear, less headachey, and feel better overall. I'm trying out these organic green teas I found at my local health food store, also Stinging Nettle Tea, which I've read improves inflammation. So far, they all taste like grass water to me. I also drink Lipton citrus green tea, but hope to find a better choice that is organic, less chance of pesticides.

I've pretty much de-junked the cupboards of foods not on my tos diet, so when I get to feeling the itch to snack, I open the cupboard door and there are the nuts, almond butter, exekiel bread, unsweetened applesauce cups, dates, triscuits, almond milk and unsweetened whole grain cereals, raisins, natural dried fruit. Bananas and oranges on the counter.

When I open the fridge, I see apples-malic acid in apples is supposed to reduce inflammation. Also I see almond milk-I blend it fresh in my blender, but you can find it packaged with minimal additives and sugar.

Lots of veggies in there too. I found a mini-food processor at the thrift store and it has been just great to use that to chop stuff, saves my aching arms for sure!

I've continued the smoothies, but backed off from one quart to half that, or more if I want. The bloating is much improved. Pictured here is My TOS Army Green Smoothie: red grapes, spinach, flax, avocado, apple, pineapple juice.

Two nights ago supper was bakes chicken thighs, sweet potaotes and green beans-frozen. Last night supper was chopped salad, my own dressing made with olive oil, balsamic vinegar, raw honey, salt, pepper. Also salmon patties made with 4 eggs, 2 cans salmon, chopped onion and celery, fried in olive oil, salt n pepper. Delish.  

I also made a totally anti-inflammation legal fruit crisp. Ingredients: Mixed fruit/3 chopped apples, 1 can slices peaches(in real juice, drained), 1 cup mixed frozen berries-in a 8x8 baking pan. Topping: 3/4 c. gluten free organic oats ground into flour, 1 c unsweetened coconut shreds, 1 c chopped nuts-walnuts, pecans, 1/2 stick real butter. Drizzle fruit with raw honey or sprinkle coconut sugar, mix topping ingredients together, sprinkle topping over fruit, bake uncovered 350 30-45 min. Yum!

Breakfast has been tea, Ezekiel bread toast, or Ezekiel sprouted grain cereal, or whole wheat squares cereal with raw honey and unsweetened almond milk. That, or eggs and toast, usually a banana too.

I'm including a picture of the chocolate I indulge in every night. Two squares, ok, sometimes four, but it has to be at least 70% dark chocolate for it to be considered anti-inflammitory, according to The Diet for a Pain Free Life book.

Which is fine by me because dark chocolate is awesome.

 Today's smoothie is My TOS pineapple enzyme anti-inflam shake: Fresh or frozen pineapple-not canned. Almond milk, raw honey, ground flax, apple, banana, orange.  For those of you who do not have a high powered blender, I started making smoothies with an inexpensive 'Bullet' blender years ago, so it can be done. Investing in a good blender has been a smart choice though and I highly recommend it.  Thats the tos diet update. Gentle hugs~

 

My TOS Diet Plan ~ Pre-diet

The last few days I've been gearing up to start the diet.
I have used The Green Smoothies Diet for a couple years, love it.
I just finished reading The Diet for a Pain Free Life yesterday afternoon. Overall, good information. I don't agree with a couple things, like using sugar substitutes-I believe fake chemicals have to be irritating and inflammation causing, so I will be using raw honey instead.
I believe in the healing properties of raw honey. My husband had a bad burn and I applied raw honey because I read an article in Mother Earth News that honey heals burns--and the next day the burn was gone!

As I mentioned, I will be gleaning from these books, not necessarily following every word. I'm also trying a few tips I've gleaned off Pinterest for my anti pain & inflammation diet.
I'm throwing it all together to make My TOS Diet.

First order of business in putting together my diet plan was to decide if I should stop my morning habit of one cup of strong coffee. (That's my sister and her family on the mug). I posted this question to my TOS facebook friends, and with their comments in mind, (and my bowel dependency) I've decided to go with caffeinated green tea in the morning (for the bowels), and decaf/herbal tea in the afternoons, with decaf coffee as an occasional treat. I won't know if cutting coffee helps unless I try, right?!

I made a blender full of smoothie with pain-reducing fruits: blueberries, ground flax seed, spinach, raw honey, apple, orange, strawberries. It made 4 pints, I've had one per day, gearing up for my one quart per day smoothie...or one large salad. Gotta get those anti-inflammatory greens in! I prefer smoothies because all the chopping for salads can be flare-inducing.

Next thing was to go grocery shopping. Not a small task in the crummy Midwest snowy weather we're having here. But my husband drove, and pushed the cart, and I pushed on the back of my head...seriously.
I was having a nerve pain flare, up my neck into back of my head. So I walked around the store pushing on the back of my head feeling really odd.
We loaded up on anti-inflammatory foods: nuts, fresh, frozen, non-sugar/salt canned fruits and veggies, fish, dark chocolate, ginger.  We walked right by the aisle with the chips, pop, cookies.
We're going to use Ezekiel bread- sprouted whole grain super healthy (& expensive! I need to learn to make it). And yes, I said we. The hubs decided he wants to do this with me to see if he can loose a few pounds.

I read that Gin-soaked golden raisins help with inflammatory pain, so I got supplies for that experiment.
I guess they're supposed to soak for a week or two before you eat the recommended 8-10 raisins per day.

Tomorrow's the big first day. We just had cheeseburgers for lunch, a last hurrah.
I pointed out we can still have burgers on the anti-inflammation diet, salmon or turkey, on whole wheat.
Which reminds me, The Diet for a Pain Free Life cuts out beef and pork because it purports those meats cause inflammatory response, so we will be cutting that out. However, we will be eating all-natural, lean, local venison. A tweak in the diet that may not work for everyone.

One final thing today- I'm an average size lady, I was up twenty pounds a year ago and could stand to loose another 10-15, but I have zero aspirations of 'skinny' or single digit clothing sizes. Zero. This is not a weight-loss diet for me. Being healthy and free of pain is my only goal, and if I happen to loose a couple pounds, then ok, but if I don't loose weight yet feel less pain-well then hallelujah! (I will say, not carrying the 20 lbs I lost last year has been helpful.)

So I will try to report every other day on how things are going.
Interesting time to be starting this diet, being in the middle of another unexpected nerve pain flareup.

I love to eat cookies or chocolate to self-soothe when I'm really hurting.
I will have to eat grapes and walnuts instead. Drink more water.
I sure hope this diet helps.

They're baa-aack!?

One member in our family of three with TOS - the daughter- has been experiencing recurrence of pain. We obtained updated xray and MRI recently, and requested a copy on disk to take home.
Our mouths dropped open when we saw what looks to us to be a fully formed, regrown first rib...which was *removed* years ago.
*We are not radiologists, with no experience reading these test images....but it sure looks like the rib grew back.
We are flabbergasted.

**Update--We got a copy of the xray that was done immediately after rib resection and compared it to the new xray, and sure enough...the whole rib is now present where it was once just a stump.  Not cool.
I'll post the pics after our second opinion consult.

We are told it takes forever to get into the specialist we are waiting to hear back from for a second opinion on the situation. When we know more, we will let you all know about the next step in this TOS journey.

Some interesting information I've run across online about rib regrowth...

http://www.drbrantigan.com/physician/multidetector.htm
"... the first rib has regrown..."  (shown in CT scan pictures).

From this article- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1849872/
"...patients with recurrent TOS symptoms for removal of rib remnants and regenerated fibrocartilage..."

"The primary technical factor involved in recurrence seems to be incomplete extirpation of the rib during the first procedure. If a rib remnant is left (as most surgeons outside of our group do), osteocytes, chondrocytes, and fibrocytes grow from the end of the bone and produce fibrocartilage and regenerated bone that compress the nerves."  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1849872/

TOS ~ Life XIX

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.

Flareup's are so inconvenient

I recently returned home from traveling over a thousand miles to see my grandsons, sixteen months and newborn. It wound up being an extended trip with lots to do. Unfortunately, I did not listen to the TOS advice I give to others, nor to the signals my own body was giving me.

I over did it.
There was so much to do, much that I do not normally attempt.
Lifting, carrying, bending, reaching, playing.
I just couldn't resist. It was all such fun!

Until that darn pokey, pinchey, pulling, needley, burning, jabbing, searing pain from my ear and neck down through my traps and into my arm. It got really bad.

A doggone flare up.

Just when I needed to be able to make the most of what little time I get with my precious little guys who are growing up so far away, that dreaded irritation and pain surged intolerably.

I had to employ every trick and tool I've learned to fend off a plunging depression.
I admit, the pain pushed me to an emotional edge. I vented a bit, with tears.
Pain has a way of purging the truth out of you like nothing else can.

I was sad, knowing I needed to take it down a notch and slow down, even though I didn't want to.
But I also knew I would be no good at all for anyone if I didn't take care of myself and pay attention to what my body was telling me.
I heated up my microwave rice pack, dropped in a few drops of lavender essential oil, took muscle relaxer and pain pills, got out my mp3 player and listened to some Ease Pain sessions, then some light piano music.
I had to make myself rest.
I proposed my problem to the facebook TOS group. The responses were wonderfully warm, supportive and helpful. Exactly what I needed, a word from people who understand because they've been there.
"Get down on the floor. Let the kids crawl in your lap, no lifting, do the best you can and let the rest go."

That was wise advise indeed for this TOSer.  I tried to heed the advice, though it was really hard for this new grandma to always comply.

The Uncertainty of TOS

Never knowing...
when or how it will begin, again
with the slightest move
just the wrong way
or from doing too much
carrying a heavy bag
wearing a heavy coat
and the ache begins
a tugging in my bones sort of pain
slight at first
but the familiar sign
of things to come
a cascade of effects
that begins to unravel
from a simple sneeze
or a wobble when walking on ice
pressure from a seatbelt
a change in the weather
unconsciously sleeping in a bad position
now the throbbing has returned
I feel my spirits sink
the pain wraps around my mind
surges through my neck
my jaw, my arm, my head, my back
Pain changes my plans
for the day, maybe for weeks
now, the struggle is not so much with pain
as it is with the emotions it brings up...
unable, weak, dependant
victim, angry, burdened, defeated.
Stops me in my tracks
Yesterday, and the day before
no one would have guessed
Odd how you can learn
to live with a level of pain and dysfunction
and not really notice it
Today, suddenly, out of the blue
I am laid low once again
back in my chair
back on pain meds
back to blaming myself for this fluke
for not doing enough therapy
for not being careful enough
like it is my fault
that my body is this way
out of my total control
with a mind of its own
I have no choice, backed into this corner
so I slow down
I breathe
there is no 'doing' now, only being
getting through it
enduring until another day
I remember somthing I once heard
that the rings of a tree show signs of struggle
in years of drought or stress
and that growth comes after
In the stillness now, I sense something new
even in the midst of the pain
courage, depth, compassion
resilience, insight, dignity, wisdom
I ask myself the question-
who would I have been, without the pain?
shallow, vain, hurried
callous, unseeing, impatient, unaware

In that understanding, lies the treasure.

30 things meme from invisibleillnessweek.com

Thankyou to invisibleillnessweek.com for making this available for those of us who deal with ongoing physical issues to participate in.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Thoracic Outlet Syndrome (TOS).

2. I was diagnosed with it in the year:2008?

3. But I've had symptoms since:1987

4. The biggest adjustment I’ve had to make is: Living with uncertainty; never knowing from one minute or one day to the next if symptoms may flare up.

5. Most people assume: That I am fine.

6. The hardest part about mornings are:Medication side effects-constipation, jitters, headaches, etc.

7. My favorite medical TV show is: Dr. OZ

8. A gadget I couldn’t live without is: Microwave lavender scented rice heat bag.

9. The hardest part about nights are:Sleeping comfortably.

10. Each day I take 5 pills and supplements.

11. Regarding alternative treatments I: believe in doing all you possibly can to help yourself, so I have tried many with mixed results.

12. If I had to choose between an invisible illness or visible I would choose:Invisible-though I'm not sure why.

13. Regarding working and career:I think about this daily-what could I possibly do for work??

14. People would be surprised to know:How much pain I put up with.

15. The hardest thing to accept about my new reality has been:Giving up on some dreams.

16. Something I never thought I could do with my illness that I did was:mow my lawn (riding mower).

17. The commercials about my illness:There aren't any.

18. Something I really miss doing since I was diagnosed is:Carrying a cute purse on my shoulder.

19. It was really hard to have to give up:My job doing home care for the elderly .

20. A new hobby I have taken up since my diagnosis is:Blogging.

21. If I could have one day of feeling normal again I would:Cry, because I wouldn't want it to end.

22. My illness has taught me:Resilience.

23. Want to know a secret? One thing people say that gets under my skin is:"Well, you LOOK good."

24. But I love it when people:Are respectful and gentle.

25. My favorite motto, scripture, quote that gets me through tough times is: "There's no use complainin', it won't change anything!" -Viv

26. When someone is diagnosed I’d like to tell them: Read all you can, network; educating yourself and understanding your condition is so helpful.

27. Something that has surprised me about living with an illness is:The limited options for help.

28. The nicest thing someone did for me when I wasn’t feeling well was:Feed me jello after resection surgery when I didn't want to move my arm.

29. I’m involved with Invisible Illness Week because:It affects my life and the lives of people I care about.

30. The fact that you read this list makes me feel:Glad that I could bring some awareness to TOS

TOS Thankfulness

Things this TOSer is thankful for...

1. Family members who try to be understanding
2. Moments of time that I am relatively pain free
3. Suport groups of fellow TOSers who also understand
4. Pain meds and supplements
5. Books and internet- knowledge is power
6. Doctors who are skilled, willing and able to treat TOS
7. Little things that make nice nicer for a TOSer-hot packs, seatbelt clips, etc.
8. My comfy chair
9. Enough grace for each new day
10. Relaxing music
11. Sleep
12. Cold water and hot tea
13. My dog curled up next to me
14. A strong enough mind to carry on
15.  Mostly I'm back to number 1...I'm thankful for love.

Also, I hear there will be a Black Friday super deal on LooPo Seat belt tension adjusters.

Interview-The son

I interviewed my son recently about how he continues to live with TOS as part of his life.

It has been eight years since his one-sided rib resection. He was 14 at the time of resection, and the one who blazed the TOS trail for my daughter and myself.  I hope you will find some hope in the experiences shared here, and helpful information, even if it gives you more questions to ask.

Now for the interview... 

So, son, how are you feeling lately? Do you feel TOS is affecting your life now, and if so, how?

"I feel good. I don't pursue certain jobs-like lifting.  I feel like I was told things to avoid (postop) but because I was young and in shape I have ignored most things. Now (eight years later) it's catching up with me some and I wish I had listened more.  I'm finding I'm having problems with the same shoulder,(the same side I had resected). I think the pain is related to thoracic outlet -I think. It feels like it."

Ever have problems or pain with the other arm?

"To a much lesser extent, I do. I still get some of the same pain I had before surgery in certain scenarios; it's a much lesser degree- bearable.

Is your armpit numb where they took the rib (transaxillary)?

"The underside of my arm is numb, the pit is not. The feeling is 'different' but not numb, hard to describe. It's lumpy."

Would you have surgery again?

"If the pain and ache got to the point same as before-I would, yes. The doctor said we (he and his sister) would probably need surgery again on same side eventually,(because they were so young when they had the resection)."

(Ugh. I had forgotten about that).

Does anything aggravate your arm, neck, shoulder TOS pain to start up lately?

"Oh, standing in line, walking around with my arms hanging down aggravate it.  I've become accustomed to the feeling of some amount of TOS pain, so I don't notice it half the time."

Anything else that continues to be a problem for you with TOS and the cervical ribs?

"Well, no one is allowed to massage my neck-not even my wife. It's tender and does not feel good-hurts to touch those muscles at the base of my neck.
Mainly I just feel limited by TOS because I can't pursue any job lifting. I expect fully that someday I won't be able to golf, etc.  If this keeps up, when I'm grandpa's age I won't be going golfing. Maybe I could if I took better care of my arm.  I don't know if it'll matter."

Any other pains or issues you have now that you associate with TOS?

"My arm aches and tingles if I ignore it a long time."


What advice would you give someone new to TOS?

"Get surgery done-sooner rather than later. My experience has been positive with surgery. 
The night after surgery was the worst of my life; not pain in my arm but from puking, anesthesia and feeling nauseous and tired and crappy. At home (postop) I was drugged enough (the first couple weeks) I didn't feel alot. I recovered extremely quickly.
Remember?... I went to football camp!

Yes, (cringe) I remember.

*Stay tuned for Interview - the daughter, coming soon.

Another day in the life-with TOS

Yesterday was a busy one, trying to keep up with the grass growing and the yard mowing.
Today I am paying dearly for over-using my arms.
The left aches so much, like my right one used to all the time.
That pain pushed me to the medicine cabinet to find a pain pill to pop in hope of temporary relief.
Yea, today it's that all too familiar down the center of my arm ache.
Like the constant pull of a nerve, from the base of my neck, all down my arm, with a bit of a throb added to it.

I've heard that a classic symptom of a heart attack is left-arm pain that radiates into your back.
Well if ever I have a heart attack, I'll never know it since I have this TOS arm pain- which feels exactly like that!

I'll start with Ibuprophen, the max recommended by my Dr-800 mg.
That will hopefully take the edge off enough to function for a while today.
I have errands to run, not far to drive, thankfully.
I can manage with one good arm.

I try to take my time as I go about my day, but what I really want is to get back to the safety of my own house, my chair, where I can sit and not worry about people looking at my face and wondering whats the matter with me.

Pain is a bitch.
Nag nag nag.
It's hard to even think straight after a while, with pain constantly tugging on you like a needy little kid..."mom...mom...mom...mom...mom...mom..."
Until you want to scream "What?!"
But it wouldn't matter, the pain would keep on nagging you just the same.

Pain is so draining, wearing you down, the ache, throb, worry, hurt, fear, the struggle to hold yourself back from doing things you know will make you hurt worse, but what kind of life is it to just sit and do nothing as you wait for the pain to subside?!
You just want to live your life, a normal life, do things for yourself.
But today, you are bound by pain.
So you wait.
Maybe tomorrow will be better.

A day in my life with TOS.

It is 6:48 am.
My dog is at the edge of the bed, whining and doing her potty dance.
I roll to get up off my chiropractic mattress and realise I should not have slept on that pillow last night because now an ache travels down my neck into my back and all the way down my arm with just the lightest little throb.
My feet land on the floor and I reach back to rub my neck as I head toward the door to let the dog out.
A few attempts at turning my head slowly, left and then right, and back to the left, bending my arm and rotating at the shoulder. A systems check if you will. "Feeling pretty good this morning", I think to myself.
Mind you, this is compaired to the constant ear, neck, back, and arm throbbing I had before my first rib was surgically removed through my armpit two years ago because I'd been living with constant arm pain due to Thoracic Outlet Syndrome. Yes, compared to that I think I'm feeling pretty good this morning.
While the dog does her morning business outside I get the coffee started, half-caff...or decaf, depending on the morning. Too much caffiene would surely tweak my already strained nerves and tip off a cascade of effects that cannot be turned back once they begin.

I will be driving today, a good half-hour from home, so as I get myself around for the day I know I must wear my hair down. Putting it up would force my neck into a position while I'm driving that would cause my neck to cramp, nerves to pinch and arm to ache. So today I will brush it back and reconsider chopping it all off.

I apply deodorant, and cringe as I rub the stick over my rib-resected armpit, enduring the now familiar prickly numbness from nerves that did not grow back postop.
"Did I get it on?" I wonder. I have to actually watch myself smear it on to be sure.

Before I head out the door I wash down some pills, stuff my cell phone in one pocket and my little pocketbook and keys in the other pocket, and head out the door. Sigh. I miss being able to carry a purse and feel prepared for any emergency. It wasn't a tough choice though really, cute purse or throbbing arms? Enough said.

As I head down the driveway, I instinctively pull my seatbelt out and hold it away from me with one of my thumbs as I drive. The pressure of the belt against my neck and shoulder causes that pinchy pokey nerve pain that eventually escalates into throbbing constant aching- and that I cannot bear. So I compensate, and pray as I drive with my seatbelt sortof on that God will protect me and any police officers will be understanding. (Update: I have since received a letter from my doctor stating that I need to adjust my seat belt for medical reasons, and I also ordered a belt clip that holds it away from my neck.)

After my apointment I stop at the store. I've gotten used to parking far far away from the store, out where I can pull through so I don't have to wrench my neck around to look behind me to back out of a parking space.  A couple seconds too long in that position and the pain in my arm coupled with the very real possibility of a blood clot in my non resected TOS arm prompts me to not care about having to walk a little further into the store.

I only need a few things from the store today, but one of them is milk.  I know from experience that the weight of several pounds of milk hanging from my arm, pulling down on the cervical rib bones in my neck will cause spasms, possibly pinch off blood flow, which makes my hand a nice shade of blue. Carrying milk would definitely squish nerves and set off that darn chain reaction that does not stop once it starts up. Besides, blue doesn't match my outfit today -so I'll just grab a cart.
I run into a friend I have not seen in a while. She wants to hug me, and being the people pleaser I am, I oblige; even though my experience is that I am always just one too tight hug away from misery.
Later in the day I hop online to check a few things, propping the laptop up on pillows or books so I don't have to look down.
The day winds down and it's been a good one, productive, with lots of adjustments along the way to avoid flaring up. Awareness, as my physical therapist would remind me, I must always be aware of what my body is telling me. Why is that pinch in my neck there? Listen. Pay attention. I do a mental systems check. Is my posture off? I notice my head is turned slightly to the left as I'm watching tv.
I need to change where I sit so I am directly in front of it.
Always having to pay attention to these little things in order to avoid incapacitating pain is a skill one hones over time out of necessity. Why that throb in my arm, but only to the elbow this time? I notice my bra straps are a bit tight, so I push them out to the edge of my shoulders, away from the tender nerves and arteries that cannot take the pressure.
The dog is back. She is looking pittifully up at me with those sad eyes asking to go for a walk. I clip her leash onto my belt loop, and bend my arms up at the elbow as we walk to avoid any arm and hand throbbing my letting them hang down.

It's time for bed now. As I drift off to sleep, flat on my back without a pillow, I wonder about what tomorrow will bring?What adjustments will need to be made?
Whatever it brings, I'm just thankful I've gotten this far along the journey, even with TOS.(Thoracic Outlet Syndrome)

Address the Fear

My daughter worries.
What will her future be like?
When will the symptoms appear on the other side with the same constancy that moved us to pursure rib resection a few years ago?
What jobs can she get with limited use of her arms?
She worries over what may bring on the pain.
Should she even try for jobs that require lifting, or repetitive arm movement, or will that aggrivate matters?
Should she even consider certain career tracks that may be appealing to her because she may not be able to follow through?

She is at school now, carrying loads of books and stuff several floors of stairs up to her dorm. Her arms throb. But she does not want to complain, she wants to be like everyone else.

Oh, those cervical ribs.

She has had to quickly educate her friends about TOS, asking them to not hang their arm around her neck or hug or try to massage her shoulders.
Every time these questions come up, I remember well the advise of the Doctor. However, my thought is to give it a try! See what happens.
Don't let a diagosis hold you back.
Learn your limits by giving it a try.

Maybe you can't do as much as everyone else, or do things the same way-but you can adapt, adjust, learn and find ways to accomplish your hearts desires.

How to alleviate fear?
Education!
Support!
Ask for help!
Health resources
Medications
Prayer

Being open, honest and flexible regarding options for treatment and assistance is key to living the fullest life possible with TOS.

Juggling TOS 102

More tips I have learned that may be helpful to the fellow TOS traveler...

Whenever possbile, when parking your car, even if you have to park farther away, find a place you can pull through so you do not have to wrench your neck around to back out of a parking space.



The furniture you relax in like living room couch or chair, should fit 'your seat'. When you sit, your feet should be on the floor, your back, head and neck supported and not pushed forward.
If the fit is not right, prop yourself with pillows, even using a large bed pillow to get the fit right.

Learn ways to de-stress. Deep breathing techniques can be very helpful.

A Therea-cane or S-hook can be helpful for massage.
I have found The Trigger Point Therapy Workbook to be a helpful resource.

You may enjoy loud, fast-paced music; however, softer, calming music may be a refreshing tension reliever.

Educate yourself on your health condition. Knowledge can help take the fear and stress from the situation. Libraries, internet searches, youtube videos, forums of TOS patients can all be very informative and helpful.

Learn to break down some jobs into smaller more manageable tasks. Such as carrying groceries-ask for bags to be loaded very lightly, and carry less. Many stores will load your groceries for you as a free service if you request.

Take care to get enough sleep, the lack of which greatly affects stress and tension levels, and therefore can trigger TOS pain symptoms.
Melatonin tablets can be helpful. A small snack at bedtime may be advised to avoid middle of the night drop in blood sugar from waking you.

Find and utilize the support systems you need to cope with TOS.
Online support groups and forums can be a great encouragement and resource.
Local hospitals, community centers, churches and libraries all can be places for meetings that might benefit you and help you meet others with similar concerns.

Stay tuned for Juggling TOS 103....comming soon!

Juggling Thoracic Outlet Syndrome (TOS) 101

Even with stretches of relatively symptom free days, I have learned the hard way I must stay on top of managing any symptoms that do begin to show up, and juggle several things to help keep symptoms at bay.
Here are a few tips I'd like to share that may get you thinking about what you might incorporate into your routine to help alleviate your TOS symptoms.



Do not wear heavy winter wool coat, especially for several hours at a time.
Go for a thermal but lighter winter coat.

Do not hang purses, bags, computer bags off your shoulders - ever.
Opt for hand held, and limit use of those to only when necessary.
Some women would never belive it, but it IS possible, and very freeing, to carry necessities only in your pockets.
I have sewn a small patch of velcro onto the inside of one coat pocket to keep my small card, money wallet from falling out.

Do not wear heavy beaded necklaces or scarves made of heavy material.

Do not wear your hair in a pony-tail, at any length, but especially if it is long and heavy. It forces you to carry your head in slightly a different position, taxing your already stressed neck and shoulder muscles, especially when sitting or riding in a car.

Do not wear very heavy winter sweaters. Opt for light layers.

For the Laides-Do not wear Bra straps tight, and avoid racer-back style bras as the straps push in toward neck/brachial plexus area.
Push straps to outer edge of shoulder, or invest in a good strapless bra.

Do not force yourself to do the many upper body exercises you see suggested for health and weightloss.
Focus on what you can do. Walking and cardio is good for people on a TOS journey. Per my own doctor's recommendation, for the rest of my life I should avoid pull-ups, push-ups, and gym machines that repetitively strain the neck and shoulder area...or risk a flare-up. Even Thera-bands cause flare up for me.
No excuse to avoid the sit ups though;)

Do not look down at laptop or computer screen. Get it up at eye-level! Use couch pillows, books. Don't block the computer air vent, but get it up at eye level for better head neck upper body posture.

Do not drink excessive caffiene; exacerbates any condition dealing with nerves.
Cut back, go decaf, find a new beverage- it does help.

Sleep with the right pillow for you, which may be no pillow at all.
A too-fluffy pillow is terrible for the TOS juggler.
A small towel rolled up under your neck, a small travel pillow, any of the fancy cervical pillows sold at bed stores, find what works for you.

Learn how to politely inform people that it is painful to hug when greeting.
Also, the friend who likes to drape an arm over your shoulder, no no.
Maybe become known for your cheery handshake or high-five, fist bump, whatever.

Do not drive with your head forward, pull back. This tip has SAVED me.
I did not realise I was driving like that, with my head sticking forward, stressing my poor neck.

Look for more tips in Juggling TOS 102...and Juggling TOS 103...and 104!

If you've wandered in...

If you've happened to wander upon my blog, be sure to take a minute to back track and read about the beginning, about how my kids both have the same condition and how it has affected our lives.
The labels along the side may be of some help if you are looking for somthing in particular.
I hope you find some helpful tidbits here.
Feel free to email me if you have a question.
"It is what it is."
Life moves on, even with TOS.

"Be a professional apple-bobber!"

"...or a soccer ball tester."
"...or a grape stomper/juice maker."

These are some of the ideas I've received after I tell people about my doctors assesment of my employability at my appointment with him today.



When I asked my doc about going back to work and what I had to avoid he said-

"NO doing any; overhead, shoulder level, repetitive arm motion, lifting, or office work using a computer/mouse. No excessive talking on the phone without a headset."

But other than that, I can totally go back to work. (smirk)

So if you have any bright ideas what someone might do to be gainfully employed without using their arms, feel free to suggest!

Moving forward, at leat a half-step

Things remain the same.
I'm thinking it may be time to do or try somthing new to see some results.
Some Physical therapy maybe.
But I'm not complaining...too much.
I am definitely changed, not as desired.
I think I will not ever be the same, but maybe thats good.
Not that the pain is good, I still can't see pain as a blessing.
Maybe someday I'll get there.
Through it all, I'm learning.
Hopefuly growing some deeper roots.

I wish I was at the beach.