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~

Rare disease Day 2/28/14

http://www.rarediseaseday.org/stories/123

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~

 

TOS ~ Life XIX

Is this our fate - scar tissue and repeated symptoms post decompression surgery?

http://www.nervemed.com/thoracic-outlet-syndrome-treatment/adhesions-causing-recurrence-after-1st-rib-resection

I wanted to shared some information for all you TOSers out there who've had rib resection surgery.
I believe knowledge is power. If you don't know about these things, you cant stick up for yourself or ask the right questions.

When my daughter and son each had resection surgery in 2004 - 2005, our surgeon told us it was possible they may have recurring symptoms in the future because they were having resection at such a young age (13 & 15).

I think the link provided shows clearly why-regrowth of scar tissue and/or muscle.

Very interesting indeed, for those of us who have had surgery, especially if you have had decompression surgery in your younger years, you need to pay attention to this information.

Thoracic Outlet Syndrome Definition, A Review

I was in the midst of explaining TOS (aka-Thoracic Outlet Syndrome) to someone recently, when my listener uttered the word "syndrome?" in a questioning and slightly cynical tone of voice, as if I were overstating things.

So let's begin with some definitions for the word syndrome.

From http://www.merriam-webster.com/dictionary/syndrome
Definition of SYNDROME

1. : a group of signs and symptoms that occur together and characterize a particular abnormality or condition

2. : a set of concurrent things (as emotions or actions) that usually form an identifiable pattern

Also, from http://medical-dictionary.thefreedictionary.com/syndrome
Syndrome /syn·drome/ (sin´drōm) a set of symptoms occurring together; the sum of signs of any morbid state; a symptom complex.

Now, let's move on to definitions for thoracic outlet.

From http://www.thefreedictionary.com/Thoracic+outlet
The cavity that exists between your first rib and your clavicle is filled with nerves, veins, and muscle When any of them become compressed, a condition called thoracic outlet syndrome (TOS) can develop The cavity that exists between your first rib and your clavicle is filled with nerves, veins, and muscle. A Quick Look at Thoracic Outlet Syndrome by Big Oak, Inc.

More on just what the thoracic outlet is can be found here - http://ergonomics.about.com/od/Thoracic_Outlet_Syndrome/f/what_is_thoracic_outlet_syndrome.htm

So now we put it all together.

From http://medical-dictionary.thefreedictionary.com/syndrome

Thoracic Outlet Syndrome- any of several neurovascular syndromes due to compression of the brachial plexus nerve trunks, with pain, paresthesias, vasomotor symptoms, and weakness and small muscle wasting in upper limbs; causes include drooping shoulder girdle, a cervical rib or fibrous band, an abnormal first rib, limb hyperabduction (as during sleep), or compression of the edge of the scalenus anterior muscle.

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.

Thoracic Outlet Syndrome - Video Explanation

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)

Medifocus Guidebook on Thoracic Outlet Syndrome

To read more about this guidebook, and an article on Pectoralis Minor Syndrome, click here.

Juggling TOS 103

Come to think of it, juggling would be near impossible for most TOS folks I know.
But we do have things to figure out and need a plan of action, to be prepared in advance-more than most folks.
So more tips I have found helpful in managing my TOS...

Magnesium is a great natural muscle relaxer!
I have taken it nightly for years and find it very helpful.
250-1000 mg of a combination Magnesium in capsule or powder form(not tablet).
Vitamin C helps aide the absorption of Magnesium, and Calcium is another recommended supplement to calm tense muscles.



When watching tv, a movie, at a lecture, sit in the middle and look head-on.
Having to turn your head/neck even slightly to the right or left for an extended period may trigger TOS pain symptoms for some people (like myself).
Also, don't feel wierd about bringing a little pillow with you to support your head, neck, back.

Sit on a large exersize ball at your computer desk or even at the dinner table.
Your spine is connected, and what helps your core and lower back strengthen will travel up to your neck and shoulders as well.

If you have a dog, clip the leash onto your belt loop when going on walks. You and your dog will get your needed exercise, without stressing your arm or shoulders.

-

If more tips come to mind I will be sure to post a Juggling TOS 104.
Take care.

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.

TOS in the news...

Link->Saltalamacchia says yips are gone

Hey, whatever helps, I say!

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!

The symptoms continue

I talked with my son on the phone the other day, asked him if his arm ever bothers him now since his rib resection in 2005.
He said yes.

My heart dropped.

"But, he said, not like before surgery.
It hurts sometimes, when I'm walking around for a long time with it hanging down. I still have to hang my hand on my opposite shoulder to relieve the gravity pulling down on my arm.
Only once in a while, but yes, it still happens."

My son was the first one to blaze the trail of rib resection surgery in our family.
My heart is sad at this news of his continuing symptoms, because I know all too well that ache can keep you from plugging into life when it gets intense.

I wonder what could help him now?

Sigh.

The Journey takes a new twist

Lately I've been back to the familiar cycle of aching, spasms that wear a person out.
Still have not had left side rib resection.
Saw a new Dr. with hopes of some cortisone shots, and a referal for some refresher physical therapy.
I walked out deflated, in tears.
He flug a new diagnosis on me like a stinky wet blanket.
One that I disagree with...but is rolling around in my mind today.

Well who the hec with extra flippin bones in their neck like mine wouldn't develop chronic muscular pain?!

I guess I'm just not fond of 'labels' if they cannot be proven.
And even then, why the focus on the label for the problem and not on educating and equipping people to deal with it? Find some relief?

hmm?