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~

My TOS Diet days 12, 13, 14, 15

It is time for a TOS symptom update.

When I began this diet, I was having a lot of TOS pain, so much that my doctor prescribed Gabapentin to see if it would help. I also got a very expensive tube of compounded cream to rub on. 

That was fifteen days ago. I've not started the prescription yet, and the cream is use as needed. Because it is so expensive, I've only used it once so far.

I have noticed that I have not had the usual headaches, and the light throbbing I've become accustomed to in my neck, and arms is very reduced...I barely notice it at all. I've only needed ibuprofen twice in the last few days-another good sign. I think possibly cutting out sugar and refined foods, coffee, and eating only foods considered anti-inflammatory is helping, enough that I am motivated to continue walking by my favorite donuts at the grocery store...and that is saying a lot.

Most mornings I have two cups of green tea, sprouted grain toast, eggs, or whole grain cereal and almond milk, and a glass of water.

Lunch is usually a smoothie, lots of fruit, greens, ground flax. More decaf tea in the afternoon.

Dinner has been challenging, making food that is tasty and anti inflammatory.

Recently we've had:* baked chicken with pesto and cheese on top, brown rice, green beans.

*Turkey meatloaf, spinach tomato salad, sweet potatoes.  

I made banana icecream in the blender couple nights ago, so yummy..the grand kids loved it.

I'm also hanging in there with the gin soaked golden raisins, eight of them every night, on a teaspoon. I take them all at once, chew fast, gag, drink water. My tongue feels tingly after...I'm giving it another week. If the pain gets worse when I stop taking them, I guess then I'll know it was helping.

Today's lunch, pizza on sprouted grain tortilla, two of them. 

That's the diet scoop on day 15.

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.

My tips for TOS surgery recovery

-Pain meds. Be SURE you have enough pain meds before you leave the hospital to last at the very least one to two weeks...but preferably longer. Do not leave the hospital without sufficient pain meds for your recovery-which I have heard of happening. I also highly recommend nausea meds. (Zofran)

-My surgeon recommended B vitamins to help with nerve healing.

-Both my kids who had resections and myself all lived and slept in the recliner for the first couple weeks. *Make sure the footrest handle is on the opposite side of the side you are getting resected-you will not be able to maneuver a lever with your resected arm! Laying flat was difficult. A wedge pillow is nice, or at the very least lots of pillows to prop yourself up in bed or on the couch!

-Have a notepad and pen handy to write down every time you take any med, and also write down the next time you can take that med. Trust me, this is a good idea!

-Freezer meals, and lots of easy snacks- plan ahead meals for at least two weeks, longer of you can.

-Have movies to watch, books to read stocked up. My daughter says not movies that are too funny because laughing hurts for a couple weeks postop.  My son played video games for two weeks postop, which I think got him moving his hand more. You will be naturally tired, your body is working really hard while you heal and meds may add to that tiredness. But you need to take it easy and if you have tv, movies, video games, magazines, or books its a nice distraction.

-Lemon water, real lemon juice-two-three tablespoons in a glass of water, hot or cold as often as you can is good for keeping kidneys working with all the meds you will need for a while. Lots of liquids are important for healing.

-Magnesium capsules, helps keep your bowel movements naturally regular and is also a natural muscle relaxant. Constipation from pain meds is common, so stool softeners, drink smoothies with added ground flax or citrucel, whatever helps keep things moving.

-A speaker phone, or earpiece for your phone so you don't have to hold the phone up to your head.

-Help. If you can line up help with housework and even with showering and personal assistance for a few weeks you will be glad you did. At a minimum get help for the first week at home even if it's just someone checking on you once a day.

-Loose button or snap front shirts, easy pull-on pants, slip on shoes. Loose zipup exercise jacket with front pockets-in case you leave hospital with drain or morphine pump you can stick it in the pocket. Three weeks postop I bought a strapless tube bra at Walmart for $5 so I had enough support to feel comfortable leaving the house. I highly recommend the strapless bra by Marena.

-A driver. If you have follow-up appointments postop, you will not be driving for a minimum of two weeks, I couldn't drive for several weeks postop.

-Ice packs. Bags of frozen peas in a ziplock or a ziplock bag with 1 cup water and 4 tablespoons rubbing alcohol make good ice packs.

-Easy hair. I do not recommend pony tails as that tilts the head forward when you are resting, also hard to put up with one hand.

-I found a shower seat at a yard sale, it was very handy the first couple times I showered postop as I was SO tired.

-A squeeze bottle filled with water to squirt clean yourself after using the bathroom, or moist wipes.

-An arm sling- for when you leave the house to protect yourself from people who may want to hug you, and to keep you from overtaxing your arm if you are out and about.

-My daughters recommendation, a handheld shower sprayer, makes it a lot easier to shower especially if you don't have a lot of help.

-Tv tray to keep drinks, remote, beverages close at hand.

-Avoid sneezing at all costs for a few weeks-plug your nose, avoid sneezing triggers!

-Do not carry or lift anything remotely heavy. Break things down to smaller sizes, half gallons of milk or smaller, single servings.

-Do not allow pets to jump up on your chest postop, get help with pet care for a couple weeks if you can.

-An alarm, to wake you to take medication on time. You do not want to oversleep and miss a pain med dose and wake up in agony!

-Chocolate of some kind...very soothing :)

So how are things? Four years later...

I'm so glad I've kept this record of what it was like for me to go through rib resection and healing postop. My four year resection anniversary had me going back to refresh my memory of what I was feeling and experiencing at this time four years ago.
*See new, 4 year postop, pictures at the end of this post. To compare, see postop pictures from 2009 here.

It's interesting to go back and re-read posts from that healing phase. I remember it well.

Truth is, four years after right sided rib resection, I feel a bit stuck in that healing phase...in my mind and emotions. Having rib bone and muscle cut out of my body was dramatic and left me with emotions I am still working on getting past.

The initial healing phase postop was brutal for me because of my nature. I am a very sensitive, type 2 person, always picking up other peoples vibes. I have even been called "touchy".
When I am in pain, my nerves are already on total overload, so any talking, touching, loud noise or movement feels very jarring and abrasive to me. Just ask my husband about trying to comfort me years ago while I was in labor, poor guy. He wanted to help and each time he started rubbing my back I would hiss at him- "Don't touch me!"

However, healing takes time, that cannot be overstated-especially after rib resection surgery where nerves are stretched, things are removed and muscle rearranged. No one can expect to remain still and undisturbed for that extended healing period. I remember feeling so incredibly frazzled all the time after surgery.
Other folks with different natures probably do not experience the same emotional postop healing issues and would take my comments here as overly dramatic. In my experience (and that is what I share here on my blog) that postop phase was traumatic- in fact my psyche has still not recovered. 
Thus, the left sided resection that was recommended, that I realize would spare me from some of the left sided TOS issues I deal with, well it's just too hard for me to fathom signing up for more trauma.

Having said that, my current state is- not too bad.

The long red hair is shorter now. It had to go, too much weight for my TOS neck.

I had additional surgery two years after resection that improved more of my TOS symptoms.

I currently go for ABM (Anat Baniel Method-a type of Feldenkrais) sessions once every two weeks. The mind/body education and gentle movement of this therapy are teaching me how to organize my movements to lessen the stress on my neck, shoulders and upper body. Through this therapy it has become clear that my right side, the side that was resected four years ago, moves more, is free-er, less restricted, and my left side-where I have the bigger cervical rib and still need resection- is more frozen, stiff, and very guarded.

I have many of the common issues I see other TOS folks commenting about on TOS support groups.

Weather affects my pain level.
I have lost upper-body strength from limiting my arm movement.
I juggle a lot of things to minimize the flareup's of TOS pain.
Driving more than a quick trip always leaves me needing pain meds afterward.
I worry about a left-sided blood clot (I'm super careful with that arm when I sleep at night).
I, like most TOSers, continue to seek ideas to manage my life with TOS.

On my list of things to try are; acupuncture, taping, botox injections, Melt method therapy, anti-inflammation diet. My doctor prescribed an antidepressant to help with the pain. I was *very* skeptical and resistant to the idea, but dealing with pain has a way of wearing you down.
I gave in and decided to give it a try. Once I was past the initial startup side effect phase, I am happy to report that I have noticed a reduction in TOS achy pain symptoms.

I take omega 3, B12, magnesium daily. I will be adding vitamin D soon also.

I recently went back to working as an in-home caregiver, very part time, very light duty.

I have gained weight, up two sizes- partly from restricting my activity to avoid TOS pain, partly because donuts make me feel better-at least while I'm eating them.

All-in-all, my life with TOS has its challenges, but they are manageable.

I have found great support and ideas from online TOS groups. I appreciate the people who share their common TOS struggles and encouragement however they can-with suggestions, a word of support, or just offering a place to vent where everyone understands, because we are each living our own journeys... with TOS.


Four-year postop pictures below.
You can see my right resected side is lower than my left side. My neck on the right is straighter also.

The transaxillary scar is barely visible, 2 1/2 inches below the crease.
My armpit is mostly numb, including part of the back of my upper right arm .

 

So that's the scoop four years postop. As always, if you have any TOS questions, don't hesitate to email and ask.

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.

Seat belt clip Review #2 - The LooPo - and more on proper seatbelt use for TOSers

Loopo clip review- http://www.seatbelttensionadjuster.com

My experience of the LooPo seat belt tension adjuster clip is- Thumbs up! It is really fantastically easy to use, clips on and off with no effort. Simply clip the LooPo onto the shoulder portion of the belt- up by where the belt retracts, clip your seat belt on, and then set the tension of the shoulder strap where it is comfortable for you.  You could easily use the same clip on any belt, easy on and off.
I found driving with this clip on my seat belt provided peace of mind.  I am still able to wear a shoulder strap, and there is no pull or tug on my arm or shoulder.
My daughters review of the LooPo is- "I like it!"
I just ordered more of therre I like them so much...one to take with me in case I ride in someone elses car, one to leave in each vehicle, and I will order more to give as gifts to people I know would find these helpful. I LOVE to find things that are helpful for TOSers!

**3/3/13 Update! I've been using the LooPo seat belt adjuster for several months now, and I have learned that if I do not slide the locking switch and slide the LooPo down the belt so it can retract, then my seatbelt flops around, gets shut in my car door, is hanging on my seat when I go to sit down. It is still the best seatbelt adjusting clip I've found, but not without its minor hassles.

~ ~ ~

On another note, I ran across several posts in an online forum regarading seatbelt exemption and tickets given for improper use. One lady in California got ticketed for putting the shoulder part of the belt behind her, even though her belt was fastened, she got ticketed anyway. Officer told her-"Belt must be fastened in the manner intended by the manufacturer."
This is why I got a note from my doctor-one for my glove box, one in my wallet.  I am also testing different seat belt adjusters so I can still wear a belt and be safe, but do it more comfortably, without causing a flare up when I drive. 
More on Michign belt law and How to wear your seatbelt properly.
This link states there should be no slack in the belt, unless you have a doctor note that states you need to adjust our belt due to a medical condition. You could also opt to request a note from your doctor stating you are exempt from wearing your belt due to TOS.
I personally am more comfortable continuing to wear a seatbelt but using some type of clip that provides a slight slack. The belt will still kick in and serve the intended purpose and it's better than not wearing one at all.
I am continuing to look for other types of seat belt clips and will give my reviews of them in future posts. For now, I am happy with the LooPo seat belt tension adjuster. Check it out, and above all, stay safe out there on your journey with TOS.

Seat Belt Clip Review #1 - Master Design waist belt clip

Seat belt clip Review-

This particular clip by Master Design is very hard to re-open once you snap it closed. I had to pry it open with a screwdriver. You would need to have a clip for each seatbelt you use. My experience with this particular clip was that once you slide the shoulder portion of the belt in the clip, the tension pulls up on the clip and twists the whole belt up so that the shoulder portion of the belt can slide out. My daughter, and fellow TOSer, gave me this review of the clip- "It still leaves the shoulder strap against my shoulder, still putting pressure on it, so it really does not help at all." 

I have a different kind of seat belt clip on order. It clips up where the belt retracts and holds a bit of slack in the shoulder portion.  I will post our review of that type of clip soon.
Above all, stay safe out there on your journey...with TOS.

TOS-friendly vehicles?

I think my new dream car is a voice-command K.I.T.T. car. Recently I have been looking for a car. This is quite a feat when you have TOS, because there are several things I consider a must in a TOS-friendly vehicle. First, tilt steering. Forget keeping hands at ten and two, hands on the wheel lower is helpful. Secondly, the head rest. Could someone please explain to me why the head rest in cars curve forward the way they do? Being shortish, the head rest always forces my head and neck forward in an awkward position. *I actually take my head rest all the way out, flip it around and stick it back in so it curves back. Third, seat belt tension. If the belt is not height adjustable-forget it. My daughter uses a velcro-on shoulder pad that helps keep the belt away from her neck. I hold the belt away from me alot of the time. (I need to get a doctor note about my TOS in case I get pulled over.) Also important would be seat comfort-very hard to find in newer vehicles. Visibility is a huge issue-not having huge blind spots but nice open windows in the back so TOSers don't have to crank their necks around so much. Also, four doors, not heavy long doors. Steering that is nice and light and not tough at all. Optimally a car that would be great for me with the TOS issues is a car with no steering wheel but controlled by a hand held joy stick. The rearview backup system that warns and stops you if there is something in the path behind you would also be a great option. My cheapskate way of getting around the problem of backing up (cranking your neck around to see behind you and possibly cutting off the blood supply to one of my arms) is to always move forward. I always park where I can pull straight out, even if it means walking farther. Backing up is a bugger with TOS.

If you know what's good for you...

Why is it we resist change, even (sometimes especially) when we know it's what's best for us?
I have posted tips here, things that may help alleviate some TOS symptoms.
Do I follow my own advice?
Mmmm...not always so much.

I want to do Feldenkrais lessons daily-but they are so long - 45 min.
I sit in this chair that is so terrible for my neck and back. But it is warm and comfy and closest to the tv.
I do not drink enough water.
I am looking down at my laptop typing at this very moment.
I put my hair up in a ponytail yesterday and my neck felt stiff, unbalanced, and today hurts.
I have not done rom exercises in forever.
I've not been clipping the dog's leash on my belt, and she jerked my arm the other day, the muscle between my shouderblades in back is still recovering.

It's no wonder I fear I'm always on the brink of a flare up, an episode of debilitating pain.
I want to live as if this TOS is just an occasional visitor instead of a permanent unwelcome resident.
And I guess I do live that way alot of the time.
"Slow down." "Don't do that."- echoes in my head.
I keep going, ignoring the nagging of what I know is good for me.

And I know what is good for me because I have spent so much time reading about TOS and treatments, etc while I have been unable to do anything else, saddled by pain.

So when TOS eases up, I try to forget it and all the TOS rules.
I know I'm not doing myself any favors in the long run.
Stupid TOS.

Some days are just too much-Juggling 104

When you have TOS, there are lots of things to be mindful of in managing your condition so your flareups and pain are kept at the lowest level possible.
In previous articles here, I have discussed some of the things we can be aware of so we can adjust where needed.
Some days, however, it can all get to be too much.



We mind our posture, do our range of motion exercises, and tuck our chins.
We avoid lifting and carrying, we loosen our bra straps and stop carrying bags slung on our shoulder.
We drink our water, we read and learn all we can about TOS, we ask questions.
We learn our limits and try our darndest to stick to them.
We hate it but we must talk about our physical situation with our loved ones, in hopes they will be understanding and even supportive.
We warn-"Be careful hugging"-sometimes no hugging at all-too painful, though they do not really understand. How could they unless they walked a mile on our TOS shoes?
We massage, we heat, we ice, we apply creams and take pills.
And then tomorrow, we will start all of this, all over again.
It can be exhausting, and to top it all off then we hear from a well-meaning person-"Well gee, you don't look sick."
Sigh.
My fellow TOSer, I gently pat you on the back and say-I know.
This thing is trying, frustrating and difficult.
Maybe sometimes we need to drop all the stuff we think we need to juggle so we can reassess and just pick up the balls that are most important and let the other ones go.
We just do the best we can each day, and keep trying to juggle our way through on this journey with TOS.

Another post for the Ladies with TOS

Today I'd like to review a couple tips for the ladies dealing with TOS out there.

There are many ways we learn to adjust our lives and compensate for TOS pain.
Being aware of what triggers your TOS pain to escalate has been very important for myself, and I believe can be an aide for you too.

One tip to keep in mind is to not wear a purse or bag strap across your shoulder-even further impinging your already strained thoracic outlet.
It pains me still some days to not be able to sling a cute purse over my shoulder-but it simply is not worth the physical pain. Not at all.



My advice is-get a small, thin pocketbook for cach and cards. I even carry a couple pictures and a tea bag in mine.
Stick it in your pants pocket, or in a zippered or velcroed jacket pocket.
(You can stitch on a small piece of velcro to keep a pocket shut.)

Why do women feel the need to carry ALL that stuff around with them any way?!
It is so unnecesary, and SO freeing to have arms and shoulders free without a purse.

There is also the option of 'wristlet' style pocketbook that would hold a few more things, or fanny pack around your waist.

(Be careful to not fill coat pockets so they are heavy and make your coat hang heavy and put extra strain on your neck.)

Now to move on to one of the most common issues we TOS ladies face...the bra strap.



The v-back sports style bra can be the worst for TOS, with its angle inward toward the neck and typically do not have adjustable straps.
Take a look at your bra straps and see if they may be too tight, too narrow, digging in.
For years I have pushed my straps to the outer edge of my shoulders-away from my cervical rib area.
At the very least loose up those straps, but look for a sleep bra, or bra with wide cushioned straps. And go without whenever possible...unless the strain from large breasts pulls on your neck and shoulders.

Which leads me to reiterate a post from the past, about TOS ladies considering the idea of breast reduction to ease TOS symptoms, especialy if you are large chested. It's something to think about.

Stay tuned for more tips to come!

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!