Diet affects pain and physical challenges more than you think!

If you've not heard of Dr. Terry Wahls, watch this Ted talk video and be amazed at the results she is experiencing in the reversal of her own MS disease by changing her lifestyle and diet!!

I know it sure inspired me to keep at it. I have seen good results from knocking junk out of my diet as well, able to get off meds, moving more, less pain.

http://tedxtalks.ted.com/video/TEDxIowaCity-Dr-Terry-Wahls-Min

**If you are a TOSer who is experiencing improved health and less pain from diet changes, please email me, I'd love to interview you for a guest blog post!

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

TOS Walking

I spent a few years being pretty inactive, using TOS as an excuse to not do much.
Seven months ago I began walking a half mile a day. I got increased aching and nervy zappers in my arms, neck, and head from walking, but I persisted and increased my distance slowly.
It felt good to accomplish something, one step at a time, an entire half-mile. It was an improvement. It was a start.

I decided I was going to have pain if I kept sitting on the couch, and I was going to have pain if I went for a walk. I might as well go walk- the fresh air would do me some good and walking might help in the long run.
So I've continued to walk.

The last few weeks I've been logging up to 20 miles per week on hilly dirt roads. With an earbud in one ear, mp3 player tuned to NPR or some peppy music, I take off and aim to complete my walking goal of the day. Around the block (3.5 miles)? To the end of the road and back (2.0 miles)? To visit a friend in town (3.0 miles). As I walk, I remember stories my grandma used to tell me (repeatedly) about walking to school 3 miles one way, uphill, in the snow. Does everyones grandmother tell that story?

Walking with my arms bent helps reduce the hand swelling a bit. I push myself to hit a 4 miles per hour pace. Nervy arm, neck, and head pain still increase after a mile or so, especially if it's colder or windy outside. I try to push through it, sometimes slow down for a bit, let my arms hang at my sides a while, then pick up the pace again.

I googled 'walking and hand swelling' and found it to be common and not just a TOS thing, due to restricted circuation. I open and close my fists a lot while I walk and grab a frozen o.j. can when I get back home.
I've found that if I push too much and walk too far I sometimes get more pain the next day, but if I'm inactive and skip walking a day or two I also get increased pain. Balance is key for me on my journey with TOS.
Some of the benefits of chosing to walk have been stress reduction, weight loss and connecting with a few neighbors I normally wouldn't.

So I'll keep walking, because even with TOS and it's glitches, I can.

*Stay tuned for a post about a walk I'm doing with a fellow TOSer soon, looking forward to that!
I'd love to walk a 5K Spring 2015 with a fellow TOSer...please email me if you're interested!!

Gentle hugs~

My Physical Therapist Said - Part 8

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

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

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

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

Don't hang in there & gentle hugs~

Guest Post - Tara

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

I asked Tara to answer the following questions for us:

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

~ ~ ~

Thanks for sharing with us Tara. 

If you have any questions or encouragement for Tara, you may contact her here.

Gentle hugs~

Lidocaine patch - My review

I cut the Lidoderm patch in half  (to conserve and get a few more uses from them) and apply to the area that hurts most. I really need a bath towel size patch, but I digress.

It feels cool when I first apply it, warms to body temp quickly.
Then I wait to feel something. I keep mentally checking in to see if there has been a change in the pain level. I usually get preoccupied and forget I put it on.  Occasionally, I will feel a tiny bit of prickly feeling where the patch is.  Directions say to only leave the patch in place for 12 hours, leave off 12 hours.  I have saved the plastic backing and reapplied mine to use up as much of the lidocaine as possible (cheapskate). I've read its ok to do that, hope that is correct?

I can not say I have noticed much relief from the patch, but I keep putting them on hoping I will.
As it stands, I'm not thrilled with the lidocaine patch, it comes off fairly easy, curls up at the edges. I've even used surgical tape to make it stay on.
For me, it offers minimal pain relief. That's the scoop.

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~

 

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.