TOS Resolutions for the New Year

* An MRI, to see what's going on since rib resection back in 2008, since my daughters rib entirely regrew and I continue to have nerve/muscle issues.

*Flouroscopy guided injection into spine, C4, to see if that helps

*Try acupuncture

*Work on core strength and stability at the gym, continue with physical therapy for upper body at home

*Meet more of my fellow TOSers, hopefully for a 5K walk/run

*Continue to tweak the TOS diet, more green smoothies, fish, etc...

*Essential oils-research, try.

*Try Biofeedback

*Figure out better, ergonomic seating options, especially for time on computer

*Keep diggin' into this TOS thing, learn more, understand

*Kick TOS in the butt

*Share my journey and encourage my fellow TOSers that even though the pain can be horrible, life can still be good.

*Live well!!

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~

Things that are difficult with TOS

Carrying a bag or purse-in fact, I do not ever sling any bag or purse on my shoulders anymore.

Backing up out of parking spots-wrenching neck around.

Pulling open doors-I use my foot alot to help get doors open.

Clothes shopping-pushing clothes on racks at shoulder level fatigues my arms super fast.

Planning-the unpredictability of symptom flareup.

Chopping, cutting, stirring when cooking.

Figuring out a good, ergonomic way to sit, (to avoid slouching) or what to sit on, that does not aggravate symptoms.

Traveling, going through xray scanner with arms up, and pulling a suitcase.

Waking the dog

Folding laundry

Vacuuming

Turning radio station in the car-arm extension-zappers.

Looking down to read...book, computer screen.

Wearing anything on my neck-scarves, necklaces, heavy clothing.

Pulling house windows up or down.

Scooping ice cream.

Fixing the back of my hair.

Pulling open doors.



*I'm sure my fellow TOSers can relate.

Gentle hugs to all of you for your courage in living with TOS.

Interview-The son

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

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

Now for the interview... 

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

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

Ever have problems or pain with the other arm?

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

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

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

Would you have surgery again?

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

(Ugh. I had forgotten about that).

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

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

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

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

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

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


What advice would you give someone new to TOS?

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

Yes, (cringe) I remember.

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

Going through airport security with TOS

Recently, I traveled to visit my family, and bumped into some interesting situations because of my TOS. The first was going through airport security. There is a phone booth size machine you stand in the middle of...with your arms raised above your head, while a thing spins around you to scan you. When I saw what was comming I wondered how it was going to go over, since raising my arms above my head is something I avoid if I can help it. After dutifully removing my shoes and placing all my belongings on the conveyor belt I got in the line to be scanned. When it was my turn, I stepped in.

The security officer asked me to raise my arms, I did. Then she turned and started talking to another person, so I lowered my arms. She then pushed the button to scan me before turning back to look at me. I raised my arms while the thing was spinning, but she still barked at me-"you've got to keep your arms raised!" She scanned me again, it takes three seconds, but in the few seconds of standing there with my arms up I felt my arm throbbing when it was over. I could have requested a pat-down....ugh, no thanks. I could have, should have spoken up and told the security I cannot leave my arms raised for a prolonged period of time, but she was focused on other things (and a tad bit grumpy)and I just wanted it over with as quickly as possible. The second thing I ran into traveling was the airplane seat. Due to my height, the curve of the headrest pushed my head forward at a slight angle that gave me one option, for the entire plane trip, lean forward in my seat. I tried sitting back, slouching down, but I could feel my neck starting to cramp from the bad angle.

Next time-I am bringing a small inflatable pillow in my bag to put behind my neck so I can sit comfortably. That was a long flight-ugh. The concave design of seats is ridiculous if you ask me, they may suit tall people but not the average public.

I learned from a previous flight that putting even a small travel suitcase in the overhead compartment is not do-able for me. I bring essentials only in my lightweight handbag and check the rest of my things. It is worth it for this TOSer to not have to lug stuff around. So if you are travelling soon, hope my experiences can help you prepare to have a safe and more enjoyable trip on your journey...with TOS.

TOS Questions

I was recently asked via email if I regret having the rib resection surgery, if I have returned to work, and if I plan to have the left side resection.


My response...

"I do not regret having the surgery.

My pain was constant and unrelenting prior to rib resection, as was the case with both my kids resections.

However, all three of us continue to need to be mindful about our TOS and not do certain things that aggrivate it.

We each continue to have flare ups and intermittent pain.

Recovery from rib resection was difficult for me, being older.

I may have surgery on the left side-if the pain becomes unmanageable.

And no, I have not returned to work per my Dr's recommendation to avoid work requiring "lifting, repetitive arm movements, extending the arms, etc. Once you have TOS, even after surgery, you always have TOS." Very difficult to find work with all those exemptions!

I hope my experience is helpful to you.

Take care,

~Robin"

**I am always happy to answer any questions-feel free to email me.
My hope is that at least my pain can help someone else dealing with their journey with TOS.

And we're off!

Happy New Year to my fellow TOSers out there.
I hope it will be one of minimal discomfort for us all.

So far in this new year, that has not been the case for me.
Since my right rib resection a few years ago, I do have many days of little to no pain.
But there is always this dark dreadful little cloud that follows me around.
That question- Will today be the day I move the wrong way or over do it?
Will I flare up and be sent into the familiar cycle of inflamation, pain, spasms, aching??



Indeed I am dealing with a big flareup right now.
Quite frustrating on top of all the things I try to juggle hoping to feel better for longer stretches at a time.
My microwave rice packs have been my friend the last several days.
Lots of water, push myself to keep moving-even though I am twisted and bent from the muscles locked in spasm.

My left arm throbs.

That's what started this whole crishendo of muscles and nerves misfiring.
I was half awake early on the last morning of 2011, and I began to stretch, and twisted my neck in just the wrong way...which is easy to do with hunking cervical ribs in the way...and shoot if I didn't know immediately I was in for it.
Sigh.
So it's been ibuprophen, eating light, lots of tea and music to lighten my mood.
Hot shower, trying taking some Omega 3's for inflamation, went on a little ride in the car-with someone else driving.
Back home to lay flat.
Resisting muscle relaxers and heavier pain meds if I possibly can this time around.
I hurt-but the meds tear my insides up.
It is really work to not get sucked into the pitts when youre in pain.

Just another day on my journey...with TOS.