My Physical Therapist Says Part 10

I have one more P.T. appointment in a couple weeks, then I'm on my own for a while. I can't lie, I'm a little anxious about that.
Words fail me to adequately express how much I have appreciated the understanding, knowledge and approach of my P.T.
After a few BAD rounds with therapy over the years, I walked into P.T. nine months ago very guarded, but desperate for change.
My main hurdle was, and continues to be, in my mind.
For example, I had a pain flareup last week that reminded me of the godawful pain I had most of the time a year ago, and it was discouraging.
I thought I was stronger, and better, but there it was screaming at me, messing with my head. I forget that I spent years being angry and inactive because of the pain. I get impatient and want things to progress faster, but things have come a long way, and for that I'm very thankful!!
So, I have been thinking about how I can keep my motivation going since I won't be going to P.T. Going backward is not an option, especially after that pain attack last week.



So I decided to face a fear of mine and I joined a gym. *shudder*

It's whole new, foreign, scary world for me.

P.T. guy said this is a good thing for me to transition to, that I should work on lots of cardio, treadmill, bike, eliptical (but be careful with the arm piece), and lots of leg work.
NO ARM MACHINES for a while.
This will challenge the nervous system in new ways than what I've been doing.

I'm supposed to keep doing my regular arm glide stuff, and also work on core stability, on a Bosu Balance Ball at the gym, or sitting/balancing on my exercise ball at home-no touching hands and feet.

P.T. believes after several months of working on this at the gym on my own, I should be in a position where I am strong enough to tolerate revisiting P.T. and he can then work on challenging the nerve and working toward making more progress in desensitizing and reducing the flarup potential.

So, I have a new little TOS mountain to climb on my journey, one step at a time. The view from this part of the journey is much better than back where I was just ten months ago. So, I'm hopeful, and I'm moving forward, even if it is a bit uphill.

Just this week I heard someone say that on our life journey, there will be different people along the way at different times. I'm grateful beyond words for the people who have been with me on my journey this past year. My heart overflows.

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~

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.

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.

Alternative to traditional Therapy for people diagnosed with TOS

I found these videos to be remarkable!
Two TOS patient testimonials with very hopeful outcomes.
I hear so much of my own struggles in what each of them shares.

I find such hope in the closely related Feldenkrais and Anat Baniel Methods.
This is worth a look if you want to help yourself or someone you love who is struggling with TOS.



I continue to do Feldenkrais lessons at home via MP3 player, finding it very helpful, relaxing. I am learning so much about my body, learning new ways to move, feeling more graceful and capable.
Those are two words I didn't think I would say about myself ever again.