Not much new TOS-wise

I have gone back to work part time, and experience flareups of TOS nervy pain I'd say a few times per week.

My discipline of doing p.t. stretches at home and sticking to an anti-inflammation diet went out the window several months ago. Therefore, more symptoms have been cropping up over the last few months, at an increasing rate.

You would think that since I've lived through these TOS issues for so long, and then found what worked to reduce my symptoms, that I'd just go back to doing what I know to do-right?!
Except it's not so easy...the discipline...doing the no-fun, painful stretches when I could curl up with a book or bake something. Sticking to the diet that had me 20+ lbs lighter than I currently am (and feeling so much better)...why not *just* go back to that?

I suppose I've been choosing the easier route, casting aside discipline, indulging myself in carbs and Netflix marathon days because it has felt mentally too stressful to stick to the highly methodical way of living that had proven helpful. Dealing with some personal life issues left me drained of the will-power to keep juggling so many things.
I just wanted to let my guard down. Relax.

That was six months ago.
Old habits are back, along with old aching pains.
TOS does not care if I need a mental break from its constant nagging.
TOS does not care if I don't want to carry its baggage anymore.
TOS is with me, and the more I try to ignore it, the louder it screams for attention.

So pay attention I must.
By deciding to get back to what I've learned works for me.
Stretching. Staying active. Enough sleep. Clean diet, low carb, less caffiene.
Giving. Finding fun and joy, having dreams, moving forward instead of parking in one place (the recliner).

Here's to a better 2016 for all my fellow TOSers...one day at a time!

Gentle hugs~

Having a moment...

I'm having a moment tonight.
words are replaying in my head I heard earlier - "this journey is about the long haul for you".
...the long haul.
I've been so fixed on whats right in front of me, trying and doing new things
that when I stop to take a look at the long view
it feels so overwhelming
the thought of having to manage TOS the rest of my life.
makes me feel the words of a poem.
I sit here thinking-I really don't want to do this, don't want to live life always fighting back the inevitable.
But whats my choice?
Go back to how things were before I decided to become a project for you all and hack at the things weighing me down, change things up, and try to be better?
Go back to being miserable and frozen and unplugged from life, angry all the time?

With all my efforts, I'm still just on the edge of this thing-
I had hoped to 'get past it.'
Now, it seems just turning down the volume of the pain is the most I can hope for.
I want to be free of TOS, but these are the cards I've been dealt.
Having to give up on things I wanted to do with my life-knowing they will never happen-
damn.
I'm sick of myself, sick of how I have to cope.
I don't think I can do a long haul
I've always just done short hauls
and then gotten tired and afraid and sat by the side of the road
and gotten fat and weaker
I'm so afraid of whats ahead.
I hate this.
The easier way is calling my name,
take the pills, stop fighting so hard
relax
eat, drink, stop thinking so much
check out, numb it, let the TOS take over instead of trying to push it back
just forget the fight.
If its gonna be a long haul-if I'm never going to get past it and pain is always going to chase me-
whats the point...get stronger-for what?

~ ~ ~

I see my fellow TOSers nodding their heads.
I know you get it.
I wrote this a year ago.
So much has changed since then for me.
All because I chose to live better, to start paying attention to what I needed in order to live as well as possible with this thing.
It continues to be a lot to juggle just to be functional, but it's worth it to live and not be sidelined by the pain!
I hope you will be encouraged that it is possible to live well...even with TOS.

Gentle hugs~

My Physical Therapist Said - Part 11

"Be in your own world while you're at the gym-work your program, don't be pressured."

"Have fun.  It’s work so expect it.  
When you need to recover - it’s ok. 
Remember, the turtle wins the race.
This is a continuation of a life change.  
You’ve done great work and will continue!"

~ ~ ~

I'm sure gona miss those pep talks.  
I'm very grateful for the help my P.T. has given me this past year.

I'd given up on physical therapy being helpful after all the awful torture other therapists put me through. 
I hope after following my journey in physical therapy this past year, that you are encouraged to give p.t. a try- or try again, try some more, with someone who knows neck and arm issues.

Always listen to your own intuition; if something isn't working- stop.
But don't stop trying.

It's hard to believe when you're battling pain, but it can get better.
Start small, each day builds on the next, do what you need to do for you.
Find support, ask for help, decide to stick up for yourself.
TOS is a bum deal, but you can chose to live as well as possible with it.

Gentle hugs~

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~

A Reluctant TOS Prayer

I stopped referencing 'God' or spiritual things after my first few posts because I want everyone to feel welcome here. 
That being said, today I want to share with my fellow TOSers something that has become a great help to me in living with TOS. 

After hearing about my continuing struggle with TOS, someone challenged me to spend some time with the well-known Serenity Prayer. 
Initially, I had to approach it as more of an inspirational mantra, because the very first word of the prayer (God) tripped me up.
Getting past the idea of asking for something from a 'God' I am not so sure is A. concerned about my pain, or B. trustworthy, is hard for me. So I skipped the first word for a while and daily read the prayer, meditating on its meaning for my life.  Does it ever apply to living with TOS!

Everyone who lives with an ongoing pain issue, like TOS, faces things that are not in their control, that they cannot change. 
Your body has betrayed you and gone haywire. 
You endure sleepless nights and foggy days, restless with pain, and wonder what the heck you did to deserve this. 
You try everything you know hoping for pain relief; consult medical and alternative practitioners, tests, surgery, therapy, shots, medications, gadgets, lotions-the list could go on, and still the pain remains. 
It's frankly been infuriating to me that I can't just rip out the cause of the pain and get on with life. 

Thoracic Outlet Syndrome backed me into a corner. There was nowhere to go to get away from the pain, which tapped into my stubborn streak. I pretty much unplugged from faith and life over the last few years. I've used pain as an excuse to not do or go or participate. 
The more I've withdrawn, the more the pain has intensified. I ate to stuff my feelings. Pity-parties with chocolate, donuts, cookies in-hand were happening daily. I gained a lot of weight, which exacerbated TOS symptoms. Add in some prescription medications and their unpleasant side effects and I was a depressed mess.

My daily thoughts were about how angry and resentful I was about being stuck in the grip of this insidious pain. My faith turned into questions and doubts. 
Watching TOS affect the lives of my kids has been heart breaking. Three of us dealing with TOS in one family?! It seemed to me 'God' must be cruel, unreliable, and cold. 
New symptoms on top of the usual TOS appeared; ear, head, and jaw pain. Instead of driving me toward humility and faith, the pain became a wall between me and anything that might touch my spirit. 
Thoracic Outlet Syndrome weighed down my life in every way. 
I'd become a different person, someone I didn't like. That is the state I was in when a very wise woman handed me a copy of this prayer.

After spending some time sitting with the prayer on my lap, reading and thinking, it became clear to me I was at a crossroad. I have been in desperate need of some "serenity, to accept the things I cannot change". 
Would I choose to continue on my life journey with TOS and take the path that leads to my life being taken over by this monster, or would I choose to go another direction, one that requires engaging in my life again? Would I choose "courage, to change the things that I can"? 

A thought occurred to me, that just maybe that bit of scripture that says"...the kingdom of God is within you..." is true concerning the things in this prayer. Serenity, courage, and wisdom are already inside me and I simply need to summon them.

Lately, I've been including the first word of the prayer. That word comes with a lot of questions, and honesty about my disappointments. Over time, my faith is being renewed.  It's looking a lot different than it used to back when I thought my requests would be fulfilled in my favor (according to 'Gods' will) as long as I asked fervently enough.

I'm learning to be ok with the mystery of 'God', and with admitting I can't fix my broken self with myself. However, I can tap into the reservoir of courage and be better, change the things that I'm able to change.

I only see and understand this life in part, and I need discernment to know when to relax and not try so hard..."wisdom, to know the difference".
It's all a work in progress, a journey. But the view on this part of the path is improving, hopeful, even healing.

I hope this well-known prayer may be a source of encouragement for my fellow TOSers as you each choose, bit by bit, one day at a time, how you will live with this TOS companion.
You all inspire courage in me. 
I wish I could take the pain and fix it, for all of us. 
But just maybe this struggle is making us into people with resilience and fortitude that this world desperately needs.

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.

Physical Therapy - Exercises

**This post is intended to share my experience of physical therapy for my TOS related issues. It may help you to know some things you might expect from physical therapy. This is not intended as advice. Please consult a professional for your own TOS issues.

Here is what my physical therapist has given me for exercises so far...

Chin tucks.
(This should be called the 'Chins tuck' because the exercise creates a lovely double chin affect).
I barely move my head at all, but pt explained to me how to do this exercise without the overworked muscle firing and tap into the deep muscle in my neck. This move burns up the back of my head when I do it-not fun! But worth it if it will help...which I'm told it will.



Neck ROM look left, look right-
Pretty simple, look toward each shoulder, slowly, hold a few seconds when you reach the point of slight resistance.





Arm bend-nerve glide-
For this one, I sit forward in a chair (or on the couch) and bend arm up, then unbend, or open up the arm, dropping down by my side but back just past my body, until I barely begin to feel that nervy sharp feeling, hold a couple seconds, then bend my arm back up.






Pelvic tilt-
Sitting in a chair, tilt pelvis forward, sightly, don't over extent, then relax and repeat.  I am very familiar with the pelvic tilt from practicing Feldenkrais and their pelvic clock concept.   I highly recommend this exercise to become aware of how the spine is all connected and greatly affects your thoracic area.  Side note-Sitting slouchy promotes compression. This pelvic tilt, if done slowly and with attention, can travel up your spine to open up the thoracic area.  It's nice.

Jaw stretch with tube-
I started a couple months ago with just moving my jaw to the side-it really hurt. But several weeks later, now I have a 3 inch piece of rubber tube I put in between my front teeth, roll jaw to the side then bite and hold 5 seconds, and repeat. I think this is targeting the jaw and referred ear pain. So far it is helping, I could not yawn months ago, but I can now :)



Shoulder squeeze-
Another pretty simple move, squeeze shoulder blades together, thinking of focusing on the lower part. This move kills for me, stretches neck muscles, makes my ear hurt.  I get jabby nervy pains in my neck while I'm holding the squeeze for 5 seconds, and my neck and shoulders throb for a while afterward-every time. Not fun, don't like it, but again, if it's going to help-I'll keep doing them.

Isometric shoulder strengthening-
Make a fist, gently push your fist into your opposite hand, hold 5 seconds, repeat 10x. Then grab fist hand by wrist and hold while pulling back with fist, hold 5 sec, repeat 10x.

Also, and probably most importantly, pt pointed out to me how to breathe properly to release tension.

I am used to lamaze type breathing, with a slow, controlled exhale. The new way I'm supposed to breathe is inhale fully for 3 seconds, hold for 3 seconds, then exhale forcefully-like a sigh, push the air out.
I've been combining this new breath with something a cognitive therapist taught me to do to help with chronic pain-to close my eyes, and as I breathe in, imagine the breath pulling together all the negative emotion, stress, and pain in my body into a swirling ball in the center of my chest, then imagine exhaling and blowing all that junk out with the breath.  (I imagine a swirling ball of gross back and green slimy negative junk).
Ok, that sounds strange, but it does kinda help.

That's my current list of exercises. Pretty simple, and they seem to be making a difference.

Gentle hugs~

Guest Post ~ Teran

Today’s guest piqued my curiosity when I read some posts of hers in a TOS support group about how she ran a race. What?  A TOSer- running?! 

OK, I have to admit here, I was a bit jealous, and annoyed by her posts. 

“Well, she must not be in very much pain then, might not even have TOS, or else she had a very good outcome postop to allow her to run, because no way could I, or many of the TOSers I’ve spoken with, ever do that. I can barely walk a couple blocks, with my arms bent up to decrease swelling and nerve-tugging pains…and she is running?! “  Those were my thoughts.

I'm admitting those thoughts you to all because I want to keep it real.  It can be difficult to be happy for the good outcomes when years of living with TOS does not turn out as well for you. 

However, since reading Teran’s posts, I've thought about what she shared. I've also recently been sent to physical therapy and am just beginning to have a glimmer of hope some things could change for the better regarding my TOS symptoms, which helped me to be open to Teran’s experience. Her story is relatable to all of us who live with TOS, and is so encouraging to me. I hope it will be for you as well.

Here is Teran’s TOS story~

Hi Teran. Thank you so much for being willing to share your TOS journey with all of us. Tell me, what type of TOS do you have, and what was your journey to being diagnosed?

I was diagnosed in March of 2012 with NTOS (neurogenic = involving nerves).  In January 2012 I began seeing an orthopedic surgeon who specialized in the shoulder, and he ordered tests to find out what was causing the pain. During that time, I started going to physical therapy and was diagnosed by two therapists at the clinic.  I knew it wasn’t good when I heard them both say, ‘TOS’.  I had heard of thoracic outlet syndrome.  A year earlier, I met a person who had TOS so I decided to go home and research it. I thought to myself, "I would never ever want to have TOS.” I went back to the orthopedic surgeon who confirmed the diagnosis.  

Can you describe your TOS symptoms when they were at their worst?

At my worst, I was losing use of my right arm. It progressed to where I couldn't write or use the computer without a lot of pain, and I couldn't lift anything. I remember not being able to lift a gallon of milk.  It hurt to drive, and it was painful to sleep.  I had to stop running, an activity that I loved. It hurt to walk because of the swinging of my arms.  I do have long transverse processes at the end of my ribs which the docs think predisposed me to having TOS, but the injury ( I was reaching back and down behind me with my right arm to pick up a heavy bag) is what caused it.  I had the numbness of my fingers, hands, and arm. I also had the pain and weakness. I also had intermittent stabbing pain. I also had the cold hand. 

What type of treatment have you pursued for your TOS?

I had surgery in August of 2012.  I had the rib resection, pec minor release and scalenectomy, the transverse process (extra rib growth) was not removed.  I do remember the surgeon saying there was a lot of scar tissue. I had various complications after surgery which all seemed to resolve with time.  The post surgery physical therapy has helped tremendously. I still go once a week or once every two weeks. My PT is a manual based therapist who specializes in upper extremity disorders.  It has really worked wonders on me. He starts off with ultrasound, and then massages the area.  After the massage, he stretches and then ices the area. I do stretches multiple times a day, just whenever I need it. It took about 12 weeks for the long thoracic nerve palsy to improve enough to start working out again.

Wow Teran!  You've come from not being able to lift a gallon of milk, and having numb, weak arms to going back to working out and running?!! That is so great.  How did you do that?   I mean, do you think it was just the medical treatment and physical therapy, or are there other factors you think contribute to your doing well?

First of all, I don't think I would be able to maintain an active lifestyle if it weren't for the surgery and physical therapy.  I also wonder if having surgery soon after the diagnosis of TOS was helpful in my recovery.  Secondly, I believe I am a 'half glass full' kind of girl. I have been through many adversities in life and this is definitely one of them.   I have seen different ways the Lord has used TOS in my life, and while it has been hard I am thankful.  In addition to my faith, I have quite a bit of family and friend support.   Lastly, I think it’s important to take one day at a time.  None of us know what tomorrow will bring so we do what we can with the time we have.   

Any thoughts or advice for others living with TOS?

TOS is hard.  We all struggle in different ways and to different degrees, but we share a common bond.  

I do believe that with TOS comes a huge loss that needs to be grieved. 

 I also believe in getting plenty of rest and moving my body. We can't all do the same type of physical activity, but it's important to find an activity that you enjoy. There may be some days you can't do it and may have to rest or find something else you enjoy. I love setting goals, and one of my post surgery goals was to complete a marathon. I tried twice before and got injured both times, but was determined to do it. I found a great run/walk program by Jeff Galloway http://www.jeffgalloway.com/about/ and used it to complete a marathon in April.   One of my favorite quotes is; 'You are not in the waiting room of life.'

I was at my son's flag football party last weekend and was about to start scooping ice cream for 30 people. I asked a friend who happens to be a physical therapist if she could do it for me. She said (no ill intent at all) that I could complete a marathon but couldn't scoop ice cream? I said, "Yep. That's right!".

I may not know or understand why I have gone through certain things, and may never know this side of Heaven. However, I firmly believe that God has used various trials in my life to shape and mold me into who I am today. If I am able to walk alongside someone who is undergoing similar experiences or help in any way, it is good. And I am grateful! I believe we are meant to be in community with one another and it can look different to different people. 

It can be very meaningful for someone to be able to say, 'I understand what you are going through, and I am here for you.'

~ ~ ~

Thank you Teran.
If you have comments or questions for Teran, feel free to email her.

Gentle hugs~

They're baa-aack!?

One member in our family of three with TOS - the daughter- has been experiencing recurrence of pain. We obtained updated xray and MRI recently, and requested a copy on disk to take home.
Our mouths dropped open when we saw what looks to us to be a fully formed, regrown first rib...which was *removed* years ago.
*We are not radiologists, with no experience reading these test images....but it sure looks like the rib grew back.
We are flabbergasted.

**Update--We got a copy of the xray that was done immediately after rib resection and compared it to the new xray, and sure enough...the whole rib is now present where it was once just a stump.  Not cool.
I'll post the pics after our second opinion consult.

We are told it takes forever to get into the specialist we are waiting to hear back from for a second opinion on the situation. When we know more, we will let you all know about the next step in this TOS journey.

Some interesting information I've run across online about rib regrowth...

http://www.drbrantigan.com/physician/multidetector.htm
"... the first rib has regrown..."  (shown in CT scan pictures).

From this article- http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1849872/
"...patients with recurrent TOS symptoms for removal of rib remnants and regenerated fibrocartilage..."

"The primary technical factor involved in recurrence seems to be incomplete extirpation of the rib during the first procedure. If a rib remnant is left (as most surgeons outside of our group do), osteocytes, chondrocytes, and fibrocytes grow from the end of the bone and produce fibrocartilage and regenerated bone that compress the nerves."  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1849872/

Cervical Ribs-Do they always cause TOS?

Since my son, daughter, and I were diagnosed with cervical ribs and Thoracic Outlet Syndrome, I have read statements regarding cervical ribs rarely causing problems that made me question their validity in light of my own experience.

Statements like: From the UCLA Vascular Surgery website-
"Some people are born with an extra rib called a "cervical rib". Although most often this causes no particular problem..." 

Or this statement from The Journal of Bone and Joint Surgery-
"It is estimated that only 10 per cent of cervical ribs cause symptoms."

Reading statements like those causes my one eye to squint as I mutter "yeah, right", sarcastically.
It's tough for me to swallow that's the truth when three out of three in my family with cervical ribs have developed TOS.

But then I got to thinking...

It's true that for most of my own life, I didn't even know I had cervical ribs, not until my early thirties, and I lived just fine.
I had no arm pain. I participated in sports. The cervical ribs were there but caused no problems for me.
Some neck issues started in early adulthood, and then a car accident several years ago, and I've not been the same since.

I've read that TOS can develop in previously normally functioning people after a traumatic event such as an accident or a fall.

For my kids, they were also born with cervical ribs but we had no idea. They were normal kids and rode bikes, were active and had no symptoms...until puberty kicked in and they each went through a growth spurt around age 13/14. Then their arms started aching just from walking around. We went to the doctor and learned about the ribs and TOS.

I have experienced living with cervical ribs and having no problems, the first 19 years of my life.
I've also experienced painful physical issues that have developed because of them.

Recently it has been hard for me to believe people with cervical ribs do not have pain or function issues. I think living with chronic pain makes you forget what it was like to not have the pain.

But looking back, I see that my kids and I all lived just fine, for a time, with our extra ribs.
And then we didn't, which began our journey with Thoracic Outlet Syndrome.

So when someone asks me if having cervical ribs always means you have or will develop Thoracic Outlet Syndrome, I say, I'm no medical expert, but I've read that not everyone does. Three out of three in our family have, but lots of people don't have problems with their cervical ribs...so I'm told.

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 daughter

As promised, the interview with the daughter about her continuing journey with TOS.
For some of the backstory, check out this previous post.  It is now seven years since her one-sided rib resection surgery.

So, daughter, how are you feeling lately?
"Lately, I've been having some pain (in my resected arm) and I'm not sure why.
This happens to me occasionally. I haven't been to a doctor about it in over six years, so it's probably time for a check up in the near future.
I don't want to discourage anyone else from surgery by admitting that I still have pain sometimes, because having that surgery was the best thing I could have done. I'd do it again if I had the symptoms in the other arm or (continue to have them) on the same side in the future."

What do you remember about your rib resection surgery?
"I had my surgery done a month before I turned 13. I suppose I should have been more nervous about surgery than I was. But, I  had just witnessed my older brother go through the ordeal a year earlier.

He came through it fine, so I guess I just assumed that it would all be alright."

"I had one nurse who was relatively new, and tried to take my blood pressure in my surgerated arm once or twice. (*I stopped them!) Other than that, it was all fine. Not scary or anything."

*In this photo, two hours after waking up from surgery, she has a keyboard and is sending emails to her friends. The resected arm side of her face droops. Her brothers face also drooped postop. It went away in a few days. She has an automatic morphine pump in her side. She went home with it the next day and it lasted several days. A wonderful thing.

"It took me a while to recover and stop having pain in my arm. Even while I was still having arm pain (postop) I didn't regret surgery. The pain was 10x worse before- constant and terrible.

Even though it took me about a year to stop having pain (after surgery)- it wasn't the same pain as before. I think it might have been due to my nerves being messed with, or agitation caused by physical therapy? I also had a biking accident two months after surgery... oops."

*Yes, eight weeks post-op, she was feeling good and riding a bike. Cringe.

What do you remember about physical therapy?
"Well, I think it's necessary to help build back up movement and muscle and make sure that you don't heal all frozen up. But I think at times, my PT's pushed too much and flared up symptoms. I'm not sure they were used to working with people with TOS?"

Do you feel TOS is affecting your life now, and if so, how?

"It still limits me. I've had to learn my limitations for doing things.
Had to learn to explain my "mutation story" or "extra bones" to people so that they wouldn't hug me too tight, or hit me in the shoulder playfully, or heaven forbid- try and give me a neck rub!

My armpit/back of my arm is numb/hyper sensitive now. If I ever bump into things or get hit there, it feels like I'm being stabbed with needles. I think a nerve of mine was affected a bit in surgery.

Also, carrying purses hurts my neck. I try and always pull through parking spaces because it hurts to crane my neck to back up. Washing my hair takes a long time, and I wake up every night with my arms asleep or in pain because they weren't in the right position.

I use heating bags a lot on my neck when it hurts. I use a nifty little clip for my seatbelt when I drive- which helps a ton! I even bring it with me when I ride in other people's cars."

Ever get pain in non-resected side?
"I've only ever had TOS-y pain in my non-resected arm a handful of times. If I ever started to get constant TOS pain in that arm, I would definitely have surgery.

However, I would definitely glean more knowledge about different ways it can be done, like resecting the cervical rib, or having the surgery above the rib instead of under the arm.

I'm just curious if other people's experiences are better with different kinds of surgery. The only people I know (you and my brother) have had the same surgery and seemingly the same side-effects, so...yeah."

What advice would you give someone new to TOS?

"Learn about the monster- learn what makes it tick. Your life won't be the same, but you will only make it worse if you resent and ignore it and try and carry on like usual.
But don't be discouraged!
If you don't know TOSers, get to know some!
Get advice and gain knowledge about your options, and find people you can empathize with.

I was fortunate I had two other people to go through this with."

~ ~ ~

*I hadn't thought of feeling 'fortunate' that all three of us have to go through this TOS journey... interesting positive outlook on our situation. We do have each other, like a mini TOS Support Group.

Guess that does make us oddly fortunate :)

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.

Invisible Illness Week - September 10-16, 2012

TOSers know how frustrating it is that people can't tell you are in pain just by looking at you.
We know all about that pat on the back, or the too tight hug from a well meaning friend, or the awkwardness in having to go through the long explanation of what your physical problem is, knowing they will not understand.
That is why I believe in the cause of the site - www.invisibleillnessweek.com - You can search there for articles relating to your experience and find support. I submitted an article under the My Story section about my own experience. Please go there and support the great work they are doing bringing awareness and education to the issues we face with the invisible illness of TOS.

TOS...it's complicated.

If you've happened to wander upon my blog, be sure to take a minute to back track and read about the beginning, about how my kids - son and daughter, have the same condition and how it has affected our lives. I blogged my way through healing from rib resection, and my continuing journey...with TOS.

The Labels along the side may be of some help if you are looking for somthing in particular.
I hope you find some helpful tidbits here.
Feel free to email me if you have a question.
"It is what it is."
Life moves on, even with TOS.

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.