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~

Gentle Hugs T-Shirts and Pins are now available!

Many thanks to fellow TOSer, Aubrey, who designed this TOS awareness logo with the Gentle Hugs message!! You can order it on a pin, a shirt, or other items here -http://www.zazzle.ca/gentle_hugs_tos_awareness_womans_tee-235060560888694921

I don't know about you, but I will be wearing this shirt to any family gatherings from now on!

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~

Mindfulness to Reduce Pain

Interesting article...
http://www.npr.org/blogs/health/2011/04/08/135146672/even-beginners-can-curb-pain-with-meditation

The Pain of being a Redhead

Researchers believe redheads are more sensitive to pain because of a mutation in a gene that affects hair color.

"The MC1R gene belongs to a family of receptors that include pain receptors in the brain, and as a result, a mutation in the gene appears to influence the body’s sensitivity to pain. A 2004 study showed that redheads require, on average, about 20 percent more general anesthesia than people with dark hair or blond coloring. And in 2005, researchers found that redheads are more resistant to the effects of local anesthesia, such as the numbing drugs used by dentists."

Full NY Times article here.

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.

Neuroma-interesting read...

"A Neuroma is a thickening of nerve tissue that can occur in various parts of the body. The thickening of the nerve that defines a neuroma is a result of thickening and irritation of the nerve. This compression created an enlargement of the nerve, which may lead to permanent nerve damage."

"Work by Wall showed that even when no obvious nerve damage occurred, any trauma could lead to disruption of nerve axons. This disrupted axon will then produce axon sprouts. These sprouts try to link up with each other and heal the nerve. If they do not link up with another sprout, some die and some lie there; if a collection lie there together they are known as a neuroma. However, it is clear that sometimes there are not enough axons to form any anatomical structure and this is a microscopic finding. However, this axon is exquisitely sensitive to noradrenalin, and any noradrenalin released in the area produces intense stimulation of the nerve, producing severe pain. This is made worse by light touch, stress and movement."

*My apologies to the author of the quote above, I am unable to find the source of this quote-but thought it was important to share.

The Biggest Hurdle

http://saveyourself.ca/articles/personal-growth.php

"... the real challenges faced by someone with chronic pain are mental. Mental state is the biggest modulator of physical pain. Things hurt more when you’re stressed or sad, and the increased pain makes you both stressed and sad. The way out of this vicious circle is a wholesale change to how you perceive fear, suffering and setbacks."

My assessment of physical therapy, so far.

My ear and jaw pain was gone for two days. I say 'was', because right after going to p.t. the other day, the pain was back. Seven hours later, the feeling of a knife in my ear, head, and upper trap is still there. Add to that a discussion about nerve gliding and working on the stiffness in my neck/spine leading up to eventually doing the arm bike (which I loathe from previous experience) and the rowing machine to gain strength. A wall went up in my mind as soon as p.t. mentioned this, even though he tried to talk me through it.
"I wouldn't take you through what we've been working on to calm and normalize things just to throw you on a machine for you to flareup, we're going easy. But still, we are headed that direction."
I'm so nervous about that. I'm sure it showed on my face.

He patted me, said the return of the pain was just temporary.

He talked to me about the pain cycle a bit.  Using E-stim is supposed to help temporarily break that pain cycle, hopefully long enough to give me a chance to be more active, gain some strength.

My assessment of p.t. at this point-
Sometimes I leave p.t. in more pain than I went in with, which is a downer.
Having that pain several hours later, and the next day- is a bummer.
Feeling like I'm at the mercy of the pain is depressing.
I want to believe things will get better.
Wondering if maybe it -"just is what it is", and I should stop torturing myself.
And then...I wake up one day without pain, and that is a good day!

Plus, I have to admit, my ear, jaw, head pain is not constant like it was for a long time. Since starting p.t., the pain comes and goes now-with no predictability, but its not all the time--a definite improvement.
So I'll keep doing all the exercises and stick with p.t.

I hope my experience with therapy will be helpful and give some hope to my fellow TOSers...because we TOSers need hope.

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~

Hope

Two TOSers Meet for Lunch - Guest Post - Dianna

Recently, I had the chance to meet up with a fellow TOS-er, Dianna, who lives in my area. Very exciting! We've chatted several times since she saw the listing I posted in a 'Recommended Doctors' file in a  facebook TOSsupport group for the surgeon who treated myself and my two kids.  

Getting the chance to swap stories and commiserate with someone who really gets it, well it's just really refreshing to not have to explain TOS, or be defensive, or put on an I'm fine face about living with TOS. Being able to just be honest about the crap that living with TOS brings to your life is therapeutic, especially when some people in your life can be dismissive or don't even take the time to try to understand what you are going through because you don't look sick.

It was a great lunch. The time flew by as we talked about our TOS journeys. It was interesting to recognize the same neck rubbing, arm movements, pointing to the same places on our backs, arms/armpits, and heads that hurt. 

Lots of head nodding in understanding and agreement as we listened to each other. The only thing I'd change is cushier chairs. We were both sore the next day from driving 40 min one-way, and from sitting for almost two hours in those stiff chairs. If you live with TOS, you understand.

I'm really glad Dianna agreed to be interviewed for today's guest post. 

Dianna developed TOS without having cervical ribs. Many fellow TOSers can relate to her situation. Your life was going along pretty well, you're working hard, or playing a physically demanding sport, and pain develops in your arms, shoulder blade, hands, neck, head, chest...you can't shake it. The ache, swelling, throbbing, stabbing becomes relentless. You get referred to several different doctors who have different ideas about what your problem is, and eventually one of them tells you " you have TOS", and that becomes the beginning of a journey.

Here is a little of Dianna's TOS Journey...

1. What type(s) of TOS do you have? 

I have NTOS. (neurogenic = invoving nerves)

2. What contributed to TOS symptoms developing for you? 

Long work hours with heavy lifting, repetitive overhead work, working in unfavorable body positions. This first picture was from before TOS changed the path of my life. I was physically fit and in great shape. The prime of my life and when plans for the future looked pretty good. Little did I know how much would change.  I'll never be able to do that type of work again, regardless of if I ever recover or not. It would only put me back in the TOS cycle again. Not that we ever really get out of it. I really believe it's for life.

3. What treatment have you had?

I've had trigger point injections, three rounds of physical therapy, and two surgeries. Bilateral rib resections and anterior scalenes removed.

4. How are you now?

I still have a lot of symptoms. 

Notably, my hands turn white when raised in an overhead position, arms still tire, and still have a lot of nerve issues especially if I do any one thing for too long. Examples: sitting, standing, housework. 

This picture was taken right around the time I was first diagnosed. This one reminds me of how much the little things like holding a baby really mean. After this past weekend trying to hold our grandson my left arm feels horrible. It was worth it though. :)

5. What advice would you give someone new to TOS?

Advice I have for someone new- Talk to your doctor right away, research as much as possible, knowledge helps, be presentable to doctors. Write down all your symptoms for the doctor. Don't take no for an answer. Self advocate.

Please let Dianna know if her TOS story is helpful to you, or if you have any questions/comments for her.

I encourage my fellow TOSers to connect, talk, share, encourage, commiserate, vent- in whatever way you are able. In person is fun, via skype, chatting online, email are all great options. One thing is for sure, for those who are on this TOS journey - it sure helps to have others who understand to talk to about it.

Gentle hugs~

5 Year Ribaversary

I have not blogged about my TOS journey recently because I've been going through the rounds of doctors, once again. I was hoping to have more to report by now, but I'll get you caught up The Days of My TOS Life. I have a new family doctor, so I had to fill him in on my history and recurring symptoms.
 He sent me first to a new pain management doctor-who gave me a list of my treatment options: 1. Do nothing. 2. Radiographic workup (tests & scans). 3. Physical management, (physical therapy, TENS, OMT-osteopathic manipulation, home exercise program). 4. Medication management-(nsaids, antidepressants, muscle relaxants, anti-convulsants, opiod, topical). 5. Epidural steroid injection. 6. Medial branch block. 7. Radio Frequency Ablation (burn the nerve endings). 8. Spinal cord stimulator, implant. 9. Surgery. A pretty depressing and scary list. I left that appointment feeling pretty deflated.

I asked for trigger point injections with lidocaine, one at base of my neck, and one where it feels like a knife it sticking in my back. The doctor informed me there is a risk of lung puncture with the deep shoulder blade injection, so I chose to just get the neck injection, which hurt a lot for two days after, then helped relieve pain for about 10 days. It's back to the usual tense, sharp pain now.

 I revisited my new family doctor, and after chatting, he seemed to agree that pain mgmt doctor was not the best choice for me. I was prescribed gabapentin and referred to an ENT-ear nose throat specialist. I'll backtrack a bit here to explain why he referred me to an ENT. The most painful symptoms that led me to being dx with TOS and having rib resection were neck, jaw, ear, head, arm, upper back/shoulder blade pain. Surgery was successful in alleviating the arm pain for a while, but most of the pain has returned.

So, the ENT examined my ear, numbed my nose/throat and scoped my nose throat-took pictures even- all normal.
He thinks I feel a lump when swallowing because my muscles are very tight, spasming, and there is a hyoid bone in your throat and my muscles are too tight around it. The ENT's thinking is that my symptoms are possibly from having muscle removed when the rib was resected. He referred me to a physical therapist who has had great results with TMJD,  and head/ neck injury patients.

 My therapy assessment was a week ago. The therapist seems knowledgeable about TOS. He believes exterior muscles in my neck are overcompensating, and interior muscles are lazy and not working properly. He also mentioned that I healed post op with tight pecs and rounded forward shoulder, which pulls on muscle in shoulder blade. (It IS all connected!) He commented he thinks the origin of my pain may be located at the level of the cervical rib, where the wad of upper trap muscle is that gives me fits . I decided to hold off on starting the gabapentin until I saw what p.t. was going to be like.

I had terrible arm pain for about 12 hours after the assessment. The first therapy session was 24 hours ago, and during therapy all was well...lay on heat, a little work in/under shoulder blade, some massaging type work on neck and head. I was given my first 'exercise' to do at home. I am to lie flat, and slightly tilt my head up and down. The tilting movement does not start in the neck-at the base, but up higher. I'm supposed to barely tilt my head up and down a half inch, but focus on the movement being up higher than usual. (I wonder how many calories that 'exercise' burns?)

I left feeling good. I ran an errand, and on the drive home an hour later, I pulled over to pop 800 mg ibuprofen and cried the rest of the drive home because my arm, neck, ear, back hurt SO much. The paring knife in my back changed to a meat cleaver, and shooting electrical jabbing pains were up my neck and head, down my aching arm.
For me, when my pain level ramps up past 4-5, my brain does not function well. I'm grumpy, touchy, unable to make clear decisions because all I hear, feel, see is pain-pain-pain-pain. It's like the pain short circuits my brain. I hate that.
I am curious to see what the therapist has to say about my reaction to the first session. I have gone to many rounds of therapy, chiropractors, massage therapists. And I've made myself stick with each one for weeks and months, pumping machines, using thera bands, stretching, enduring myofacial stretching (painful!) hoping for positive results. Mostly, that all just caused me a lot of unnecessary pain.
That said, I have hope that this p.t. knows TOS and the accompanying muscular issues, and may be able to help me.

Now, I just have to get past the mental hurdle of the fear of increased pain (from my past experiences with all the p.t.) so the current therapy stands a chance at being effective.

For me, that includes choosing to have hope that life will get better, that pain will decrease, and function will improve. I will do my best to fight off the urge to feel like a TOS victim. I will continue to look for ways to be a TOS survivor....along with all my fellow TOS survivors. I love and appreciate you all for your genuine understanding, and the way you show compassion to others who are hurting because you DO understand.
 My heart goes out to each of you as we live this TOS journey together.

Gentle hugs to each of you~

So many questions

It was a lovely morning, sipping hot coffee, doing some reading, enjoying the quiet. Then I stretched. Stretching is an autonomic response, like yawning, tough to control when the need hits you. I moved the wrong way and muscle grabbed onto nerve on left side of neck at the base and pain level shot from the usual 1-2 I'm used to, to a 9, which makes my brain freeze. I can't think straight, I'm in restless panic mode, even though I've been through this locking up so many times I know what to do...get heat pad, swallow muscle relaxer & pain pill asap, hot shower, lidocaine patch, try to relax, even though with every breath I can feel muscle raking over nerves, muscle spasming, tightening, stiffening.
I pace the kitchen floor holding my neck, massaging, trying to push the cervical rib forward hoping that will stop the sharp knife in my back pain, which usually works for minor pains, but not this time. I need my husband to tell me to get in a hot shower, because I'm stuck in a panic loop, pacing and muttering "I don't know what to do...I don't know what to do..."
I do all the things I know how to do to try to alleviate the pain, but still it jabs, burns down my arm, throbbing. I pick up my cell phone and lying on the couch taking shallow breaths, I tap out a plea to my fellow TOSers...asking what helps them with their pain. They respond with helpful ideas, encouragement, even possible food choices to reduce pain. Pickles...who knew!?
Still frozen today, had to call my job to let them know I can't work tomorrow, again. I've been thinking maybe I am not reliable enough any more with this unpredictable cloud of TOS hanging over me. I think I have a lot to offer, but I never know when symptoms might shoot from a 2 to a 9. The brain-lock I had yesterday scares me the most, that I just couldn't think straight overcome by that sudden pain.  Lots of thoughts and questions running through my tilted head today.
Looks like heat pad on a timer has been off a while. I'll turn it back on and go think some more. Much love and appreciation to all my fellow TOSers.

TOS ~ Life XIX

Pain and the weather

Today it is quite humid in the Midwest, USA.
My hands are swollen, arms, neck throbbing the moment I got out of bed this morning.
I'm getting a slight bit of tingling in my hands.
The skies are grey, rain and thunderstorms are in the forecast.
I would love to understand how and why weather affects my symptoms.

Today makes me want to move to the North Pole.

http://www.intellicast.com/Health/AchesPains.aspx

Mini update

I have several things on my 'list of things to try' to see if they bring some TOS relief.
I tried a couple recently.

I thought massage would maybe help loosen tightness.
It felt great while I was getting the massage, an entire hour. The massage therapist was diligent in avoiding my neck areas that cant take pressure...but on my drive home my right arm started burning, aching, and three days of that are enough to convince me to stay away from massage.

I also got some trigger point lidocaine injections in my neck, and for about ten days my arm pain was GONE and I was singing my Dr's praises. But I overdid it last weekend doing yard work, and the arm pain has returned. Maybe the shot wore off? I had a trigger point injection in the left side of my back two years ago and that pain has not returned since, so I'm disappointed this last right side neck injection isn't helping as I had hoped. I will ask about more injections, maybe Dr. didn't hit the right spot?

Also, the ABM sessions are on hold, for now. I plan to return, but I've had some flare up's of pain lately, and my ABM therapist says the brain is not available to learn and change when it is locked in dealing with pain. So, I need to address that first and then I could go back to those sessions.

So that's three things on my 'to try' list that are not panning out as I had hoped.
Next on my list are:
Acupuncture, more trigger point injections, lidocaine patch.

I'll let you know how those work out.

So how are things? Four years later...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

 

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

Flareup's are so inconvenient

I recently returned home from traveling over a thousand miles to see my grandsons, sixteen months and newborn. It wound up being an extended trip with lots to do. Unfortunately, I did not listen to the TOS advice I give to others, nor to the signals my own body was giving me.

I over did it.
There was so much to do, much that I do not normally attempt.
Lifting, carrying, bending, reaching, playing.
I just couldn't resist. It was all such fun!

Until that darn pokey, pinchey, pulling, needley, burning, jabbing, searing pain from my ear and neck down through my traps and into my arm. It got really bad.

A doggone flare up.

Just when I needed to be able to make the most of what little time I get with my precious little guys who are growing up so far away, that dreaded irritation and pain surged intolerably.

I had to employ every trick and tool I've learned to fend off a plunging depression.
I admit, the pain pushed me to an emotional edge. I vented a bit, with tears.
Pain has a way of purging the truth out of you like nothing else can.

I was sad, knowing I needed to take it down a notch and slow down, even though I didn't want to.
But I also knew I would be no good at all for anyone if I didn't take care of myself and pay attention to what my body was telling me.
I heated up my microwave rice pack, dropped in a few drops of lavender essential oil, took muscle relaxer and pain pills, got out my mp3 player and listened to some Ease Pain sessions, then some light piano music.
I had to make myself rest.
I proposed my problem to the facebook TOS group. The responses were wonderfully warm, supportive and helpful. Exactly what I needed, a word from people who understand because they've been there.
"Get down on the floor. Let the kids crawl in your lap, no lifting, do the best you can and let the rest go."

That was wise advise indeed for this TOSer.  I tried to heed the advice, though it was really hard for this new grandma to always comply.