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~

TOS Resolutions for the New Year

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

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

*Try acupuncture

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

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

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

*Essential oils-research, try.

*Try Biofeedback

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

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

*Kick TOS in the butt

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

*Live well!!

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~

My Physical Therapist Says Part 9

Several weeks ago, I asked my physical therapist for more explanation of how working to improve *strength* will help my TOS situation.

With all the chronic muscle tension and spasm I've had for years, how can I work on strengthening- don't I need to *relax* the muscles?
PT said -"Think of it this way- compare muscle to a rope. You pull on the ends of the rope and the outer fibers are stressed and break.  Over the next couple days, as the recovery and healing takes place, is when you actually gain strength. You don't gain strength as you are stressing the muscle, but afterward, in the repair and recovery. Trust me on this, strengthening and stability are the keys to turning things around for you, but it's going to take time. It took a lot of time for you to get to this place."

I asked about how nerve pain could be reduced by strengthening when I am tensioning the muscle that spasms and tightens its grip on the nerve?!

P.T.'s response-"In a sense, you're right in your thinking; however, your nerve can be hyper sensitive. You use both your arms but the right tires faster and is more painful than the left, (my left arm is usually fine). It seems the nerve is maybe being grabbed by muscle more on the right side.

This journey is about the long haul for you not a quick fix. Keep going. 

You will have days when it flares, and it hurts, but keep going.

You have been very motivated and done the right things to affect positive changes, keep going. 

Things are really very different for you since the time you started here, your tissues have changed. TOS is a really difficult thing for P.T.'s. We have a hard time with that particular disorder, so all the things you have done on your own to change your situation has helped tremendoulsly. Keep going."

I've been trying to sit on my big exercise ball, balancing without touching the floor or the ball with my hands or feet. As soon as my feet leave the floor the nerve pain kicks in and gets worse the longer I stay there.
I asked P.T. why that happens.
"It requires core strength and you're challenging that with what you're doing balancing on the ball like that. Twenty minutes is too much; of course it would cause your pain to flare up." (which is a bummer because it's kind of fun).
I told him the fact that the pain kicks in the second I start balancing makes me think of the muscle that was removed from my neck, and wonder if that pain will ever really go away?
Response-"I dont know, but you are gaining strength, and your tissues have changed so much-keep going."

I hope all my fellow TOSers can glean some encouragement to *Keep Going* on your own TOS journey.

As always, Gentle Hugs~

TOS update - Exercise, Diet and Supplements...oh my!

Lately my TOS pain (nerve pull, sharp, aching, throbbing, a little twitchy, from base of my neck, down arm into hand, up neck into head) comes on sporadically, aggrivated by driving-especially when it's windy, or if I've had bad prolonged sitting posture (head forward).
The jaw/neck/head pain that I believe is partly a result of having anterior scalene muscle removed when my first rib was resected...that pain was better several weeks ago, but its been ramping back up lately. I think the cold weather is partly to blame. And I still feel like I want a kick-stand for my head by the end of most days because my head feels heavy, weaker, and unsupported on the resected side. I actually do prop my head up with my hand sometimes.

I'm down to p.t. every two weeks, for a few more visits, then I'm on my own for a bit. I'm curious to see how that is going to be. I'm hoping I can stay motivated to keep at it through the fall/winter seasons when all I really want to do is hunker down, read, or hybernate.

Here are couple new p.t. exercises I've been given to work on at home-

1. Roll exercise ball up wall with forearms, 20-40x
I don't roll up quite as high as pictured. When I first started doing this TOS symptoms started kicking in around 6 reps. After a couple weeks of doing this, I don't feel the heavy-tingly-arm ache until about 15 - 20 reps.

2. Push meduim size rubber ball against wall with back of head, turn slightly right and left while pushing.(center pic)

I've been walking 2-4 miles most every day, even on flareup days. I figure I'm going to have pain if I sit on the couch or if I go for a walk, and I've found I sometimes have less TOS pain after walking(sometimes more). I'm even ready for winter with a manual treadmill.

My diet remains pretty simple, and I DO believe losing weight and cutting sugar is helping reduce my pain levels tremendously! I  just eat real, whole foods, nothing artificial, no white flour or sugar, lots of water and green tea, and a handful of anti-inflammitory supplements morning and night.
Morning: Vit D, Vit C, Fish Oil, Tumeric, B complex, CoQ10.
Night: Magnesium Glycinate, Mag citrate/aspartate/maleate, Calcium citrate.

Other things that I've found helpful in alleviating some of my TOS pain- setting a few goals, volunteering for an organization weekly, helping others, continuing to challenge negative thinking and replace it with more positive and encouraging thoughts, getting involved in a suportive community/regular group meeting, attention to my relaxing/sitting posture, asking for what I need.

Things I am considering; injections of some sort into the back of my head/neck/upper trap on one side, and acupuncture. I looked into CBD oil, if it were not so expensive I'd give that a try. I am glad to be off all prescription meds currently, even ibuprophen. However, the pain ramps up to 'terrible' status 1-2x week, and it is moderately painful for several hours a few more days each week.

I do have some days virtually pain-free, but I'm still having enough pain that I'm wondering about going back to some type of medication. I need to be able to function and live and it's still hard for me to plan to do too much.
I sat for 1 hour for a college aptitude test recently, and half way through I was hurting and wondering how I could ever sit through a 2-3 hour class 2x week?! But I'm still signed up for Winter 2015...I won't know unless I try, right?!

So thats the current state of TOS in my life. I keep doing what I think may help, and stay open to any new ideas.

My fellow TOSers- Don't hang in there...and Gentle hugs~

My Physical Therapist Says - Part 7

I went to a recent physical therapy appointment feeling a bit discouraged, dealing with an arm pain flareup.
Here's part of the pep-talk my physical therapist gave me-

"This is just the ebb and flow of life. As you work to get stronger, things are going to happen to challenge you; its ok. Hang in there."

*Insert here the sound of a needle scratching across a vinyl record, which is what I heard at that moment in my head.

I told PT that 'hang in there' is possibly the worst thing you can say to encourage someone with Thoracic Outlet Syndrome.
Think about it- arms, neck, pain, hanging..."hang in there"?!
We have commiserated about this on the TOS facebook support group; it's not a great admonition for someone living with TOS.

As I was leaving pt that day, I hear from across the room- "...and Robin, don't hang in there."

My fellow TOSers will understand when I say this; that may be one of the most thoughtful things anyones ever said to encourage me.

To all my fellow TOSers-Don't hang in there & Gentle Hugs~

My Physical Therapist Says Part 6

I asked my PT what others living with TOS should look for in a physical therapist. He said no one else is going to do things exactly the way he is treating my TOS issues because everyone has different training and approaches. However,  if you look for a physical therapist who focuses on head and neck injury/trauma, that should be a good place to find someone knowledgeable about TOS. A main source my PT utilizes is the book Explain Pain, Butler, Moseley and information by noigroup.

Standing behind me, poking around my neck (cervial rib), shoulder area, PT commented-
"Your tissues have changed."
With a quizzical look on my face, I asked what that means.
Response-"When you first started coming here here I would just barely touch you here and get a response, it didn't take much. But your tissues have changed; the tone is much better, because you've been doing alot of different things to affect that change."

I mentioned to my PT about my daughters resistance to trying physical therapy (even though she really needs to). Response, "Well, I'm glad you're on board. You are in a good place to say to people living with TOS, "Hey, there's hope...it CAN get better."

My Physical Therapist Says...Part 6

"Your body wants to move, its good for you to move. Garden, be as active as you can - without blowing up symptoms." 

I asked why when I do this-(arm up and down, painting motion) does my ear hurt?  Response-"because the pain is not coming from your ear its coming from your neck muscles."

"They've done MRI of shoulders with torn rotator cuffs on people who have full function. Others  who've been told they have torn rotator cuff but normal MRI experience pain and limitation. Being given a medical dx can contribute mentally to pain."

"There will always be some people invested in their negativity and pain. But you can chose to focus on the positive and keep moving gradually forward."

I asked, if I lean into the pain, tilt head toward pain, fold arm up, is that a bad habit? Response," it takes the tension off the muscle and nerve, so temporarily, no thats not bad." (note-temporarily).

Gentle hugs~

Direct Consumer Access to Physical Therapy

"Legislation has been signed into law allowing patients in Michigan to go directly to a physical therapist (PT) for evaluation and treatment without a physician’s referral. The legislative victory now means that all 50 states and the District of Columbia allow for some form of direct access to PTs for evaluation and treatment."
www.apta.org/PTinMotion/NewsNow/2014/7/1/MichiganDirectAccess/

My Physical Therapist Said...Part 5

"It's hard to go slow, to progress at a slow pace. Not everyone can handle that."

I told pt about a stressful life situation I'm having to deal with currently. PT said "These little tests are good for you. Not that the situation is good, but life happens. That is the point of doing all this pt, so you CAN live your life and handle these things without blowing up into a five-alarm flareup."

"For a long time you were walking around like this (hunched, arm bent up), so for you to be doing the stretches you've been doing is great."

"Honestly, a big part of the change you're seeing is from changing your diet, losing weight, moving more, because your cells are turning over and you're rebuilding with new cells all the time. You're coming at this from all angles, which is what you need to do."

I mentioned to pt that someone made a discouraging remark to me when I showed them some of the exercises I'm doing. (They said I was doing old people exercises and not real therapy on machines lifting weights).
PT's response was -"Everyone has their own journey-from point A, to B, to C, and so on. Its not going to look the same for everyone. You've come a long way since you started this. Don't let stuff like that get to you, just keep moving forward."

Part 6 soon...gentle hugs~

My Physical Therapist Says...Words.

"Words are important. Language is important. It can help people change the perception of their situation. Sometimes the language used by medical people paints a picture that is not helpful, like: slipped disk."

Here are some words and phrases P.T. uses often...


Actual physical damage.

I believe you.

Healing phase.

Process

Gradual

Perception

Dilligence

Finesse

O.k.

Journey

~ ~ ~

Gentle hugs~

My Physical Therapist Said...Part 4

 I asked p.t. about my cervical rib being the source of my pain and if I am just wasting my time fighting against it doing p.t.  He asked how my symptoms are on the left side, which has a large cervical rib also. I rarely have symptoms on my left side, which he said indicated to him my pain is not with the actual cervical rib but the pain is of another nature and that there could still be improvement.

 I asked about my TOS pain issues being years in the making and how long would it take to work out of this pain cycle? Response-That is a valid question, I don't know.  I asked if it might take years? Response- I don't know, maybe (which had an inflection to sound more like probably).  But then what are my alternatives at this point?
* Give up, live with the pain, be limited...like I pretty much have been the last few years.
* More surgery, with all of those uncertainties and possible complications.
* Stick to the plan and try to do what I can to change things.

It's good you have the blog, online support groups. Your own kids deal with TOS, so you have to stick together. You're in this together.

In explaining the brains involvement in producing pain, he told me about having to remove a sliver for his young daughter. The first time, was a breeze. Second time, same tiny sort of sliver, but her reaction was dramatic. Why? Because the brain remembered and produced that response for reasons related to emotion and things other than the actual physical damage.

When I tell him moving certain ways causes pain...
Response-I believe you.

It's o.k.

Part 5..soon!  gentle hugs~

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~

My Physical Therapist Says...Part 3

 

After you do these new moves/exercises, when you flare up a little, don't get discouraged, hang in there. You'll get there. It may take quite a while for you to get the hang of it, you've been set in this pattern quite a while.
We want to retrain the muscles and the brain, disengage certain muscle from over firing and engage those deep muscles that for whatever reason, (probably trauma, whiplash, surgery) stopped working.

I expressed concern about the pain I feel (up my neck, sharp into base of neck) when doing shoulder blade squeeze exercises, because my surgeon said I should specifically avoid heavy lifting, pulling down, arms up or extended repetitively. I worry that I'm causing compression because of what I feel when I do the exercise. After a moment of silence, the response was, "...sometimes, when you are told something by a medical professional, a doctor, its not necessarily for the long term, but for the healing phase. Honestly, your painting a room (which I did last week) is way more motion than that exercise, so I wouldn't worry about it."

When I asked if being on traction diminishes ear/neck/head pain, does that mean there is something pinched in my vertebrae? "No. Your system, your nerves, are overloaded; like they are being irritated and rubbed by muscle fiber, but that's different from a nerve pinch."

Quite often he says: "It's o.k."
(sometimes I want to rip my crummy arm off and hit him with it when he says that, because it does not feel o.k....my fellow TOSers can appreciate that).
I do appreciate the reassurance, it's just been so many years of this deal that sometimes it's hard to trust that it is in fact, o.k.

That's good, you're on Healing Road now!

Part 4 soon, Gentle hugs~

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~

Book Review - Explain Pain - Physical Therapist Recommended

Explain Pain, David Butler, G. Lorimer Moseley

I read this book twice, once to get through it, the second time to jot down notes of what resonated with me. I have six pages of notes. I needed to read this book. I was encouraged from reading it that change is possible, even with TOS pain issues.
Here are a  few notes I jotted from the book...(this book was loaned to me-it is a bit pricey).

Pg. 111 "Understand as much as you can about what causes your pain, not just what to do about it. Knowledge is the great pain liberator."

Pg.26  "All pain experiences are a normal response to what your brain thinks is a threat. The amount of pain you feel does not necessarily relate to the amount of tissue damage."

Pg. 11  "When pain persists and feels like it's ruining your life, it is difficult to see how it can be serving any useful purpose. But even when pain is chronic and nasty, it hurts because the brain thinks you are threatened and in danger-the trick is finding out why the brain has come to this conclusion."

  I highly recommend this book to my fellow TOSers. It covers alot of information and has been quite helpful to me. If you can swing the digital kindle version, or even just read the online free sample for starters. There are also youtube videos available by the authors that are informative.

My Physical Therapist Says...Part 2

 My p.t asked how I was doing at the start of a recent appointment.
I told him I was throbbing from driving to p.t. in the rain, because I hate driving in the rain. I explained that it was raining the day of the car accident I was in 10 years ago.  I believe that accident was the precipitating factor for my TOS issues and I've not been the same since.
He was quiet, started poking around my neck, doing his job.
A minute later it was still quiet, he said...
Ever stub your toe going around your bed?
*sure (I wonder why he's asking).
How many times have you stubbed your toe going around your bed?
*a few (really wondering where he's going with this).
How many times have you gone around your bed?
*lots, every day.
Silence. I think about that for a minute while he pushes on spots in my neck.
(point taken). I need to relax.
Odds are in my favor I'm not going to have a car slam into me again because it's raining, or stub my toe on on the bed.

I hope he doesn't charge me Dr. Phil's rates for that moment of reflection.

  This is a road you're on and the biggest hurdle is mental, getting past that to keep on moving, gradually, forward.

  When you do these simple exercises or moves I've given you, and doing them causes pain, you need to know you are not doing damage to yourself. You are challenging the system, the muscle, nerves, and they may be upset and you may experience some pain. We don't want you to piss them off by doing too much and cause a five-alarm flareup, but we do want to challenge them and keep gradually moving forward, increasing your tolerance level.

  This is a journey for you.

Next week, a review of a p.t. recommended book: Explain Pain, Butler, Moseley

Gentle hugs~

My Physical Therapist Said...

I was referred for another round of physical therapy with someone new several weeks ago. The approach has been different from my previous experiences with p.t. and I've gleaned a few things I'd like to share with my fellow TOSers. I trust you will find some helpful, and hopeful information you can apply to your own TOS situation.
Stay tuned for more posts of - My Physical Therapist Said.

~ ~ ~

 You've been dealing with TOS and these issues a long time, you're pretty far down the rabbit hole. But you CAN snake your way back up out of it, it's just going to take time - and diligence on your part.

 Your sympathetic nervous system is set too high. Think of it like this: remember when you first started driving, and you saw an animal on the side of the road? You though-oh my gosh, I don't want to hit it!  So you swerved way around it. Now, after years of driving, same situation, you just ease over a bit and don't get as alarmed. Your nervous system response, and thus pain response, is currently set to go off at the 'oh my gosh' level with the lightest stimulation, and we can work toward normalizing that response.

  Eventually, you can get to a place where you engage your nervous system and not have the five-alarm reactions.

  You felt that five-alarm flareup after the last therapy session, but then...you were o.k. Your motion is better today. When you do these movements I've given you, and you experience some pain afterward, your arm/ear/jaw isn't going to fall off, you are not doing damage to yourself.

  Your cells turn over constantly.You can affect positive change in your cells and structure. It's a gradual thing.

  This is a process for you, but you can do it.

~ ~ ~

Stay tuned for 'My Physical Therapist Said'...Part 2- coming soon!

Upper Crossed Syndrome

If, like me, you live with TOS and after trying many things, you continue to have pain issues-take a look at this and see if it might relate to you...



http://www.drserbinski.ca/blog/common-muscle-imbalances-upper-crossed-syndrome-lower-crossed-syndrome

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~