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~

My Physical Therapist Said - Part 8

How often have you thought you would love to detach one or both of your arms because they hurt so much you just can't stand it any more?

I told my PT about having increased arm pain at a recent appoitment.
I mentined that my daughter and I think it would be great to work on getting a patent for 'the detachable arm.' But I also realise it is quite possible to detach your arm and still feel the arm pain.

My physical therapist said, "Now you're getting into the concepts of pain and the brain in Explain Pain!"
I told him I remembered an episode of House where a man felt excruciating pain in his amputated arm, and the good doctor fixed it by sticking both arms in a box with a miror so he could see both hands clench his fist and release. The brain got the message and his pain was relieved. Pretty cool.

There are elements of this that may apply to those of us living with TOS.
We get set up in a cycle of pain, expecting pain, being used to the pain.
How much of that is our brain being addicted to giving us pain signals, and how much is actual physical distress? The answer to that is very indivdual, each TOSer has a variation of things going on with their symptoms. But I think it is worth thinking about how much of the pain we attribute to TOS is actually from a physical cause, and how much of our 'TOS pain' may be of another nature; ie, our brain controlling the show and overreacting.
It's something to think about.

Don't hang in there & gentle hugs~

Big TOS Medical word of the Day-Etilogical

Etilogical =

1.

a. The study of causes or origins.

b. The branch of medicine that deals with the causes or origins of disease.

2.

a. Assignment of a cause, an origin, or a reason for something.

b. The cause or origin of a disease or disorder as determined by medical diagnosis.

Big TOS Medical Word of the Day- Costoclavicular

Definition of COSTOCLAVICULAR

: of or relating to a ligament connecting the costal cartilage of the first rib with the clavicle

Seat design causing neck strain and health issues!

Take a look at these seats and tell me- why are they all concave and curved forward at the top?!
I understand 'safety' is the reason given for the design, but try having TOS and have to sit in one of these seats for any length of time...you find out pretty fast that your pain is about to flareup!

  

Topping the list of seats that are terrible for TOSers, is the car seat. There has been nothing worse for my pain flareups than having to ride in someone elses car with a head restraint/headrest that pitches forward.
This paper addresses some important issues in car seat design, (Link)Automobile headrests extending too far forward with solutions.
A quote from that paper- "In most cars, the contour of the seat backs do not adequately match the contour of the drivers back and the headrests are too far forward."
As this Forbes article confirms, there are alot of people unhappy with the strain on their neck caused by the car seat head rest.
You may write and express how car seat design is affecting your health (a cause of TOS pain flareup) to:
U.S. Dept of Transportation
National Highway Traffic Safety Administration

A few ideas for TOSers to adapt their seat:
As the paper suggests, with warning, you may remove and turn your head rest around.
I have to do this or I cannot drive. I may be taking a whiplash injury risk, but leaving the headrest in the curved forward position is not an option for me.
 (Maybe this is not as much of an issue for those living with TOS who are taller?)

My recommendation for furniture for shorter to average people is furniture made by Best furniture Company.
I realised our living room furniture was contributing to my pain because it was SO slouchy, big and caused me to have terrible posture.


Other options to adapt include:
http://www.necksolutions.com/car-seat-neck-support.html

http://www.addonheadrest.com/backpain.html

http://www.amazon.com/Car-Neck-Pillow-Soft-Version/dp/B005C7ZR5O

http://www.amazon.com/Astar-Memory-Foam-Pillow-M139/dp/B002DBS9KM/ref=sr_1_20?ie=UTF8&qid=1407160243&sr=8-20&keywords=car+seat+neck+support

Happy driving fellow TOSers, gentle hugs~

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~

Big TOS Medical Word - Bilateral

bilateral (baɪˈlætərəl)

adj

1. having or involving two sides

2. affecting or undertaken by two parties; mutual: a bilateral treaty.

3. denoting or relating to bilateral symmetry

4. having identical sides or parts on each side of an axis; symmetrical

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~

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.

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 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!

TOS reading - ebook

http://www.docstoc.com/docs/126375816/Thoracic-Outlet-Syndrome

Good, concise information on TOS!
If you're new to TOS and want to understand what is involved in testing, diagnosis and treatment, this is an easy read and will answer most of your questions.

Big TOS Medical Word of the Day - Hyperalgesia

Hyperalgesia = increased sensitivity to pain or enhanced intensity of pain sensation

http://www.merriam-webster.com/medical/hyperalgesia

This happened to all three of us, the back of our arms have spots that are numbish, sensitive, hard to explain but we all have it. Maybe nerves were stretched and didn't fully recover postop? It's not a problem for us unless a dog or a kid or unknowing person taps or touches just the wrong spot on the back of the arm....eeek.

Big TOS Medical Word of the Day - Subclavian

Subclavian = (my definition) vein/artery that runs under clavicle.

 http://dictionary.reference.com/browse/subclavian

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/