"Changed in a positive way"

Yesterday I saw my physio at UPenn, Marty, who has been overseeing my 'progress' and treatment because he is considered the best and most experienced physio in this area, specialising in scapular issues.  I was referred to him by my surgeon, Dr Kibler, 17 months ago now.  For the first visit, my regular physio (in PA), Angelo, came to my appointment with me (a real illustration of how wonderful he is) and I was evaluated by Marty.  I was in a very bad way at that initial consultation.  I saw Marty and Dr Kibler together at a conference in Philadelphia in November 2012, and Angelo (and my Mum) were also there - I felt very lucky to have had the opportunity to have them all in the same room, sharing opinions and discussing the way forward at that time - especially as they all work hundreds of miles away from each other.


Seeing Marty has been incredibly helpful.  In all honesty, the appointments are good, the information is top class, but the general opinions on my progress and the state of my shoulder are not fantastic (possible understatement.... dire would probably be more realistic).  One of the main benefits of seeing him every 4-6 months is that he can offer some real perspective which is difficult to get when I am dealing with my shoulder every day, or other therapists are seeing it weekly, or even multiple times a week.  


My physio in Scotland (I'll call him R), felt it would be helpful for him to have a scapular-issues-expert give some feedback to help guide him with his treatment.  He is also a fantastic physio, and has the advantage of knowing my body well, as he has treated me throughout my life for the many injuries I sustained as a gymnast.  He also has strapped my injured ankle for competitions, and watched me fight through injuries to return to training and competing as quickly as I could - basically, he knows me; he knows I am not someone who is beaten by my injuries; that I have the ability to battle them; that I know I have to work to recover; and he has watched me go through that process multiple times before.  So on a personal level, he knows my capabilities and determination, therefore he really does know that I am not the type of person who will not bother with exercises, or fail to adhere to my rehab programme - he will never accuse me of being weak, or neurotic, or not able to deal with pain because he knows that is not me.

Generally I am described as a 'compliant patient'! Although the 'resting to heal' bit seems to require more mental effort than the 'pushing through' bit - I have learned that the physical response really should dictate this... I'm just working on applying it a bit more effectively.


Despite his expertise, and experience in dealing with unusual sports injuries, R hasn't encountered my injury before (I really don't think anyone has - not all of it in combination) and he said it would be helpful for him to have some feedback - and some perspective, which is exactly what Marty can offer, having evaluated me from August 2012.  So I am sure he will feel both delighted and relieved that Marty said I should keep doing what I'm doing just now - it is the greatest improvement he has seen (have to qualify, that IS relative).  He felt that my scapula is moving better than he had seen it move before.  That's the good news.  And it IS really good news  -  it's been a long time coming; it still does not move anywhere close to 'normal' (and nobody knows if it ever will); it does not move in the same way as my left (good) side and (in my opinion) it really can look quite deformed in some positions (I don't think anyone would disagree, they just steer away from words like that!) -  BUT I have many hurdles to overcome and still a long, probably bumpy, road ahead of me filled with unknown challenges, heading towards an unknown outcome.


One step at a time - still the necessary advice.

I did take a copy of my dynamic neuromusculoskeletal (NMS) ultrasound reports to my latest appointment (I only got the reports in November; scans last August) and the specificity of the reports is something very new in dealing with nerve injuries.  The scans, and the fact it is possible via these ultrasounds to view the soft tissue - muscles, tendons, ligaments, nerves - as my arm was moved, confirm what was really just a suspected issue beforehand.  It seemed to be clear to the physios that I had nerve issues, but the standard nerve testing at the moment is an EMG (electromylograph) where hollow needles, filled with electrodes are inserted into the muscles and the electrical conductivity is measured.


This involves sticking the needles into different muscles (one at a time), testing at different depths of the muscle, testing with passive movement (the doctor moving the arm/hand/thumb etc.) and active movement (me moving, or attempting to move).  I'm sure I've said it before, but just to really reiterate - these HURT.  These hurt like hell.  As in crying out and whimpering and squealing throughout the entire process. Imagine having a needle pushed into the muscle between your thumb and first finger and contracting the muscle so it actually feels like you are squeezing a mini metal rod inside the muscle (feel sick yet??) - that's about the best way to describe how that feels; then imagine having an injection, but instead of a 'slight pinch' and 'over in a second', imagine the needle is inserted and then wiggled about at different depths - pushed deeper, wiggled, pulled out a bit, wiggled.... get the idea?  I have to stop.... the memory is actually making me feel sick!! -  I had four EMGs.  The first one took about 45 minutes and I think I had 14 needles sticks.  There are also nerve conduction studies which send little electric shocks from one point to another via electrodes stuck on the skin.  I have read people say these are sore, but compared to EMGs, they are nothing - a little electric shock, and over very quickly.


What these tests can show is whether or not a nerve is conducting electricity - i.e. sending messages to the muscles and telling them what to do.  All of my EMGs were negative, meaning I didn't have any severed nerves - a really good thing.  BUT.... that's pretty much their limit.  My later EMGs (6 months post-injury) showed "slow firing" which was attributed to pain and hesitation - I don't know enough about the actual numbers and measurement, I'd guess that was probably a factor, but what is impossible to tell (as far as I'm aware) is what other damage that might suggest.


With the dynamic NMS ultrasound, it is possible to see the damage in much more detail - on video; and to see what happens with movement - which I feel must be incredibly helpful, because most injuries DO feel better at rest. The dynamic testing has to be an enormously beneficial step forward.  With my NMS ultrasound, when someone lifted my arm, my 'thoracic outlet' (where the nerves split into the various nerves that transmit messages to the arm/ shoulder) was completely crushed to the extent that it disappeared on the video screen.


This video from Dr Fried's article (linked below) shows a normal scan, and a positive scan and is almost exactly what my scan looked like when comparing the left (good) side with the right (injured) side (it is short and features a simple, explanatory commentary):

• 
  

HAND

September 2013, Volume 8, Issue 3, pp358-365

Dynamic neuromusculoskeletal ultrasound documentation of brachial plexus/ thoracic outlet compression during elevated arm stress testing

Scott M. Fried, Levon N. Nazarian

(Click for the journal article - if the video doesn't load, it is available on the webpage under "supplementary material")

The reports from the scans (I had three areas scanned) are very specific - showing scar tissue within the body of the muscle, scar tissue/ adhesions wrapped around the nerve(s), inflammation of various muscles, nerves and tendons, and also changes/ abnormalities in the tissues, indicating evidence of injury.  And possibly most importantly, they show how movement affects these structures - by compression, or other abnormal effects of movement.


That's all a bit medically complex, compared to my usual blogs, but it's necessary to explain because ultimately it reassures my physios that they were right - they can see nerve injuries from movement patterns, pain descriptions etc., but there isn't any 'scientific evidence' in many cases, which Western medicine has placed on a pedestal and considers necessary for confirmation of any diagnosis.  Unfortunately, it makes confirming nerve injuries and verifying the extent of a patient's pain very difficult for doctors.


I do understand that - pain is subjective and what might rate as a 4/10 for some people may be described as an 8/10 for others - how do doctors differentiate between this?  And perhaps more pertinently, is it necessary to differentiate?  If someone considers their pain unbearable, does it matter how someone else would describe it?  I don't know.

My scans, and reports do show that I have thoracic outlet syndrome (the crushed nerves in the video), brachial plexopathy and associated nerve damage; that I have scar tissue 'squeezing' my nerves, scarring in the muscles the nerves travel through; inflammation of the nerves at specific points, causing the burning and numbness, especially in my hand - and more.  In a way, it describes my pain; and, more importantly, it validates it.


None of this is especially good news from a physical point of view when everyone considers what this means for me right now - it means that my pain IS very similar to RSD/CRPS-type pain, except I have a cause that has been viewed - it still means my pain rates the same as the most painful chronic pain condition that exists (42/50 on the McGill pain scale - childbirth is rated at ~30-36/50); and I have that pain constantly - it never goes away.  The intensity fluctuates: sometimes is calms down and sometimes it roars, BUT knowing there is a reason for it does offer a little comfort - people with genuine RSD/CRPS do not (yet) have a medically understood cause for their pain, and it always comes with the possibility the pain can spread to other limbs, or in the worst case scenarios, throughout the entire body.

McGill Pain Index, showing RSD/CRPS (causalgia) pain ~42/50
(click to enlarge)

It does mean that my doctor can give me an estimated time on nerve healing (around 2-3 years from these scans) - again, this is not great, but it is better than being told "you could have this pain when you are 80" - which really might rank close to the top in terrible things doctors have said to me (it's a tough contest though!).  It means a lot of things are unknown; but it does mean my exercises and rehab programme can be tailored more specifically - so right now gentle nerve stretches (to attempt to stretch out the 'bad' scar tissue), massage to break up scar tissue within muscles, and maintaining a range of motion are the important things.  NOT attempting any kind of strength training, or resistance training, and resting when necessary, are all very important too -  because irritating the nerves in any way will only cause these problems to increase, and will prevent healing.


The outcome of my appointment yesterday was that Marty said, all things considered:
-  fracturing my scapula was nothing, 
-  the dislocated shoulder was not a big deal
-  the detached muscles were not even the biggest problem 
-  the torn muscles (all of them!) were not the issue
       (and those are some major things!!)

- all along, the brachial plexopathy is the WORST thing


I wasn't very happy that I scored 18% on the shoulder function questionnaire compared to 20% last August, although for 2 percentage points, that can fluctuate even within a day - it depends on exactly how my pain is when I answer the questions. I have been told NOT to focus on this!  I did think I'd have gained a few more points, but I still have very little 'normal' function in my arm - my passive movement has improved, but my active movement really hasn't - this all fits with the nerves not functioning so at least we all understand why things are the way they are (finally.... hopefully finally!).


For me there is some relief in that - having answers, hoping that this really IS the final answer; but it doesn't take away the severe pain, or the frustration of not being able to live any kind of normal life, and not knowing when that is likely to change.  It is also scary trying to look too far ahead - I do know (having been told by a couple of doctors, and also having read it in Dr Fried's book) that in some cases conservative treatment is not effective, and removing scar tissue surgically becomes necessary.  However, the fact I am seeing little (teeny tiny little) improvements now is a positive, and I am hopeful that it is an indication that we have finally found the right information and the right rehab programme, and that these will combine and give me the best chance at avoiding any kind of nerve surgery - inherently risky, for obvious reasons, and always a last resort.  But I just have to keep doing what I am doing; hope that I am creating an 'environment' that is conducive to healing, and that I will continue to see these small positive steps - and most importantly, will lead to a reduction in my pain level....... soon, please.


Marty's overall conclusion was that I am a little better - but "better is a relative term" and therefore I think the most positive thing he could think of to say was: "you've changed...in a positive way" - which is better than before!

So sleeeeeeepy.............

Today, I am struggling to think of anything inspiring and uplifting.  Honestly? I am tired.  Exhausted. Completely energy-less.... Out of spoons (if you've read the spoon theory)

I'm tired and sore after physio yesterday and I really just need a good night (um, and day)'s sleep to make me feel human again.

So here's some cute pics.  This is what I feel like I'm doing. Every now and then I open my eyes and try to keep writing....

And I already feel quite sure that this is my plan for tomorrow!  

And then, hopefully, I will feel more like myself again and be more able to think! 

But aren't the sleeping pups and cats cute....??

(All images from Pintrest)

“Why does the eye see a thing more clearly in dreams than the imagination when awake?”

  ~ Leonardo da Vinci

Voice Within

Intuition.  It's really something we don't know very much about.  We talk about a 'gut feeling' or 'going with your instinct' but - scientifically - we don't really know what it means.  There are some interesting cases and psychology research experiments that show that there really is some sort of intuition (or whatever certain psychologists, neurologists or cognitive scientists want to call it) and that in certain circumstances we unconsciously know something before we consciously know it. (Malcolm Gladwell's book Blink is a pretty good pop-sci overview.)

I've learned that when it comes to my health, going with my intuition really has been the right thing to do - and it's really been a battle... For example, the other day I counted that I saw seven doctors, one nurse, and five physiotherapists when I was in Scotland last year.  Thirteen medical professionals, all relating to my shoulder.  Some only saw me once, some multiple times.  None of them had ever seen my injury before (it's well established now that this is unusual so that is not surprising) so no-one diagnosed it; but the treatment I got from each medical professional was completely different.  Some were kind, caring, as you would expect from a medical professional, and some were not.  These are, of course, the ones that really make me think about this whole 'intuition' thing - the ones that were not caring, or compassionate - or even pretending to be -  but generally dismissive and condescending.  The ones who sit peering superciliously over the top of their glasses, legs stretched out in front of them, crossed at the ankles, and their hands clasped tightly behind their head, elbows sticking out - the very embodiment of professional arrogance.  

Here are a few chosen quotes from various appointments that best illustrate my point:

You're young. You'll heal. 
(After yanking my arm in the air - a motion I was completely unable to do myself, given the muscles required to do so were detached - and not even looking at my scapula... which was unable to move, so a physical examination to confirm that comment might have been useful.)

You seem overly focused on pain. 
(Funny that, when actually two major muscles were detached from my shoulder and I couldn't use my right arm.)

You need to deal with the emotional aspect of pain.  
(Detached muscles? Sure, refer me to a psychiatrist... that's the solution.)

Nerves don't do that. They either work or they don't. 
(Seriously? After explaining two doctors and two physios thought I was having some hypersensitive pain issues.  And now, I have RSD-type symptoms... what's that? A syndrome where the nerves are hypersensitive to pain.... possibly caused by not treating the pain in the first place.)

EMGs are just tests used by private healthcare to make a lot of money
(After me saying the doctor in the US recommended I had more nerve testing done in September 2011 if I was not making progress.  Eventually, in January 2012, further EMGs played a major part in setting me on the path to my correct diagnosis.)

She'll just get over the shock of not needing surgery 
(Overheard in the corridor by my Dad while my Mum was trying to help me get dressed but actually I was curled up on the bed crying because of the scapular movement the doctor had forced during the examination... that was his comment to the nurse when my Mum stuck her head out the room and asked for some water for me.)

And perhaps the best:

You might just need to learn to live with it 
(This was after asking about extremely painful pinging sensations I was having sporadically... the pain they were causing was so horrendous it literally rendered me speechless (amazing, right?) and resulted in the one A&E visit I made in Scotland.   Each time it 'pinged' I lost more movement in my arm.  Eventually, after visualising my injury, and the state of the muscles and scar tissue during my surgery, my surgeon believes the 'pinging' events were actually more muscle fibres detaching from my scapula as the tension increased and the muscles weakened.)

Actually, on second thought, maybe this was the best... tough call:

This is not like being told you have chronic fatigue syndrome when you actually have Lyme disease.  Nobody's missed anything here. 
(Apart from wishing I'd not given my entire medical history to be judged so blatantly, this doesn't really need any further comment...)


I could really write a lot more but I think these little gems make my point perfectly.


After one particularly bad appointment, when I was in Scotland, I was on skype with my parents to tell them about it.  This basically involved incomprehensible explanations among the sobbing and blubbering.  At that point, my Mum asked me, Do you think there's something wrong? And I said yes and that was enough for my parents.  I really think that was such an important conversation, as short as it was, because it was basically me trusting my gut and my parents supporting me in that.  Had that gone a different way, everything would have been different and when I think about that I really do realise how lucky I am to have had the unyielding support of my parents throughout this - and really, all through the years of Lyme issues too.

And I have had much support along the way from various friends, doctors and therapists but ultimately it was my gut instinct that I trusted that set me on that direction.

I could have chosen to believe I was going crazy, because it certainly felt like it at times.  I could have decided there were so many medical people telling me there was nothing wrong that they all had to be right; but I could feel it.  Like everything else in life, we have to choose our path, be responsible for our own decisions and I chose to trust in my body and what it was telling me.

When I had my first appointment with Dr K in Kentucky and he asked me to rate my pain, I told him that I really didn't want to be dramatic, but sometimes it was a 10; sometimes I would be curled up on my knees, crying and moaning in pain, with several pillows supporting my upper body, in attempt to take all pressure and weight off my shoulder blade because I couldn't get any relief.  

He told me the best thing I had heard since I hurt my shoulder.  He said: 

"you are tough"

I told him I used to think I was tough until I had this injury but I didn't feel tough now.  He told me that this injury, for reasons still unknown, causes the most pain and disability in patients that he sees (as an orthopaedic surgeon). He said that I was tough, because I had made it this far.

He also told me I was not crazy.  He said it did not matter what any other doctor or medical professional had said, or implied: my pain was real; it was severe; and it was extremely disabling.

Then he told me the recovery would be tough too, and at that point all I could think about was that this kind, caring, compassionate, gentleman of a surgeon was going to fix my shoulder. I just couldn't imagine it could get any worse than it felt at that point.... oh how naive I was!!  How blissfully ignorant.  I suppose we are lucky we cannot see what is in front of us...  However, even knowing what I know now, I would have made the same decisions - ultimately, it needed fixed.

And now, as I continue to struggle my way through my recovery, facing a new challenge with every attempted 'new' movement or exercise (or generally each new day), the best advice I have been given is to trust my instinct. When my body is ready to increase the reps, or push the stretch a little further, or hold it a little longer, I will know.  Yes, it means testing it every now and then and trying to push the boundaries, but I have to truly listen to my gut telling me whether it is the right or wrong thing to do... because my head always tells me to push it a little bit higher... faster... stronger.  And as much as I hate to disagree with that, going with my gut is what's been giving me results, slow as they may seem.

I chose this song today because I love the words and they really resonate with me (as I guess might be obvious from the rather long blog post I've just written!).  For me, it conjures up all sorts of images, particularly of an inner conscious (instinct?!) giving guidance; reminding us that we are strong.  We all have it within us to be strong; we have to trust ourselves; to go with our gut; and to never ever let anyone take that inner self-confidence away from us.

"The Voice Within"

Christina Aguilera

Young girl, don't cry

I'll be right here when your world starts to fall

Young girl, it's all right

Your tears will dry, you'll soon be free to fly 

When you're safe inside your room you tend to dream 

Of a place where nothing's harder than it seems

No one ever wants or bothers to explain

Of the heartache life can bring and what it means

When there's no one else

Look inside yourself

Like your oldest friend

Just trust the voice within

Then you'll find the strength

That will guide your way

If you will learn to begin 

To trust the voice within

Young girl, don't hide

You'll never change if you just run away

Young girl, just hold tight

And soon you're gonna see your brighter day

*     *     *     *     *

  

Yeah...

Life is a journey 

It can take you anywhere you choose to go

As long as you're learning

You'll find all you'll ever need to know

 *     *     *     *     *

(Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)

I also love the line about life being a journey.  I have many quotes about this and I truly believe this now.  I have learned so much and been so many places (physically, mentally, emotionally, psychologically) in the last eight years that I never anticipated, so I have completely accepted that is life.  It's all about the journey.

Life is a journey, not a destination

~ Ralph Waldo Emerson

Take comfort in your friends

It's been another quiet day.  I'm feeling a little bit better and my pain has responded a bit to the drugs so the weekend hasn't been quite as painful as last weekend, but I think I'm still planning some experimenting to see if I can get it under better control... it would be good if it didn't take three days to calm down - only to repeat the process tomorrow!

Unfortunately, my Mum has been in bed for two days with flu-type symptoms now so hopefully she will feel better quickly.

I didn't really pick this song today because my Mum's not feeling great, but generally one way I try to keep things in perspective is to always remember there is someone who is dealing with something harder than I am (not talking about my Mum here - nobody worry, she's ok!).  It's not always the best way to fix things because someone else's situation doesn't change yours - I still think it's important to address your bad day, cry, scream (or break things!) and then focus on the positive things and move on.

My favourite line in this song is about friends.  I do not know how we would get through life without our friends and I am very lucky to have some very amazing friends who have really been there for me this year (and also, thank technology for skype!)

R.E.M. Everybody Hurts

When your day is long

And the night, the night is yours alone

When you're sure you've had enough

Of this life, well hang on

Don't let yourself go

'Cause everybody cries

And everybody hurts sometimes

   *   *   *   *   *

Everybody hurts

Take comfort in your friends

Everybody hurts

Don't throw your hand, oh no

   *   *   *   *   *

Well, everybody hurts sometimes

Everybody cries

Everybody hurts sometimes

And everybody hurts sometimes

So hold on, hold on

Hold on, hold on, hold on, hold on, hold on, hold on

Everybody hurts

(Again: I don't own any music/ videos etc. All linked to Youtube and artists accredited)

And a quote that is always applicable to the best friendships:

“Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.” ~ Dr. Seuss

Frozen Scapula

"I know you've been screaming this at everyone for months, but I think your scapula is stuck." said my physio.  This was established by various movement/ manipulation attempts, all of which I failed miserably - it seems the muscles under my scapula (particularly the subscapularis) are not really doing what they should be doing.  I've also been getting a lot of increased nerve-y type pains and strange symptoms like burning in my hands and, strangely, a sensation where it feels like ice cold water is 'leaking' out a specific spot in my hand/fingers - I check to see if something has dripped on me but it's always dry.  He now thinks that might all be coming from compressed nerves under the scapula.  The pain I am still getting wrapping round my side along certain ribs would also be explained by everything under my scapula being 'stuck' as the same ribs originate there.


Next step: "I'm trying to get my fingers under your scapula and pull it away from the thoracic cage." And yes, that hurt as much as you'd imagine!


I've heard of a frozen shoulder before this year, and I've heard (and learned) a lot about it this year.  Before, I always thought it just meant the joint was stiff but basically (my basic understanding now) it's when fluid gets into the joint and it literally freezes/ solidifies and makes it impossible to move.  Usually that refers to the actual ball-and-socket joint we think of as our shoulder (I have problems here too), but there is also such a thing as a frozen scapula.  My understanding of it is that basically when everything ripped apart when I fell, and then was unable to move properly for so long - before and after surgery - it has healed kind of stuck together.


A frozen scapula's a bit more unusual (of course it is.... I really should have realised by now there is not one aspect of this injury that is normal/ common) - I tried searching Google Scholar for "frozen shoulder" and got 8,910 hits and for "frozen scapula" I got 1 (yes ONE) hit - I wasn't expecting a lot, but this still really surprised me!!  On Science Direct I got 2,009 hits for "frozen shoulder" and 3 for "frozen scapula".  Even Google threw up 10,400,000 search results for "frozen shoulder" but only 671 for "frozen scapula".


I have been saying that's what it feels like for months.  It's like everything is glued together and I simply can't make my shoulder blade move.   That's pretty much what it looks like too.  I think probably a lack of movement was expected after my surgery so it's been hard to tell before now what has been within 'normal' range for after the surgery and what has been a real problem.  Now, given the amount of healing time I've had, it is very clearly not moving as it should be.


Sometimes for a frozen shoulder they will aggressively manipulate the shoulder under general anaesthetic.  We did discuss this but there is a risk that without me being aware of pain, the person doing the manipulation could torque the shoulder excessively and damage the repair.  I've been told that I can't do anything to damage it now (i.e. exercises), but it is still very weak and excessive force could damage it.


However, the solution is to stretch out the tissue and get some movement back in my shoulder blade again so this week I have taken Valium, along with my usual strong painkillers and muscle relaxants before physiotherapy and I have been able to tolerate a bit more movement and massage of the area.  I am not knocked out, or even dopey enough to not feel the pain - it still hurts! - it just means I am able to tolerate a little bit more, so gradually it should loosen up a bit and I should be able to move it a bit more.


I have a ridiculous tolerance to drugs - actually, I don't even think tolerance is the right word given that I've never taken Valium before in my life, my brain just seems to fight them (when I was 12 I got my tonsils out and they gave me a strong sedative pre-surgery that was supposed to knock me out and it did not... actually it was a really horrible experience and I vividly remember the entire, um... 'trip' I suppose is the word  - had I ever been inclined to take drugs, that experience would have put me off! So it's just the way I've always been!).  Anyway, I've required quite a strong dose, combined with other strong painkillers, and taken on an empty stomach to even get enough of an effect for this to work.  It doesn't last very long either - maybe 90 minutes, so I have to time it all very carefully to get the optimum dose working at the exact time the physio is working on me.    And to top it all off, my strange reaction to drugs means the Valium - often used as a sedative - is giving me insomnia on the day I take it, so it's been 5am before I've been falling asleep... however that has meant that I've pretty much slept all day the day after the therapy which has probably been the best way to deal with the horrible pain.


The extra movement and massage in the surgical area is making me feel like I've been beaten up.  It even hurts to breathe right now because my rib cage expanding is agony.  I've had to increase my pain meds again and feel like I'm permanently attached to my ice machine... But even in two sessions, my physio is amazed at the increased movement he is getting with my arm - OK, it's nowhere near even close to normal, and I still can't move it like that myself, but it has to start somewhere and this is the most improvement I've had in months.


The plan is to try this for a few more sessions, see how the movement increases and then I'm hoping to try some therapist-guided aquatic therapy in a heated pool.  The idea is the heat is good for the muscles/ blood flow/ healing etc. and the buoyancy effect reduces the weight of the arm and (hopefully) it will move more, so my movement should increase.  


I think it's a bit torturous right now, but I am feeling really positive about trying this - it makes sense to me based on how my shoulder feels and how it moves (or doesn't move actually) and I think the fact there seems to have been some improvement after just two sessions is really encouraging.  


And in between all that we have been trying to unpack and organise the new house.... I say "we".... really, I'm pretty useless right now and Mum's doing a fabulous job!  We still have quite a lot to do though.....


It seems the day for a feel-good positive, motivating quote!

"What lies behind us and what lies before us are tiny matters compared to what lies within us." 

            ~ Ralph Waldo Emerson

"You must have been a real bitch in a past life"...

... said my friend to me this week.  Real friends know exactly how to make us smile. No gushing sympathy... which actually makes me feel really uncomfortable  - what exactly are you supposed to say when someone says "oh you must feel soooooooooooo awful" or "I feel sooooooooo sorry for you"?  I feel a strange compunction to reassure them that actually not being able to use my right arm isn't that bad; or talk about how I'm practically ambidextrous now; or stand rather awkwardly not saying anything at all while they look at me with "the head tilt" (remember Friends?!), they fuss a bit.... then usually they reach in for the hug, say they'll only hug me on the good side, and then reach around and continuously pat me on the broken scapula/ surgical site.

 I know, it's all very well-intentioned, and I very much appreciate it... BUT being told I was a bitch in a past life was refreshingly funny! And most importantly, it made me laugh!  There's nothing like laughing with a fabulous friend..... it should be considered therapy!

It's been a pretty rubbish couple of weeks.  I had some intense pain in my shoulder, burning in my upper arm, hard lumps appeared in the bicep/tricep area, my movement - even the "easy" stuff I was doing became much sorer.... last weekend I was seriously worried. I felt like I had a bad flu that somehow connected to my sore arm. I couldn't stand up for very long without getting dizzy - not just a little bit dizzy, proper spinning, even with my eyes shut; dizzy still when lying flat on my back and that was accompanied by nausea... combined with my 'usual'.  I had some blood work done and am waiting on the results of that.  Maybe it will show something helpful.

If not, it seems that it is the pain causing these symptoms/ incidents.  It really just feels like my body is saying "I've had enough of this pain and  I need to sleep. I don't seem to have a real say in this!! It just happens.  Ugh.

It has definitely been a time to live in the moment and not think too far ahead (sometimes dinner is too far ahead!) because, honestly, if I try to think too much right now I'd go crazy.  This is very much a step-by-step approach.  I don't know how I'm going to feel from day to day, or week to week.  It feels impossible to plan things right now.

In other news, we are moving house tomorrow.  My Mum has been like superwoman again! I have really been close to useless in packing/ lifting/ carrying anything! My Dad's been working a lot so she's packed most stuff herself.  My Dad's been helping move some boxes to the new house this week and had a few guys from work who very kindly spent some time helping yesterday packing and unpacking the van my Dad hired.  They got a lot of great stuff moved.

Tomorrow the movers are coming for the furniture and then there will just be some bits and pieces so sort over the weekend.  It's quite exciting! 

It's also my Mum's birthday tomorrow!  I think we'll celebrate over the weekend as tomorrow is going to be a v - e - r - y busy day!

Hopefully it will go smoothly and hopefully next week I'll get my results back and I can move on from there.


In the meantime, let's hope I had a glimmer of nice in my past life that gives me good karma!

“The distinction between past, present, and future is only a stubbornly persistent illusion”

                                ~  Albert Einstein

A much more positive week

This week has been so much better.  I'm not really feeling any different physically and I haven't magically regained any more function in my arm and shoulder, but I had a couple of positive appointments packed full of great information and I am feeling much more optimistic about it all right now.

My appointment at UPenn with the physiotherapist Dr K recommended was excellent.  I had read about him prior to the appointment - he has a great reputation and an impressive CV with lots of publications and he was highly recommended by several people, so I was really optimistic about the appointment.  I was not disappointed.

He was very thorough, examined me, tested my movement - FELT my muscles and my movement more than looked at it -, asked lots of questions and spent a lot of time answering my questions too.  He thinks I have an ongoing nerve injury called brachial plexopathy.  This is something that has been discussed before.  Although my nerve tests ruled out tears or avulsions (a good thing) other nerve injuries such as overstretching might not be detected.  He said that my symptoms and movements fit with other patients he sees with this injury and he did explain a lot of that to me.  It really made me feel better to hear that he recognises these symptoms and that he thinks they will improve.

And, as I am now well aware(!), I did a lot of damage to lots of different muscles and tissue and it is all going to take time to heal.  However he said that looking at me he does think that this will get better.  My physio I saw in Scotland, also a great physio with years of experience (even although he has never seen a detached rhomboid & trapezius before) said almost exactly the same thing.  To me, it almost seemed like an instinctive knowledge, something gained only through years of assessing injuries and assisting recoveries; but they both said it the same way - this will be hard work and it will take a lot of time, but what they see makes them think I WILL regain function again.

I have to focus on reducing my pain and not aggravating my shoulder right now.  I have not to try to stretch it out or build strength or movement, or to do anything that could irritate the nerves and make them crazy.  I have some exercises to do that will maintain the movement I have and stop my shoulder seizing up or getting any tighter, but the focus is on calming things down.  Enabling healing.

I've been saying for ages that I'm sure I will feel much better when I can work hard on my exercises and know that I am doing everything I can to build up the muscles and increase my strength again.  It is much harder to realise I am still helping it by doing very little.  However, I feel that it is the right thing to do.  We get pain for a reason and so much of modern medicine seems to focus on fighting our bodies instead of listening to them and responding to that.  My appointment really made me feel that it is ok - more than ok, important - to really listen to my body and to be guided by what it tells me.

The physio spoke a lot about "unconscious movement" and how the body will do that when it is ready; right now it is protecting itself.  That really makes sense to me - I have been trying so hard to make it move and to do things as normally as I can, but it all feels like a constant struggle.  Taking that pressure away and paying close attention to how every tiny movement FEELS is definitely making it feel less aggravated.

My TENS machine is helping with my pain - for the first time since my surgery, I really feel as if I have some adequate pain relief.  The pain returns very quickly when the machine stops (time to change the batteries - I am saving the planet and using rechargeables!) but I can use it as much as I need it (as long as I move the electrodes about regularly) so it's fantastic!!

I also had some good discussions this week with my regular physio (who was so brilliant he came to the other appointment with me - that was so helpful and very much appreciated!), my neurologist and my Lyme doctor.  All of them feel that the RSD/ CRPS diagnosis is not really the answer to everything (with varying opinions on RSD itself as a diagnosis, definitely a discussion for another day) and that I do have associated symptoms, but they are because of my injury and they will heal with time.  Much more positive, and I feel much more optimistic about things now.

I said to my Mum, "The information I got from that doctor in Kentucky really wasn't good, it could have been psychologically damaging for some people." Mum said, "some people??!" Oh well, at least I feel I can move on from that now!!

 "If  you're  going  through  hell,  keep  going."

                 ~ Winston  Churchill

I am not an island...

It's now been a week since we got back from Kentucky.  It was a very eventful 3 day visit and it has really taken me all week to even try to begin to make sense of everything in my head.  Overall I reckon I spent about 16 hours at the clinic between the surgeon, shoulder therapist, physiotherapist, radiologist and rheumatologist and was pushed, pulled, scanned, measured, stretched, prodded, and jabbed!  Obviously a lot of information was packed into that time so I'll try for a quick summary.

Day 1:

I initially saw the shoulder therapist who had a 5 minute look at me and decided I had to see the surgeon immediately; he had a good look at me and sent me for a CT scan then I went back to see him after the scan.  He reviewed the scan with me and talked us through the images, stopping to point out the "gaps" in my scapula where he had drilled holes!  The scan was really looking for scar tissue or bone spurs that might be "sticking" my shoulder and preventing it moving and it showed no evidence of these.  This is really good because it means I don't need more surgery, but it does mean the issues are more complex.  

The other good news was that the actual surgical repair looked good on the scan.  The muscles are definitely attached and "firing" but they are just very weak and aren't really able to work properly right now because my shoulder isn't really working so I'm not regaining "normal" movement.  Dr K did tell me that it would take time to build strength anyway and it was like some of these muscles are "starting from before zero" so regaining any kind of strength will take a long time.  Even just enough strength to hold my head up unsupported!

The scan did show I have pockets of fluid in a couple of muscles and these correspond with some areas of bad pain, so Dr K gave me two cortisone and novicaine injections into the pockets that were accessible (a couple were too close to my ribs to stick a needle in). Ouch.  The novacaine was supposed to numb it quickly but I didn't get the numbing sensation and the cortisone can take a few weeks to work but hopefully it will reduce some inflammation.  They don't know what causes the fluid though, it's just a sign the muscle is "unhappy".  The injections really hurt.  My body really protests against needles being inserted deep into my muscles (surely that's normal?!) and between the cortisone injections I had last week, last year, my 4 EMGs and a course of acupuncture I think I must be running at about 50 muscle jabs in the past 14 months!!

They did tell me that I was a "complex case" from the beginnning, and I had such a huge amount of damage in the most complex joint in the body.  I was also told, "You are not an island." Very profound, and the therapist's way of telling me they were there to support and help me right to the end of my recovery.


Day 2: 

The plan today was to spend some time doing exercises with the shoulder therapist but given my lack of mobility and the scan's lack of... um, well anything really, they had one of their physical therapists - who has dealt with the rehab in many scapular reattachment cases - assess me.  Her assessment:

"Asking your shoulder to work right now is like putting a stick through the spokes of a bicycle and asking you to ride it uphill really really fast."

She also said:

"Last week I had a girl in here presenting with very similar issues as you and she had 12 degrees of internal rotation and I didn't think I'd ever see worse than that and you have 7 degrees.  That's not something you want a gold medal for."

I should add, she was very nice!  The upshot is that the muscles in the shoulder need to fire sequentially and work together for any shoulder and arm function and mine are just not doing that but they're not entirely sure why not.  I am also still having major pain issues that seem to have a neurological/ neuromuscular/ nerve-based connection so they wanted me to see a rheumatologist about that.


Day 3: 

First I went back to the orthopaedic clinic and the therapist went over the series of exercises they want me to do for two weeks.  They are even more simple and basic than my last lot of exercises and the aim is to do very simple repetitive movement on a "closed kinetic chain" to re-teach the muscles how they should work in sequence.  CKC movements are where the arm is supported at both ends for stability - so the body provides one end and the hand pressed against a wall or a table the other; the idea is that the muscles are not required to do as much work and can do the movement properly without the strain - the arm is very heavy!!

After that I went to see the rheumatologist who specialises in Reflex Sympathetic Dystrophy (RSD) also called Complex Regional Pain Syndrome (CRPS).  He was a very nice doctor, took a lot of time going over everything with me, taking my history and examining me, but this appointment was really the low point of the week.  And that's really saying something given everything that had come before.

RSD/CRPS is a condition where the nervous system responds to any kind of stimulation (touch, movement, even a gentle breeze on the skin) with a hypersensitive pain response.  Symptoms include swelling, changes on the skin, change in temperature, extreme skin sensitivity, parasympathetic responses to pain (like the sparkly lights, nausea and dizziness) and I tick all the boxes.  There isn't really a question that I have some of these issues going on and that my nerves are just screaming PAIN PAIN PAIN with every movement or sensation that affects my shoulder and arm.  But the diagnostic criteria state that the level of pain is disproportionate to the initial injury - which is not true in my case.  The million dollar question is what causes the pain - is there a mechanical issue still sparking all this pain? Or is the pain response "stuck" and now the main problem?  In other words, making one go away should fix the other problem, but what way round does that go?  A bit of a simplistic explanation, but really the crux of my problem.

The specialist was very focused on pharmaceutical options and drug combinations and felt I had "classic" RSD.  He recommended several types of drug and said this would not go away without the drugs.  He also said people can just have this forever and that drug therapy can take a very long time to show any effect.  Both Mum and I asked several questions about some of the drugs and really felt he did not have adequate answers - certainly none for me that justified taking very strong drugs with potentially bad side effects without actually just giving things more time to heal.

So, to sum up:
           -        nasty condition
           -        might have it forever
           -        need lots of bad drugs

I was incredibly upset after the appointment.  That's actually a massive understatement.  I can barely think about it without getting upset again.

I went back to discuss everything with the shoulder therapist again after that appointment.  They don't think that the basis for my pain is this, but they feel I have RSD issues ALONGSIDE my mechanical issues and they don't want them to get out of control (ummmm.... more out of control!).  There are many reasons for my continued lack of mobility and ongoing muscle pain - for example: possible tiny adhesions that don't show up on a scan; possible tiny adhesions wrapped around nerve tissue; "shrunk" muscles - where the sarcomeres (this was my new word for the week, these, apparently, are the building blocks of the muscle) actually reduce in number and this completely removes the muscle's ability to expand; the mysterious pockets of fluid; ongoing inflammation... the list goes on.

After I calmed down a bit, we did make a plan that I can move forward with.  I do not want to start the drugs that were recommended.  I feel that they are very much a last resort - the average recovery time for this surgery is 8-12 months and even though it seems like an eternity, I am still "only" at 6 months.  Also, I have actually tried a couple of the milder ones he recommended prior to my surgery and they didn't make any difference and they had nasty side effects.  

My plan is to work through the physiotherapy exercises designed to address these issues; to see a specialist physio in Philadelphia who has experience in this area; to talk to our friend here who is a neurologist about the neuromuscular issues - I have appointments with both of them this Tuesday.  Despite my raging hatred for needles,  I am also going to try acupuncture again - our neighbour is a doctor and he went to China to become an acupuncturist and has his own clinic now.  I also borrowed a TENS machine from my physio to see if it helps with my pain and it is actually giving me the most pain relief I have had since my surgery.  It is my new favourite thing, even if I look kind of strange walking about everywhere with wires dangling from me.... oh well, I guess I should be ok as long as I avoid airports...

Last week I felt completely dejected and really disappointed not to have something "easier" to do - if they wanted me to do 100 exercises a day for a year, that would be easier to deal with.  It's so very difficult to find a balance here as they want me to try to use my arm and to try to move it, but they also want me to limit my pain and the two are kind of mutually exclusive right now.  It's been a really hard week to get through but in between the tears I feel this furious determination not to let this beat me and I am trying (not entirely successfully) to focus on that.  I did tell the therapist I intend to do a handstand again one day..........

I think I have failed miserably on the "quick summary" but in my defence, I really could have written so much more!


Yesterday I saw a quote I loved on a photo frame:

Masquarading as a normal person day after day is exhausting

                       ~ Anonymous