Two Years Later...

February 28th 2012 - a date which will be forever etched on my body in the form of a 6 inch scar, and forever etched on my mind as The Day I Had My Surgery.

Scar Progress

Scar detail

To be honest, I'm very proud of my scar.  Initially, with my 18 staples (my first ever view of it - taken by my Mum just before the staples were removed so I could see it!) I felt it was a real battle wound - I felt like I had been cut up, drilled, and sewn, glued and stapled back together, so it seemed perfectly fitting.  However, very quickly (as the photos show), the wound healed very neatly.  Students at my physio's clinic declared it "looked like a plastic surgeon had done it".  I will admit that while I am absolutely delighted it looks as neat and almost invisible as it does now, I do wish the inside felt like it matched....!


But back to 2012...

Sometimes looking back, it seems a bit surreal.  I had multiple consultations with a couple of top specialists in Philadelphia, one of whom diagnosed me - a little tentatively, saying he had never seen this before, but he had heard of it - with detached rhomboids.  Actually, what he asked me in the appointment was "I assume you were born with rhomboid muscles?" 

Ummm, yes.

I didn't ever write about the process of my diagnosis.  Looking back now seems the right time to do so.  January 2012 was like a blurry trip through hell - an unknown, crazy month dominated by doctor appointments, diagnostic testing and excruciating pain.  It seems totally surreal when I think back.  Everything that happened in Kentucky, and after my surgery is incredibly vivid; but that January was dreadful.  

I think it was my pain really - it was so horrendous that when I first saw my Lyme Dr/ GP back in PA he took one look at me - he didn't even have to ASK -  and said "we have to get this pain dealt with".  That was the first time since the acute stage of my injury (in July 2011) I'd had any kind of pain relief. Yes, I'd been given various meds while in Edinburgh, but nothing was touching the pain - and nobody wanted to give me anything stronger. Later he told me that technically in medicine emergency surgery was 'life saving' but I was really just one step behind that.  I needed something done ASAP.  He was absolutely right.  Luckily I was finally on the right path.

Since August, I had been back in Edinburgh  at university working on my PhD (in Psycholinguistics), which honestly meant struggling into university for meetings and talks (on occasion being sent back home by my supervisor), and reading in bed - usually packed with ice packs and frozen vegetables, or hot water bottles and heat pads; struggling through an indescribable pain for which I had no relief.  I attended multiple medical appointments, both on the NHS (National Health Service) and private appointments and got nowhere.  Ultimately I ended up being told I would have to "learn to live with [my pain]", that I was "overly focused on pain" and "any damage will have healed by now".  Among other things. (More details in this post: Voice Within.)

This is what my right scapula looked like at that point in time:

Winging scapula (R)

As you can see, the right one is sticking out quite a bit more than the left one while both arms are in the same position against the wall in front of me.  What I know now is that where you can see the entire outline as it curves around and under is actually visible because there should be a muscle there.  Dr Kibler calls it a 'divot' - where the muscle has atrophied, and the 'hole' is visible.  You can also see it is in an entirely different position from the left one - with nothing to 'pull' it into place and hold it in the correct position in relation to my spine (which is also not in a good position here).  The scapula is a 'floating bone' held in place by 18 different muscles - when it is not in the right position, it really really hurts!!

Regardless of the unusual injury and diagnosis, even looking at this now (right now, for the first time in a long time), I can't BELIEVE that I saw so many doctors who told me there was nothing wrong with me! I simply do not understand why further investigation was not deemed necessary. 


I remember a Skype chat with my parents after an appointment with one specialist. It was a terrible appointment.  I was absolutely distraught - upset at being dismissed again, and at being badly treated.

On this particular Skype conversation, as we chatted through my sobbing, my Mum asked me: "Do you think there is something wrong?" 

I replied without hesitation, "Yes." I knew something was seriously wrong - I hadn't been able to use my right arm for nearly 5 months.  Even when I attempted small movements, I did not know if my shoulder was moving unless I was looking in a mirror.  It wasn't.

 "We'll get to the bottom of it somehow." she said.

http://www.pinterest.com/gmun22/scapular-muscle-reattachment-surgery/

I think I should send this, with my surgical report
 (and now my detailed nerve scans) to several doctors.

The other thing I remember from that chat is a ridiculous conversation with my Dad - probably trying to make me laugh (I think), and - one of those rare occasions - succeeding.

Dad: "It's a shame you don't smoke or we could send you some marijuana"

"Ummmmmmmmmmmmmmmmmmmmmmmm...................................???"
(Marijuana isn't legal in Pennsylvania, although I think perhaps it had just been legalised in New Jersey - with very strict medical restrictions - I have no idea what he was thinking... never mind international posting, customs etc.  And I'm guessing that's the only time in his life he has ever used the phrase "it's a shame you don't smoke". Ever.)

Despite the utter nonsensical comment in its entirety, my Mum and I both replied instantly with: "You don't have to smoke to use marijuana." 
(I'm really not sure why THAT was the part we BOTH saw necessary to point out first; there were many flaws in his 'plan'.... least of all being that I am very sure he has NO idea how he would get any!)

However, it was his next comment that has stayed with me and made me laugh...

Dad: "Oh yeah, you can bake it into brownies.  I saw that on Two and a Half Men."

My Dad's knowledge of soft drugs - brought to him entirely by Chuck Lore and Charlie Sheen.  

Oh well, he really did make us laugh.

Journey to Kentucky

Anyway.......... I was heading back across the Atlantic a few weeks later to spend Christmas and New Year with my parents.  I had work to do and permission from university to be away for 6 weeks.  When I got there, we decided I should go back and see the orthopaedist who had initially examined me when I fell, and followed up with me several times that past summer.  He is a really wonderful doctor, and a lovely person - he remembered me instantly, and was also instantly concerned about the way I moved my arm to shake his hand (I still hold my lower right arm with my left hand when shaking anyone's hand.  Some people really 'shake'; others kind of 'yank' your arm up and down - these actions HURT.  Absorbing any vibrations was a necessity!).  It took him about 5 minutes to point out multiple issues to my mum (who could see my back) about my scapula - its position and the fact it was not moving - 'scapular dyskinesia' (news to me - from an orthopaedic perspective).  

He recommended I saw their shoulder specialist; he told me he was very concerned at the level of pain I had (nobody accusing me of being "overly focused" on it there!) and recommended I had further nerve testing done, but by a neurologist (my  EMG in the summer was done by a physiatrist).

We have a family friend, another Dr K, - I will forever view him as 'saving' me - who is a top neurologist at a University of Pennsylvania hospital, specialising in neuromuscular issues. He saw me several times.  I may forever hold a grudge about the three EMGs he subjected me to (that's the torturous nerve test with the electrode-filled needles that are wiggled about in your muscles), although I do not think he could have been a better cheerleader throughout the tests!  At that point in time, I think it was suspected I had nerve damage and my muscle was paralysed because of that.  He later said to me (months after my surgery) he had "never seen a scapula not move like that".

He confirmed it did not seem to be neurological - very good news - but he didn't know what it was and wanted me to see another specialist, Dr W. I was told he was the 'top shoulder guy in Philly' by several people.  My own research showed that was supported by his research and publications in academic journals.  I was delighted - someone everyone thought would have the answers and could 'fix' me.  I saw him the following week - mid January.  At this point, I was still expecting to fly home to Edinburgh a couple of weeks later.

Dr W was the one who diagnosed the detached rhomboid muscles. Nobody had even mentioned rhomboids to me before then. Then he really dropped the bombshell: "There's pretty much one guy in the world who can fix that for you and he's in Lexington, Kentucky.  If I were you, I'd go see him in Lexington."  Mum and I were both in the appointment.  If our chins could have hit the floor cartoon-style, I think they would have.  He registered the shock;  answered our questions, recorded his notes while we were still in the room to give us time to think and ask any further questions; and he gave us the name of the surgeon in Kentucky.

I went to my physio in PA, Angelo, that week.  He had only good things to say about Dr W and he had been so sure he would have the answers and be able to fix me.  When we walked in, he asked how it went - was he going to fix me? "No. He says I should see someone in Kentucky."   He was about as stunned as we had been. "Kentucky? Who's in Kentucky?" he asked - apparently it is NOT normal, despite the size of the US, to be told to drive over 600 miles to get surgery.  To be honest, we were a little bit unclear on this at that point in time!

I pulled out a piece of paper. "A surgeon called Dr Kibler...?"

There was a 'knowing' look.  Clearly Angelo was familiar with the name Kibler (turns out anyone who knows anything about shoulders is - I did not know this at that time).  His response:  "If I want my shoulder fixed, I'm going to see Dr W; if he wants his shoulder fixed, he's going to Dr Kibler; if Dr Kibler wants his shoulder fixed, he's doing it himself." And that, apparently is the hierarchy of shoulder surgeons in the US.  At the time, I was still researching whether that really was just in the US and I could have the surgery somewhere in the UK, or whether it was indeed entirely true.  As the story continued, clearly, I discovered it was indeed entirely true - Dr Kibler had 'discovered' the injury and developed the surgery only a few years earlier. And, as I was told, he really did 'write the book on the scapula'.

And so after some liaising between doctors in Philly and in KY, we set off on our 650 mile journey/ adventure through Pennsylvania, Maryland, Virginia, over the mountains of West Virginia and into Kentucky.  

        

Tunnel through a Mountain PA

Welcome to West Virginia

         

Mountain Rd - as far as the eye can see
~2000ft high at some points!

Runway trucks!
This is a novelty to us Scots!

Welcome to Kentucky

I saw Dr K on Feb 27th 2012 for my initial consultation, which I reflected on yesterday. (Original blog post from 2012: 'Surgery Tomorrow' ;and I had my surgery on Feb 28th 2012 - original blog post: 'Ouch').

The surgery went well - it HURT like I had never imagined. So much for it can't possibly feel worse.... But surgically, it went well, I pretty much had exactly what Dr Kibler thought, and the repair was successful. 

Obviously, since then I have continued to add to pieces of the puzzle over the last two years, and have learned the degree of nerve damage I did sustain, I know now that there remains a lot that is still unknown.  Any further recovery is going to take a l-o-n-g time, even from now.

This image shows the muscles I had surgically repaired two years ago today:

http://www.pinterest.com/gmun22/scapular-muscle-reattachment-surgery/

This image is a pretty good image for showing exactly which muscles are where.  The big red muscle in the image is the trapezius (I think upper and lower - my lower trapezius was detached, this is still a big muscle).  On the right side of the image, you can see the middle and lower rhomboids.  These were the muscles that were detached from the medial (closest to the spine) border of my right scapula.  The lower trapezius muscle was "flapping" (surgeon's words) and the lower and middle rhomboids were "detached in multiple places".  Dr K thought the agonising 'pinging' sensations I had experienced several times since my fall were actually more of the rhomboids pinging off the bone, fibre by fibre, as tension on the remaining attached muscle increased.

I have my surgical report, which is really interesting to read, but the saddest sentence in it (for me) explains there were differences in tissue and scarring in the rhomboid muscles "indicating a failed healing response".  I don't think there is a sadder way of putting that. My body really did try.

When I came home to Scotland last September (2013) and went back to see my physio, R, (in Glasgow, where I am living now), one of the first things he said to me (as I presented him with a mountain of paperwork) was "I assume the trapezius was a partial detachment?". This was interesting, because Dr Kibler had explained to me that usually when he does the surgery, he can tug on that muscle at the spine of the scapula (also shown on the image) and feel some resistance lower down the medial border where the muscle is still attached; but with mine, there was complete detachment and it was "flapping".  So, the answer was no - it was completely detached. R said "you've blown my brains out".  He told me, and then my mum and dad, when we went back out from his consulting room, that he just couldn't even visualise how it was possible to do the damage I had done.  This is a guy my Dad considers the best physio he has ever worked with/ been treated by in his professional (soccer/ football) career.  Someone who treats top level athletes, dancers (his clinic is next to a major theatre in Glasgow) - and I've said before, every gymnastics injury I had.  It is truly an illustration of just how unusual and complex my injury was - but that should not justify the fact I was simply dismissed by multiple doctors.  

R frequently tells me that I still have a lot of damage; a long way to go; lots of work to do - and he works with my muscles gently and carefully, still careful to ensure I know 'pushing it' is not the way to go.  I would not trust any physio here, more than I do him, to treat my shoulder - and now that he has 'got his head around' just how crazy my body is, and has 'seen' in his head what my muscles/ tissue are like and what position they are in (different every time he sees me apparently), he treats me better than I imagine anyone else could - especially because he has treated me for various injuries my whole life.  But he is very clear: anyone who tells me they can 'fix this' (the nerve issues) doesn't know what they are talking about.  This is very much (still) one step at a time.  It's ok, I know that too.  

http://www.pinterest.com/gmun22/pain/

(Like nerves)

My point in explaining all that is really that R is to the world of physiotherapy what Dr K is to the world of scapular surgery.  They are both absolute geniuses at what they do, with a wealth of experience, and I would estimate them to be close in age.  I think they would get on very well with each other.

It's interesting for me to have been so 'in' everything for two years and the fact that my progress has been SO slow is something I have had to accept - learned while on a physical and emotional rollercoaster.  But in that time, I have been learning with everyone else ("This might not be great for you, but we're learning lots." said Dr Kibler, the last time I saw him.) as time has s-l-o-w-l-y passed.  To see it from a fresh perspective, through R's eyes, and also to an extent from my new GP's point of view, I have been reminded of just how unusual some things are.  I feel like it has opened my eyes a bit (again) too.

I have become used to certain things - for example this week my muscles - for a reason entirely unknown to me - have been spasm-ing severely.  They have done this before, but not for a few months.  In the past week to ten days, my pecs are so tight, they are pulling on my top ribs and the head of my humerus, causing lumps to form; my biceps tendon also has palpable marble-sized lumps again; the superior angle of my scapula is very close to poking through the top of my shoulder, and I have one, maybe two, lower ribs at my back which seem to have dislocated again.  Today I had to call my doctor's surgery to make an appointment and request extra anti-spasmodics and explain I'd been taking more than I'd been prescribed (which is a lot less than 6-8 months ago - but of course, they don't know that) "because my muscles have been spasm-ing, I have lumps on my bones and they'd caused my ribs to dislocate....But that's ok, it happens."  I added as an afterthought. Yeah, if that doesn't sound crazy, I'm really not sure what it sounds like....!

My definition of the word 'normal' is definitely NOT 'normal' anymore.

http://www.pinterest.com/gmun22/inspiration-for-recovery/

I guess, if anything, looking back over the past two years really has been a rollercoaster.  It has been a learning curve - admittedly for everyone who has been involved in my treatment; and continues to be so.  Looking back specifically two years ago today to my surgery seems like such a small part of something so much bigger than I ever imagined it would be.  And ultimately, no matter how many people have (very kindly) told me they think I am 'brave' or 'an inspiration' or that they 'just couldn't do that' - none of that is true.... Ultimately, you do what you have to do; what anyone would do.  You take what life throws at you and you just keep going, hoping things will get better.

http://www.pinterest.com/gmun22/inspiration-for-recovery/

“That which does not kill us makes us stronger.”

       ~  Friedrich Nietzsche

Looking Back

http://www.pinterest.com/gmun22/

This time two years ago I met my surgeon, Dr Kibler, and shoulder therapist, Aaron Sciascia in Lexington, Kentucky for the first time.  At this appointment I was asked how many doctors I had seen, specifically about my shoulder, prior to seeing Dr K.  I counted 15 (not including multiple physiotherapists, nurses and other health professionals).  Apparently the average was 4.  My high number was partly explained by some duplication because I had initially fallen in the US and then travelled home to Scotland a few weeks later;  but mostly it was because the 13th doctor had been the one to diagnose me and refer me to Dr K.  The few before him (all in the US - on an intended 6 week visit which turned into a 21 month stay) had set me on the right path, narrowing down specifics with each specialist, and therefore pointing me towards a diagnosis; the few before those had just been downright dismissive (and since the saying goes "if you can't say anything nice, don't say anything at all", I'll try really really hard to stop with "dismissive".  There are many other words that come to mind.... They all apply to Dr number 14 as well - he was an, ummmm..... 'blip'.... which is really a nicer way of saying I wish my Dad had punched him. That was me trying to be nice.)

Anyway.... Dr K was the first person who TOLD me where my pain was instead of asking me; who TOLD me what made it worse; what made it better.  He knew WHERE the pain was and EXACTLY what movements increased my pain; what movements were impossible; and what (slightly) relieved it. He also conducted his entire examination far more thoroughly than any other doctor I had seen, yet with the least torture! He was the first doctor who was not completely puzzled, perplexed, or looked at me as if I were crazy, or perhaps had two heads, or even worse, that I thought I had an invisible second head nobody else could see.

After seven months of sheer FRUSTRATION, the relief was overwhelming.  I have been in touch with a few other patients too (the wonders of the internet) and each of them describes similar feelings.  I have not come across a single person, or page on the internet, saying anything negative about Dr K.  I think these are all a true credit to Dr K and his team, and the level of compassion, professionalism and respect they show each and every patient.  I think the very fact we drove 650 miles to see - literally - the only doctor in the world who could give me the use of my right arm back, and he firstly thanked us for coming to see him, sums him up perfectly.  A true Southern gentleman.

Reflecting on all of that makes looking back on that day such a positive memory.  It was filled with hope, understanding and promise.  It was the most positive thing to have happened since I had fallen, 8 months earlier.  

Of course, many things have happened since; other issues have come to light and other problems have had to be addressed.  It is difficult for me to truly separate these because they are inextricably linked when it comes to my overall health, pain, and physical function.  But when I can think about that one day in isolation it was such a positive day: it really was.  And even knowing everything I know now - every single piece of information that has challenged me (and my physios and doctors) since the surgery; every single thing that has made me cry with pain, with frustration; everything that has culminated in this big giant  "I DON'T KNOW", regarding my life, still doesn't take away ANYTHING from that day.   Ultimately without Dr K, without his surgery, and without that day - that week really - I would have no potential for getting my right arm back; I would still be in massive amounts of pain - maybe even worse than I have now (although see the picture below for my true feelings on that one).  

That appointment DID give me hope; something that was beginning to elude me.  

In that initial appointment, Dr K asked me to rate me pain on a scale of 1-10.  Most people with 'chronic' (technically anything lasting 3 months or longer) HATE this question.  

http://www.pinterest.com/gmun22/pain/

For me, it's always been difficult to understand the question should be subjective - as people keep explaining to me.  It isn't necessarily the worst pain in the world, it is how you feel ON THAT DAY, or sometimes more generally with THAT injury.  It always feels like an exaggeration to say anything above an 8, but it genuinely impacts my ability to function - in every way; it makes me cry - for no other reason than it hurts.  Sometimes, when I have severe pain and find myself on my knees, clutching at my arm and realise my cheeks are burning and wet with tears, I ask myself if I am crying because I am frustrated, or even having a bad day and feeling a bit sorry for myself (which, yes, happens sometimes); but when I am attacked with the overwhelming, bring-me-to-my-knees type of pain, the only thought in my head is OUCH.  I am not thinking of anything else (it must be the only time that ever happens) but how painful it is.  I am still quite sure there are other pains in the world that are worse than mine; but having 'learned' how pain is supposed to be assessed, those 'attacks' make my pain - in that moment, at its worst - a 10.

I have found this to be the most useful pain assessment chart (I think clicking should make it larger, otherwise the original image can be found at the link on the caption):

from: http://www.ebnurse.org/index.php?id=78

I was always inclined to imagine the worst pain I possibly could (as per previous blogs) and then try to fit my pain in there somewhere.  This chart's descriptions - for example 'bedrest required' helped me to fit it into a more subjective context.

So when Dr K asked me how I would rate my pain, my exact words were:

"I don't want to sound like a drama queen, but sometimes it really is a 10"

He understood.  And he said the best thing I could possibly have heard, and never expected.  He told me I was "tough".  I told him (crying - really tough!) that I used to think I was tough before this happened. 

Looking back, that changed view of myself was down to damaging appointments with other medical professionals.  Ones who told me I wasn't trying; I was too focused on my pain (gee, please let me rip your muscles off your scapula and see how easy it is to think about anything else.  Seriously, please.); my questions were scorned, ridiculed, cut off; I was told so many things I knew to be untrue but felt I was not allowed to question them - and on the odd occasion I managed to summon up the courage to ask the question bouncing around my head, I was yet again dismissed; spoken to like an idiot - one medical professional even visibly rolled her eyes while answering one of my questions. (I would add, there were times my mum - herself a medical professional - and/ or my sister were in appointments with me; this made NO difference; they were treated exactly as I was.)

Looking back on that always makes me think of this quote from Matilda - a terrible concept to associate with any kind of 'care', but nonetheless, exactly how I felt:

http://www.pinterest.com/gmun22/books-words-reading/

I am delighted to say there was not a single moment I spent in Kentucky, or Pennsylvania, receiving treatment for my shoulder that brought any of these feelings to mind.  And I am currently very optimistic that I have left them entirely in the past.

Without revealing any of that, although clearly exhibiting my emotions, Dr K told me it didn't matter what anyone else had told me, I was TOUGH. (Apparently it's not an unusual concept among some doctors to think 'I don't know what this is; therefore my patient is crazy/ a hypochondriac/ attention seeking/ weak female who has no idea what pain is.' Apparently this was not the first time they had encountered this; nor did it surprise them.) 

Dr K told me that they didn't know why yet (I was only surgery number ~170), but that this was the worst injury he encountered in his orthopaedic clinic - in terms of severe pain, severe disability and lack of function.  It was a complete validation of everything for me.   A reassurance that I was not going crazy - and I don't even think I realised how much I needed that until I got it.

And then he said this whole process was going to be tough, and I would need to continue to be tough. That didn't seem like a particularly difficult instruction....

http://www.pinterest.com/gmun22/inspiration-for-recovery/

... I quite honestly couldn't imagine it being any worse than it was at that point in time.  Bring it on, I thought. I can do this. Just fix me.

http://www.pinterest.com/gmun22/inspiration-for-recovery/

Sometimes we are SO very lucky that we cannot see what lies ahead.  As the days, weeks and months followed on from there, "tough" became something else entirely.

http://www.pinterest.com/gmun22/pain/

And now, looking back over two years, I still remember ever single detail of that day; of that appointment; of how I felt. I remember the relief - the expectation that I would be 'fixed'; that I had my answer.

Of course, life is never really that simple (especially not mine, it seems) and this picture seems to say it better than I ever could:

http://www.pinterest.com/gmun22/pain/

And so the mystery solving continued, as my blog has detailed over the past two years.  But looking back on February 27th 2012 and my first meeting with Dr Kibler and with Aaron - despite EVERYTHING that has happened since then - I am still very grateful for that day; for the wonderful people they are and for the major part they played - and continue to play -  in my (ongoing) journey.

http://www.pinterest.com/gmun22/inspiration-for-recovery/

As I write this two years later, I wonder how I would have coped if I had known the long and winding path my recovery would take.  I cannot lie and say it has been easy - there is no part of it that has been easy: physically, emotionally, or psychologically.  Every single part of it has been a challenge, but I am still here, battling on, and determined to improve as much as I possibly can.  Right now, I don't know how much that is - nobody knows what to expect.  Perhaps that is the most difficult: the inability to make plans, to imagine what lies ahead because I genuinely don't know.  If nothing else, this experience has taught me to have patience (I'm not saying I've been good at it....); it has made me realise many people rush from one thing to the next that they must miss so many things in between.  Out of everything, I hope these are things that will stay with me.  I hope I will remember there is much more to life than rushing from one place to another - there is always something to appreciate; and there is always time to appreciate it.

http://www.pinterest.com/gmun22/scapular-muscle-reattachment-surgery/

Adopt the pace of nature: her secret is patience.

     ~ Ralph Waldo Emerson

Inspiration

Unfortunately last night's little 'incident' has ramped my pain back up again so today when my alarm went off and the pain came into focus, I took my tablets and went back to sleep.  Then just alternated between ice and heat for the rest of the day.  It's not the worst pain I've had, (although when I try to reason this out with anyone medical, they always tell me pain is subjective, in that moment - e.g. - don't compare it to the day after surgery; think about right now), but it's so inhibiting. When it was my ankle I could stick a support on it, use crutches and get on with things; my wrist - a cast and/ or sling and pretty much the same. But it's all-consuming pain, it frustrates me to no end that I can't just over-ride it...... and that usually leads to a 'pain happens for a reason, listen to your body' conversation which, unfortunately, is always right. I just feel like a stuck record saying I wish I could just do a hundred exercises a day instead of all this resting.


It's difficult to explain to people.  I look ok - most of the time, when I don't, I generally am not seen by other people, or I do this:

From Pinterest

....and add a cocktail of meds, energy drinks and any form of caffeine available to the makeup.


On days like today, when resting is the only option (that doesn't really make it an option, more of an order - and that's what it feels like: an order issued by my body!), I reflect on things, so my tea bag tag of the day: "inspiration is an unlimited power" seems like a good choice.

And I found lots of inspirational quotes and images on Pinterest, and enjoyed looking through my other ones, but my biggest inspiration today came from somewhere else.  Today I did something I haven't done for a while and Googled "scapular muscle reattachment surgery".  I used to search now and then, wondering if I'd find anyone else writing about it and today I did.  (I also found out that Dr Kibler and Aaron have had a major article about the surgery published in this month's issue of the Journal of Shoulder and Elbow surgery, but it deserves its own post - for another day).

I came across a blog of another story of scapular muscle reattachment surgery called: My Impossible Medical Journey which is truly inspiring. The author, Megan, has had MANY surgeries, including work by Dr K, including scapular muscle reattachment, but she has many more surgeries to face as she has lots of other issues going along with those - all written about on her blog (the name links to it).

I also came across Elizabeth's Shoulder Updates - another story of scapular reattachment surgery, which seems to be a really successful (although long in terms of her injury) story.

Both blogs are inspirational in different ways; and written by truly strong, determined people.  And of course they both make me reflect on my experience too.  It's really interesting to read about other people's experiences.

 

Both these girls are writing blogs that are sharing so much information and inspiring others.  Hopefully there are other people out there that will find the information helpful - but the three blogs (including mine here now)  illustrate how different everyone's story is - so I wanted to share these blogs because I think they are inspirational, and also because it might help other people by allowing them to compare different experiences.  Like everything else, everyone who has this surgery (or any major life or health issue/ challenge to deal with) has it for an individual reason, and recovers in their own way, and then that fits in with all the associated issues that have also been shown to be highly individual - as more people share their experiences, hopefully others can see where they fit in too.

“Each player must accept the cards life deals him or her: but once they are in hand, he or she alone must decide how to play the cards in order to win the game.”

   ~ Voltaire

The World's First Scapula Cake

 (in cyberspace anyway)

One year surgery anniversary!

The world's first scapula cake... according to Google & Pintrest searches

I am actually writing this from physio just now... where we have all enjoyed the scapula cake!

Later update:

One year ago today Dr Kibler reattached my lower trapezius and rhomboid muscles to my scapula.  It has been one rollercoaster of a year and I still have a lot of work to do before I can handstand again... But I have made progress; I am on the road to recovery (bumpy as it may be)... so what better way to celebrate than with cake?! 

 All the baking, mixing and icing made by my Mum (and as delicious as always!) and I managed to do the design myself - mostly left-handed (can I consider acquired ambidexterity to be a benefit of the surgery?!).  I did search online for some design inspiration... apparently nobody's ever made a scapula cake before... imagine that....!  Between appointments at my physio clinic and doctor's surgery today, the cake is now ALL gone!

I wish I could have shared the cake with everyone who has helped me this last year, I am especially thankful to Dr. Ben Kibler and Aaron Sciascia (as well as many additional staff members who dealt with me while I was under anaesthetic/ barely conscious and on follow-up visits) at the Lexington Clinic in Kentucky; Dr. Sami Khella and Marty Kelly, DPT at Penn Presbyterian Medical Center (University of Pennsylvania); Angelo Labrinakos, DPT (and all his wonderful staff) at Kinetic Physiotherapy in Downingtown, PA; Dr. Len Schuchman my American PCP ('GP'); and Dr. Gerry Williams at the Rothman Institute.  

I'm sorry I didn't get to share the cake with you all... I'm sharing the photos instead! I am sincerely thankful for all your ongoing help... and I will be even more thankful when I win my (proposed) cartwheel competition with Angelo one day!

"The greater danger for most of us is not that our aim is too high and we miss it, but that it is too low and we reach it."

  ~ Michelangelo

Chaos

Tomorrow marks one year since my surgery.  When I look back over my blog, and my diary, to this time last year I was filled with such optimism - a sense of excitement that, finally, I was going to be 'fixed'.

It's really hard for me to compare then and now.  If everything had been the same, and I had still to make the same decisions, I know I made the right decisions and would make them again - without the surgery, I would never have regained the use of my right arm.  But honestly, I thought I'd be handstanding by now!

My case has been unique, at least... I suppose... my doctors tell me it is "fascinating" and "interesting" for them, and that they are learning from it so at least I feel it will help someone else with a complex case in the future.

And I am getting there, it was probably better that I did not know how hard it would be, how long it would take, or, worst of all, how much pain I would continue to have now - one year on.  But nobody knew how my body was going to respond.  And nobody knows how much of a part Lyme plays in recovery from surgery either - there is some speculation, but there is no solid scientific evidence that gives any proven information on possible effects.  It is easy to feel low, to feel I want to make faster progress, but I always remind myself that I would have made exactly the same decisions if I had to do it over.  And at least that makes me realise that even although I wish I was more in control of it all; I wish I could speed up the healing; I am in the best possible place I can be in, given the circumstances I had to deal with.  

At physio on Monday, I was complaining of increased headaches and neck pain and after a thorough assessment, Angelo said, "your neck's in the wrong place".  Great... another super-weird thing I've been told this year. He told me I am trying to do too much again -  a small improvement is exciting, but then trying to push it too much can have a negative effect.  Sometimes it seems never-ending, but all I can do is keep at it, work hard (as appropriately as I am allowed) and still give my body time to heal... which, it still needs lots of, apparently!  One of the hardest things is accepting that trying to do everything for myself is not the best thing for my body and accepting help with day-to-day things (as simple as filling or pouring a heavy kettle, even left-handed) is something I really need to do.  It is just so difficult to feel like I have to say "I can't do this" a hundred times a day.  I have always been determined and independent and I hate the feeling of failure and inadequacy that produces.  At the same time, I then have to go back to the advice I was given last year about thinking of resting as "enabling healing" and that (sometimes) helps.... a bit...

I saw this on Pintrest, and given my life over the past year has been chaos (physically, emotionally, actually I think in every way imaginable!) I am therefore hopeful that this magic little bit of wisdom from cyberspace is correct and great changes will come from this.

Gotta keep some hope...........

It also reminded me of one of my very very favourite quotes, which I used exactly a year ago too:

“You must have chaos within you to give birth to a dancing star.”

   ~   Friedrich Nietzsche

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