Friday, February 28, 2014

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



12 comments:

  1. Gosh what a journey thank you for sharing this.
    As muscle weakness was one of my Lyme symptoms and I still have problems across my shoulders upper back I found your explanations about those muscles interesting although clearly your situation is horrendous by comparison.

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    1. Thanks Joanne. I have some images of very very simple, gentle exercises - I am not allowed to do anything with tension/ weight bearing etc. - that are supposed to help my muscles begin to strengthen without putting any pressure on them. I can pass on the images if you think some gentle exercises might help - I especially have to carefully strengthen my neck muscles, because they are all connected - and the head is heavy! I actually found my Lyme-type headaches eased as some muscles gained a little strength - less tension. Although, it is very difficult for me to distinguish between certain pains now.

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  2. I was in the process of explaining my long journey through scapular dysfunction to a friend when I bump into the picture of your scap battle scar. At first I was stunt, thinking to myself that I did not own a lacy pink top...mistakingly thinking it was a picture of my L-shoulder, one of many the doctors took. I also had a scapular surgery with Dr.K, 4 years ago for a torn trapezius, after a four year of struggles and dismissals. I also travelled hundred of miles multiple times to Lex (which I hold dear to my heart for their hospitality), wore the red ball sling, with the only exception that I was not so lucky to have knowleageable referring doctors to lead me to his team. I share your frustration of the doctor's merry-go-around and the elation of finally finding someone who sees wings everyday and behave with outmost professionalism. I found adaptations to maintain a busy active working life, with travels and all although It's not always easy. I think we have a lot to share, maybe starting with some scap-friendly providers on the East Coast. Thank you for posting your story. There is no such thing as "just a small wing" and there are a lot that can be done: every little detail makes a difference. It's very rewarding to hear that you were diagnosed in a matter of months rather than years and hopefully this gap in diagnostic will soon be reduced to a matter of hours or days in the near future, as any other orthopedic injuries.

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  3. Hi Maggie, thanks for your comment. I hope you are making good progress, it sounds like you are maintaining a functional life, which is great. Please get in touch: outofthelymelight@gmail.com if you would like to exchange info, or you think it would be beneficial; it has definitely been great to connect with others who have experienced the same surgery and got in touch through my blog.

    I do attribute my 'early' diagnosis to a very good family friend. We are luck enough to know someone who is a neurologist at one of the top hospitals in Philly and he performed my EMGs and got me to see an ortho friend of his who knows Dr K well. I do not think I would have been diagnosed as quickly without him, he very much took on my cause (in fact, Dr K actually said "that's quite a neurologist you have there!" when I met him in KY for the first time). I honestly don't know where I would be today without him. Despite his genius and esteemed position, he told me the year I had surgery that he presented my case at different seminars and nobody got the diagnosis correct - I also love him for simply raising that awareness. I think I have so much respect for those doctors who are able to say "I can learn something here, and so can others" - those are the ones making the changes.

    I did find out about a more nuanced nerve injury 18 months after my surgery when things were not progressing as expected and my pain was horrendous. Unfortunately, this still makes living a functional life close to impossible - but at least I know why, and hopefully following my current protocol will bring success eventually.

    It's been very helpful (from each side) connecting with others who have also had Dr K's surgery and have got in touch through my blog, so please drop me an email if you feel there is info we can share. :-)

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  4. Greetings, I have been reading your shoulder ordeal and I am another who has had the repair with Dr. K. March 7, 2014 was my date so I'm not quite 3 months post op yet. Quite a journey to say the least, but you have had such a tough road. You project positivity and courage in your writings and I commend you for maintaining that despite your struggles.

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  5. Hi Jennifer, congrats for just getting through the surgery! As Dr K says, you have to be tough just for that! I hope you are healing well and things are progressing as expected - feel free to email me outofthelymelight @gmail.com if you'd like to get in touch privately; or if you'd like to share your experience a bit more publicly - it has been interesting hearing from others who have also had the surgery - some with straightforward recoveries who seem to be doing really well; or who have found the final piece in their puzzle; and others who are still on quite a journey...! I hope you heal fast! Sending positive healing vibes to you! G

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    1. Thankyou for posting your journey online,it's been really helpful. It's really hard to find any Information on this injury anywhere. I was diagnosed with scapular muscle detachment back in May 2015 at one of Dr K scapular masterclass that he now delivers every 2 years in the uk. I'd been passed around to many doctors for over 3 years before I eventually got to see Dr kibler. I had the surgery on November 2015 at wrightington hospital northwest England UK. As you've said the recovery is really hard/painful lots of physio therapy. What is your arm strength/movement like now? The last 3 months I don't seem to be progressing at all and pain has got worse. Any information would be greatly appreciated .

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    2. Hey Adam,
      Drop me an email at outofthelymelight@gmail.com - I am more than happy to communicate a bit more specifically about recovery. And honestly curious about your surgery, I have struggled to find help when I've been home in Scotland and have regressed in those times. I would love to pass on details of Dr K's visits to surgeons and physios who have been at a loss with me. Hopefully it will eventually be helpful to many people. Briefly, plateaus are normal, and some people have other issues going on that means it takes a bit longer. Personally (mostly documented here, somewhere), my injury was WAY more complex than 'just the muscle detachment - which as you know is bad enough on its own. I really needed multiple visits to Dr K & then he referred me to my super 'scapular physio' who is familiar with the procedure and has treated other patients too - and he still calls me 'an outlier of outliers'. So my injury was really complex (the easiest explanation I use if I'm telling people is that one physio said, "if you didn't have skin, you'd have ripped your arm off" - it sums it up! Obviously if you are 'new' to the surgeon/ physio and a bit complex, it takes time to work out further issues, if there are any..... in my experience, and from what I was told. But believe me, I share your utter frustration. It IS hard. Feel free to email if you'd like. Best wishes, G

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  6. Congrats for your successful surgery and hope for the early recovery. Thanks for sharing your journey to the surgery and recovering from it.

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  7. Thanks for sharing your powerful story, what is Dr. W's full name? I sent you a private email as well...

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  8. Did you have previous mri's at all? I'm wondering because I have been having pain in my scapula for over 2 years after a car accident and no one can find what's causing it and it's getting very frustrating. They said my next step is to see Dr. K.

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  9. Hello Adam, G

    Thank you both for posting about this as I am recently diagnosed with this. Adam - I too am in the UK and possibly having surgery with a surgeon who was trained by Dr Kibler at that hospital. I wondered how did you cause your injury and what were your symptoms before you had the surgery? How are you feeling now and have you been able to return to any kind of sport?

    I am not sure what caused mine to tear I don't remember it happening, I just woke up in the night with the pain which got intense. I think I must have done it in the gym weight training. I have gradually improved over the last few months, the pain is not so intense and I still have use of my arm, which a lot of people mention they don't. My main problem is a constant pain. I am wondering whether the surgery is really worth it, and there is not really a lot of advice out there.

    Has anyone improved from the surgery? What I read seems quite negative. Thanks, L

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