Perfectly Imperfect

November mindfulness: Day 4 - 'Perfectly imperfect'

Taken from my instagram post:

#mindfulnovember  #perfectlyimperfect  #day4  #mindfulness  #scar  #18staples  #scapularsurgery #scapularmuscledetachment  #shouldersurgery  #myscarmystory  #notoplasticsurgery  #bodyshaming  #lovetheskinyourein  #blogger  #outofthelymelight 

It wasn't difficult to think about what 'perfectly imperfect' made me think of - my scar.... obviously! Although this isn't exactly what I envisioned writing...

Scars are my battle wounds. From injury to surgeries & beyond, they are part of me; they remind me how strong I can be - they are a sign of strength and healing.  I blog to spread awareness of a rare injury; to show anyone can rise to life's challenges; to tell MY story; and hopefully, to help someone else.  Recently I posted images (see picture 4 below) following cupping treatment showing my scar, plus swelling & bruising, as well as a skin reaction to my PICC line dressing adhesive (for Lyme disease IV treatment).   

A plastic surgeon commented under my photo - maybe I would be interested in her 'regime' (which from her instagram page seems to be plastic surgery and botox). My first thought was why is a random doctor commenting on this? Occasionally I've had comments or mesages/ emails specific to my surgery (it remains, over 5 years later, relatively unknown in the world of medicine), but this was different.  I did look on her instagram page - it's filled with very stereotypical photographs and commentaries of facelifts, botox and 'we can 'fix' you'-type stuff. I did not look further on her website, as suggested - I'm not interested, but the bigger implication was: this imperfection could be fixed. 

Not something I have ever thought about, looked for, inquired about, written about, etc.

I'll admit this hit hard.  I have never hesitated in sharing my photos, or talking about my surgery; and I have built relationships and networks with other patients who have contacted me over the past few years. Suddenly I glimpsed it from a different perspective. Why? Does this doctor think I should hide my scars? Is it appropriate for doctors to target other women (or anyone?!) on social media?  Is it ethical? Is 'scar shaming' a thing I've naively avoided thus far? In that initial moment I was stunned: shocked, then quickly I felt angry.  Have I been cyberbullied by a doctor?  I am not ashamed - I blog and post photos of the good, the bad, and the ugly. Reality.  I don't intend to change that.   

2012-2013
Pre-surgery -> healing over 1 year
(Bottom left, 2014, pre-surgery number 2)

October 2017: post-cupping therapy

October 2017: 1 day after cupping therapy
Can you see my scar?
Can you see my symmetrical scapulae?
I.e. the visible evidence of successful surgery...

Collage from instagram with plastic surgeon's 'innocuous' comment

It's not blatantly nasty, but after looking at the instagram page (with no interest in browsing her website), it's very difficult to draw a different conclusion.  I decided not to reply.  Now, my instagram post, and this expanded blog post is my reply.  It's not a reply to the doctor, it's my reply to anyone with the mindset that any part of the body is imperfect and needs to be 'fixed'.

I was just going to ignore it until I stumbled across this Buzzfeed article about actress Sarah Hyland ('Haley' from Modern Family) the following week. She has a health issue and a magazine published an article speculating she had plastic surgery.  Buzzfeed relayed her response (via twitter) to the magazine where she (rightly) raged at doctors speculating over her 'potential surgeries' and made clear the 'changes to her face' they were commenting on (there's another controversial topic on its own.... how about people just stop doing that?) were the result of "life saving medication".  (I don't usually read celebrity news/ gossip, but apparently she has suffered with kidney disease since childhood and it was not 'new information'.)  The timing was serendipitous.

I may not be famous, I may not have much 'reach' with my comments or my blog; but I think it is every bit as important for anyone, whether targeted publicly or quietly, like this, to stand up and say this is NOT OK.  If one person reads this and takes away that message, then it is worth saying. 

And, FYI, my scar looks fucking awesome. My PT says it looks just like a plastic surgeon did it. 😏

31 Dec 2014: Shoulder surgery 2 - capsular release

March 2012:  <2 weeks post surgery

End of March 2012: 1 month post-surgery

Incision healing progress March 2012 -> March 2013

   "The scar meant that I was stronger than 

what had tried to hurt me." 

~ Anaïs Nin ~

Stitches, funky bandages, fainting and more...........

(I started writing at the beginning of the week; bits & pieces added throughout this week - remaining update to follow...)

I am opting mainly for a picture-story update today.

A week ago, I went back to the surgeon to get the remaining stitches out.  This is how they looked prior to the appointment.  I still hadn't seen what was under the paper stitches on my wrist:


I still had stitches between the thumb & index finger; the centre-bottom of the palm, and  the one along my wrist:  

And still loads of ink, making it hard to see!

Since the last visit, I had added a bit of style and colour to my incredibly fashionable splint - who knew they made designer plasters?!

Too fun not to share! Well, if I had to wear a bandage...
.... and colour therapy, right?!

And back to the clinic.........

The one on my wrist under all the 'sticky stuff' (going with that 'technical term', since I got a partial arm wax as it was removed) was pretty cool - the stitches were under the skin, hidden.  There were just two long 'threads' at each end, one was cut then the other pulled everything under the surface out with it (you can just see one in the photo, I had the 'oh can I take a photo?' thought almost too late).

This was pretty cool - the stitches were inside and each end had a 
thread sticking out like the one on the right - she just cut one 
end (then I took the photo) and pulled out the remaining 'tail'  

It looks fine, but considering it was stitched from the inside - and my comparison
is how amazingly fast and neatly the scapula incision (with 18 STAPLES) healed -
 it doesn't look quite as neat as I thought it would - yet.  Lots of aloe vera.

The physician's assistant asked me if I'd had any more "dizzy spells".  "Nope - it's never happened before and it hasn't happened since." .......... until 5 minutes later when she took the stitches out of the incision on my hand and the room  began to swim, I was suddenly drenched in sweat and throwing of layers of clothes around. Well, as much as I am able to 'throw'.  Or undress.  Mostly a scarf and cardigan awkwardly hit the floor.  At least I didn't.  

I DON'T KNOW WHY!!!

BUT I DON'T LIKE IT!!!

Stitches out:

If you zoom in, there's still some in there, apparently
they "grow out". Not especially fond of that info.

The one between my thumb and index finger had been seeping (bleeding really) even while stitched.  My physio told me to clean it with soap and water and keep it covered.  The one on my hand also bled - it wasn't totally joined and pulling the stitches out hurt more than any other time I've had stitches removed. Actually, on all previous occasions (4 or 5) I've never felt more than a slight pull.  Maybe that's why my head started swimming........?  Also not something I've experienced before and I'm definitely not a fan of that.  I've had the 'blackness' that I've written about before, usually from pushing through severe pain, but that's an entirely different sensation.  It still wasn't the sorest part of my body though - unfortunately 95% of the time, my right scapular area still wins there.

HOWEVER..... Unfortunately, this week, my left hand, my 'incidental' little injury, my 'minor' surgical procedure; my 'nothing to worry about - let's just get it over with' little old silly 'wrist sprain' with the simple, happens-all-the-time surgery has been making itself felt emphatically.

The day after the stitches were removed, my hand swelled, with hard lumps; felt like it was on fire; the incision sites became more painful; and I found it more difficult to move (as in while pressing hard and painfully with the other hand 'difficult to move' because of hard bumps; not a pathetic 'oh it's a little bit sore I can't do that exercise' hard to move. Just to be clear!) 

Top: swelling & discoloured hand  (not quite so clear here)

Bottom: All natural, late-night homemade antimicrobial concoction on dressing:
allicin, colloidal silver, tea tree oil and samento

Which worked really well!  The next day, it looked and felt so much better:

Really!
Swelling was reduced, not as hard, the redness was gone & the incision at my thumb
looked like it was properly healing after a few days with paper stitches

Panic over; disaster averted!  Or so I thought...........But that's pretty much where I ended this blog, and typing takes ages right now -  and sleep is much needed (although not forthcoming!) so until the next one........

Surgery follow up, Hogmanay memories & a kaleidoscope of butterflies

Disclaimer: First, I'm scrapping the 'blog a day' for January thing because it's clearly not been very successful!  I am honestly really exhausted after my surgery, I'm on strong pain medication and trying very hard to push my body through the necessary exercises as well.  As a result, I have developed a new, longed-for skill: falling asleep.  I just didn't really long for it to happen in the car (as a passenger), at physio, during Skype conversations, during any conversations........ My exhausted brain and body are not feeling particularly inspired right now, but I'm working on it!  Maybe February will bring with it some colourful inspiration...


SO................. surgery follow up - thank you to those who have sent emails/ messages/ said nice things, or asked how I am..............

................................so here are the gory details :-)

I saw my surgeon last Monday to get my stitches removed and for the general no oozing/ burning/ icky incision areas; no fever; no other weird stuff check.  Apart from the unexplained vomiting (& the surgery!) I seem fine, or more accurately, 'as expected'.


Stitches were removed from my three tiny little incisions which are healing nicely and look like they will barely leave a mark.  But believe me, these tiny little incisions are deceptive!  I'm using pure aloe vera gel, which is what I put on my first scar too - which is about fifteen(ish) times the size of these and looks great; so I think they'll pretty much disappear - top right photo shows how good it looks already.

Top:very odd but effective & protective 'sponge-ball' dressing; stitch on front incision next to same incision with stitch removed - barely going to leave a mark!

Middle: trying to get some perspective on front/ back incisions as 'release' was deep between these

Bottom: tiny back incisions with stitches (mainly there because taking photo out really messed up Picasa's auto-collage thing, so extra incision/ stitches photo beat the bloody gory ones!);
bruised inner elbow - guess they injected something here too!; hand - I don't really bruise that much but look how THICK the needle gauge was -  nurse told me she was "glad it went in first time, I couldn't see the vein" - I'm glad she told me that after it went in - not great when they say "big pinch and try to stay very still"!

Oh - and the permanent marker is the surgeon's initials.  You'd think creating one that maybe just evaporated after 12 hours would be more helpful than a permanent marker on an area too sore to scrub!

Back to my deceptive little cuts.  I knew it was never going to be like Dr K's surgery in Kentucky - open back surgery versus arthroscopy, definitely no contest as to which is preferable; but a lot can be pushed and pulled and stretched and cut through these neat little incisions.  I went into this surgery feeling different - in many ways - from the first one.  The first one, I thought it was going to fix me - oh the naivety!  I also went into that one thinking it could not possibly get any worse.  Nope.  Also, I was actually excited for my surgery in KY (seriously) - for all those reasons.  That wasn't totally naive.  And technically, it did work.  It just just that there was a whole lot more wrong than I knew at the time.


This time, I was not excited.  When the surgeon asked me how I was feeling prior to my surgery, I told him - and the anaesthetist and the anaesthetist's assistant, and the pre-op nurse - all of whom were wonderful - "to be honest, I'm a bit nervous about this one." Nobody knew what the outcome would be. But having everyone, including the anaesthetist and my surgeon taking time before the surgery to come and just chat for 5 minutes, to introduce themselves, explain what they'd be doing, ask if I had any concerns - I was not nervous about the level of care I would receive in any way at all.  Simple gestures, several minutes of their time.  Reassurance.  Kindness.  It's amazing the difference it makes and it was so very much appreciated.

I also, however, did not for one moment expect to wake up in excruciating pain!  This was those three wee incisions - not the open back, drilling-through-bone surgery I had in KY!  I hadn't even contemplated waking up in so much pain.  My first conscious thought was: this feels just like the last time - like I had been cut open, cut up, and sewn back together..... which technically did happen, I suppose.  They asked me to rate my pain on a scale of one to ten.  I've explained often enough on here why I hate that scale and really struggle with it.  Apparently my drugged-up, semi-anaesthetised self has the same existential problems as my undrugged brain.

"Just give me a number," the nurse said, "is it 5? 10? 50? 250........?" (At this point all I wanted was a sip of water. One sip. One ice chip.  Anything. I kept slipping in and out of consciousness but my mouth was SO dry from an anti-nausea patch - like talc had been squirted in my mouth. I kept pointing at the patch on my neck, trying to explain; my mouth was too try to say more than a few words.)  So I picked a number.  "250." I sobbed.  She said it first - and it  did hurt!   A LOT.  I asked again for water or ice, between sobs.  No water until I was conscious.  They gave me IV demerol........ sleep, wake, repeat........... they gave me IV fentanyl............. sleep, wake, repeat............ they gave me IV ketamine......  I kept falling asleep - probably only minutes were passing, it felt like forever and in between I kept trying to ask for ice, or water, and pointing at my neck.


Eventually I managed to open my eyes for long enough to be deemed conscious (imagine a kid pretending they have frog eyes - because this is what I was imagining as I tried to keep my eyes open.  I'm pretty sure this is what I was doing.).  I got ice.  I managed to talk properly.  The f&^%$#g scopolamine patch had fallen off my neck at some point.  I must have looked like a proper numpty just pointing at my neck (on the good side), not really saying anything! Although I wouldn't have choked on a SIP of water. With this figured out, they got me another patch.  And more ice chips.  And my parents.  It's funny, people worry so much about you (/someone) go in for surgery, and then they laugh at me (/someone) so much when I'm (/someone's) all doped up and waking up.  There must be some sort of relief-release thing going on there.

The nurse told me I hurt so much because I didn't have any local anaesthetic before the wounds were closed - I will stop claiming the lidocaine-catheter-into-the-wound 48-hour-pump-thing in KY did nothing.  I believe them now.  It was doing something!  

Where was it now?! Ouch!

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

The horrendous pain was bad for a few days, but ultimately it was nothing like KY. (Thank goodness!)  'We' -  my doctors spoke to each other, and to me, addressing my concerns - made sure that I really did have adequate pain relief (in tablet form).  At the time of my surgery in KY, nobody knew the extent of my nerve damage.  Keeping my pain under control with very strong doses of drugs should (hopefully) stop my nervous system going into overdrive. It wasn't quite 'normal' pre-surgery, but there has been a big improvement in the past 6+ months - surgery had the potential to set that off again and we are trying to take every precaution to avoid that.  So far............ fingers crossed.


At my follow-up appointment, Dr G told me he expected my surgical pain to take around 4-6 weeks to ease.  That was quite a relief (more for my mum I think) to know severe pain is still expected at this stage.  I do feel it is way better than after the last one; but I am very, very aware of how much the medication is helping with that - and very grateful to have something that is working.  Really working - I have just discovered that painkillers are actually meant to do that - kill pain.  Not take it down a notch or two; but really push it down; make it nearly disappear.  Dr G said maybe not take it away entirely, but maybe get it down to a '1' - if I had anything that could even get my pain consistently down to a '5' I would be delighted.   I have never had that before - the kind of pain relief I had after this surgery. I can't believe I genuinely didn't know that.  (I am now looking for a pain doctor.)  And right now, all the sleep is awesome!  Not ideal, or desirable, as a long-term solution, but definitely helpful at the moment.  They say you heal when you sleep...... and I have a lot of healing to do, and rather a lot of sleep to catch up on too!

I've used this before, but I love it.
Also, this fact is hereditary - it is passed down on the maternal side ;-)

Dr G explained that he cut away about 2 to 3 inches of scarred down glenohumeral ligament "deep" in my shoulder.  To be honest, I need to read a bit more to really understand it, but basically the scarred down ligaments have been preventing my arm from being able to reach above my head (or be pushed, pulled, stretched, forced - pick the torture).  Under anaesthetic, my left (good) side movements were measured and then my right side compared to it.  Apparently it's quite unusual (surprise surprise) to have close to normal internal/ external rotation (& some other specifics) and just not be able to do one movement.  My physios (and I have too!) have spent a lot of time working manually which has brought improvement - at one point a physical therapist in KY told me I had "the worst external rotation [she'd] ever seen".  Why some of the manual therapy worked, but not the overhead, I don't know.

From: http://en.wikipedia.org/wiki/Glenohumeral_ligaments
Marked: CAPSULAR LIGAMENT

Honestly, my guess would be I damaged that area initially - it fits with my initial pain location (pain in that area has been a constant), and my mechanism of injury, the way I fell etc.  The other stuff got stiffer as time passed.  But who knows, really.  Now, the big question is whether the surgical release of this tissue will be enough to enable manual therapy, with passive movement, to make enough of a difference; or if there is a chance I have more scarring in other areas of my side/ribs/ lateral scapula area that may need to be looked at somehow.  Only time will tell.


All in all, Dr G has done exactly what he said he could do, and he has done it - so far, it seems - in a way that feels positive, helpful, and totally worth the surgery.  I am just keeping my fingers crossed that the healing continues and I survive the required physical therapy.  At my appointment he did say that one of the difficult things is being asked to do therapy; to keep it moving; to prevent it scarring again - all while there is pain and healing going on.  That's nothing new, it really feels like I've been doing that since June 2011......... I can't believe it's been so long.  My body is agreeing with this being a major challenge though.  It completely freaked out at physio on Monday (the 'stick' and I really do not get on - it has never liked me; nor I it); we opted for a more gentle session on Wednesday to calm things down; then Friday we went looking for that elusive 'line' everyone talks about,the one I've been searching for for close to three years.  It seemed better today, but it was really a trick. My body is fickle!!  It just waited a few hours, I had a nap after I got home (ok, I fell asleep right in the middle of a skype call to my sister.... sorry Jill!) and then later,  my muscles freaked out again, and spasmed, causing drenching sweats as a kaleidoscope of butterflies* fluttered inside me, little fasciculations fluttering within my muscles - an old familiar feeling, unfortunately. Excellent. The line continues to elude me.


*I was going to say a swarm of bees buzzed inside me, but I use the butterfly analogy more - it's more accurate; so I Googled a collection of butterflies and learned the correct term is a kaleidoscope of butterflies - how cool! I am going to use that any chance I get.  And I don't imagine there will be that many opportunities, so there it is. I think the colours should be compulsory too!

Live Colorfully! (Love Kate Spade - I could do this resolution!)

Back to Hogmanay (as New Year's Eve is known in Scotland - and it's such a big party that both January 1st and 2nd are public holidays!) and my post-surgery evening..........

I did manage to get upstairs (with help) and into bed (ditto) - after KY I couldn't climb stairs for 2 weeks, nor could I lie flat.  This time I didn't need to have my arm immobilised, although I have a sling for when I really need it - especially in busy places, it serves as a warning sign as much as a support (maybe I'll get some fabric paint..... make it colourful!)  So although I was sore, objectively I did know it wasn't as bad right from the beginning.  Although I was totally out of it from the "entire pharmacy" of IV meds the nurse told me I'd had (her words).


Mum came upstairs regularly, to check on me - I was mostly sleeping.  At one point she asked me if I thought I'd be awake at midnight (for the new year - one I won't forget!) and did I want her and Dad to come upstairs 'for the bells' (another Scottish reference) rather than leave me alone.  I looked right at her, eyes open, and said, "have you still not finished putting together all of these prizes for this thing for Jill & Fraser?" (my sister & brother-in-law - who were back home in Scotland).  The look on my Mum's face was priceless.  I really don't think I've seen her speechless before!  Despite being - clearly - not quite with it, I did manage to respond first,"oh, I must have still been dreaming."  (Absolutely no recollection of my dream) - to be honest, I think it's actually funnier to me because I remember it....... this complete expression of pure confusion on her face.  I also remember her coming in some other time, asking me what I was watching - my laptop was open -  "I'm watching my screensaver." (In my defence, my screensaver is mainly photos and quotes saved from Pinterest - sometimes I just let it play like my personal little inspirational slideshow while I'm doing other stuff anyway, although I'm not usually 'watching' it.)  She thought it was hilarious.

For entertainment value, I did amuse them :-)

They got me these:

I really don't know where I'd be without them.

"Life is what happens to you while 

you're busy making other plans." 

     ~   John Lennon  ~

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