And January is gone...

The day after I wrote my last post, I had my first post-surgery appointment with my physio who specialises in strange scapular issues that nobody knows how to treat, patients nobody knows what to do with.  My surgeon in Kentucky recommended him 6 months after my first surgery and he has been an invaluable resource of information and knowledge for me, and also for my regular physio, as well as a caring professional whose kind and unassuming manner belies the accolades and achievements he holds (I stumbled across his CV online when I was looking for details to send to someone - it's pretty impressive).  He is always honest; I always feel he tells me what he knows and what he thinks; and since I like to know things, and understanding as much as I can about all things shoulder/injury-related is a huge part of how I have coped with this, I appreciate being treated that way.  


In saying all that, my appointment last week was tough!  In every way.  The upshot is that February has to be a month of pushing through.  All the stuff I wrote about gymnastics is going to have to come to the surface again (after 3 years of trying to learn to push it down; to listen to my body; and to understand pain is a way of your body communicating - that's on hold).  I need to get a 30 degree increase of active motion with my arm this month, or there is a good chance my surgery could be classed as a failure; my tissue might not stretch out; I might run the risk of things scarring down again.


That was a hard thing to hear.  Not as hard as the new assisted movements I have to do though.... 


Example - an arm held straight up in the air is 180 degrees; I'm currently aiming to get to about 160 degrees.  At the moment it is taking a lot of 'effort' (i.e. pushing, pulling, leaning) from my physios to get it there, (and possibly a little more effort from me not to wriggle out their grasp and run away) -  attempting it myself at the moment is just pathetic - I have no idea what the number is, I'll just stick with "not even close" and "pathetic"........ and  agony.

And I will now admit that I think I have lost all the stuff I wrote about only a few days ago. Or maybe, the language of gymnastics is just not the same as the language of... 'controlled torture' I think I'll call it. I guess I was never really tortured in the gym - hard work, pushing yourself to your max and working on something over and over and over again while fighting through sore, tired muscles isn't really the same as forcing yourself to lie/ sit still while someone forces your arm into a position where it feels like it will snap if it goes any further - "like rocks crashing into each other..... and you could just crush them"  I described - "that's ok, I'd expect that" he said and pushed a bit harder.  But we weren't finished there.  Once in that absolute maximum position, feeling (honestly) as if he could just snap, crack(le) and pop my bones, he said: "Now reach up. Higher. Harder. Push against me. Resist this. Push down. Push up. Resist. Push with your elbow. Push with your wrist.  Push out the way. Push up again. Don't let me move it."   


Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest. Repeat. Rest.........

$%#&.

The idea (/ necessity) is to get my muscles working again.  Muscles that haven't been able to work properly for 43 months now.  The have to 'relearn' how to fire and how to work properly - and of course they are....... well, weak does't even describe it.  Useless is better.  Sometimes my arm still feels like a stick, hanging at the side of my body, but not properly connected.  It's an odd kind of sensation.  The point of working through the pain, to get the muscles to work goes with the theory that once the muscles work and are actually supporting my arm and balancing movements (i.e. multiple muscles are sharing the workload rather than just one or two muscles trying to compensate different movements), the pain *should* diminish. That's the plan, anyway.....

(It better be!)

And there's also self-inflicted torture - twice daily with my 'pulleys' that are fixed over my closet door, staring at me like an entirely innocuous nemesis. (Give me "sit in the splits while you watch TV" any day!) I can already say - 3 days in, I have not missed an exercise.  I may cry through it, I may feel - again literally, I could draw the lines on my body - the bands of tissue that are pulling on my ribs, and on my scapula and feel like I could pull them right out of position, or until they snap.  But I will never have anyone say to me: it didn't work because you didn't try hard enough; or: it didn't work because you couldn't fight through the pain.  I will never hear someone else say that, and I will never have a voice in my head saying that either.  Because so far, despite all the 'experiments' and failures and different exercises and different exercise programmes; I have done every single thing I have been told to do (this makes me a "compliant patient"), and I'm not going to stop now - something has to work.

Obviously, what I hope for, is to be told the surgery did work; it can be classed as a success.  That removing that scar tissue, and unsticking my humerus from my scapula (i.e. cutting away the scar tissue that was sticking the top of my upper arm bone to my shoulder blade  -  exactly what was happening) has made a difference.  The degree of difference remains to be seen; what pain, possible problems or other issues remain are still major unknowns; but right now, at this moment in time, the focus is on making sure this surgery has not been for nothing; that it will be helpful in some way.  That is what I am working towards, and that is why I will bite my gums or dig my nails into my skin until I bleed; I will grit my teeth, and I will ignore the watery eyes (it really bugs that closing your eyes does not stop tears); it is why I have already told my parents, my physio and his current interns that my eyes will water this month and they will just have to ignore that. And I will just have to ignore it all too.

So.......... February is set to be a tough month. I will need all the mental and physical energy I can muster, and hopefully I will work hard and see some progress.


 In order to have something else to focus on each day, even for 5 minutes, I'm going to try to make February a 'visual' month - just a picture, photo or image of some sort to sum up my day.  If I manage, it might be interesting to look back over it and see if it tells me a story.  Getting things 'out there' can be pretty cathartic, so hopefully with something else to think about, and to reflect on will be helpful. If not, I'll sleep and try again in March!

Looking ahead, this is how I feel:

Definitely 'fingers crossed' kind of a feeling

Success is going from failure to failure without losing enthusiasm

 ~ Winston Churchill ~

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  ~

A week of good wishes for YOU

We're one week into 2015 and my blogging intentions have not exactly been realised (i.e. I've failed miserably - but I'm aiming for positive, so the first way sounds better!). 

So here is a week's worth of happy, positive, and inspirational words; wishes for 2015, and for life.

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

“This world is but a canvas 

to our imaginations.”

  ~ Henry David Thoreau ~

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

"Life isn't about finding yourself. 

Life is about creating yourself." 

   ~ George Bernard Shaw ~

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

“The time you enjoy wasting 

is not wasted time.”

~ Bertrand Russell ~

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

“Learn from yesterday, 

live for today,

hope for tomorrow."

   ~ Albert Einstein ~

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

“Do not lose hold of your 

dreams or aspirations.   

For if you do, you may still exist 

but you have  ceased to live.”

   ~ Henry David Thoreau ~

Let your art blossom   © Gail Munro

And the day came when the risk to remain 

tight in a bud was more painful 

than the risk it took to blossom.

~ Anais Nin

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

And throughout the YEAR!