Wednesday, February 29, 2012


My surgery yesterday went well.  Dr K found pretty much what he expected and was able to reattach the lower trapezius and the rhomboids to the scapula.  He said my trapezius was detached and "flapping" and my rhomboids were partially detached but in multiple areas.  He thinks the worst of my pain was probably coming from the fact that the rhomboids were still attached in some areas and were pulling.

The last 24 hours have not been good.  I am in a lot of pain, the drugs really don't feel like they are helping enough!  Today my Mum called the surgery centre just to check my level of pain was normal.  They said this procedure is very painful, Dr K did "quite a bit of work" inside me, and the 48 hours following the surgery are very tough....... so there is nothing else to do but tough it out.  I really do feel like someone has cut up my muscles and bone and pulled them all back together again.

The whole process yesterday was very smooth and I was very lucky to have fantastic nurses and doctors dealing with everything.  Everyone was so nice.  I had a very short period of time when I felt very nervous after the nurse put the IV in my hand (it was sore) and it all became very real.  However pretty soon after that they gave me an IV pre-op drug that worked very quickly and made me laugh hysterically!  They kept asking me questions to make sure I was ok but I couldn't make the words come out my mouth because of the drugs so I just kept laughing.  When I eventually managed to say my name they then asked me what procedure I was having and I had to say "scapular muscle reattachment" which was impossible and made me laugh even more!!

Then they took me through to the OR, chatted while the anaesthetist gave me gas and the next thing I remember is waking up in recovery with the hiccups which kind of went "hic.... ouch... hic.... ouch.....hic.....ouch..."  The procedure itself took about an hour then I was in recovery for about two and a half hours and then back to the hotel.  I have a lidocaine pump-thing that goes into my wound to numb it (it really doesn't feel numb but apparently it would be even sorer without it), various painkillers, an anti-nausea patch, and a cold therapy pack that pumps icy water through a pack that fits on to my shoulder.

In recovery the nurse told me this is one of the most painful procedures they do and she has seen grown men cry because of it. It has made me cry with pain but it should ease after 48 hours... and I am just over half way there at the moment.

So it's a really tough couple of days and then it is going to be a tough month with my arm immobilized and then hard work doing the physiotherapy but it will all be worth it.  And when I asked Dr K if he thought I'd ever do a handstand again he said he has a couple of patients who are now doing weights so there is a possibility I will be able to handstand again one day.  Great news!!

Monday, February 27, 2012

Surgery tomorrow....

Today I had my appointment with the surgeon.  Up until now he has consulted with my other doctors but I have not actually spoken to him.  The appointment was really good.  He took time to go over everything with me, confirm the diagnosis, explain the surgery, the injury and other outcomes he has had.  I think I feel about as good as I can feel going into surgery tomorrow.

Dr K knew exactly where my pain was, how to describe it, what movements hurt it and what I can/ can't do with it - it was such a breath of fresh air to have a doctor who totally knows what's going on (unfortunately I've had that same feeling before!).  He thinks my rhomboids and lower trapezius muscles need to be reattached.  This is done by drilling pairs of holes in the scapula and sewing the muscles back to the bone through the holes.  I then have to be immobilized for a month to allow it to heal.

He said patients with this problem can be some of the most disabled he sees.  He said the pain levels just get overwhelming and the lack of function is difficult to handle.  He made a comment about being tough and I said I used to think I was tough before I had this but he said I am tough, because it has been tough to get to here.  That really made me feel so much better - I had a doctor in Edinburgh tell me that I was "overly focussed" on the pain and that I should just "learn to live with it" - terrible advice from a doctor.  Today I was told I wan't the first person with that kind of story... Today I was tough!

 Is it really acceptable that there are doctors out there that we have to trust with our lives, and they continue to behave in such a manner? Just now I am lucky enough to see a fantastic doctor and I am quite happy about putting my life in his hands in his OR tomorrow; but I find it sad that there are other doctors who do not uphold the same care, compassion, and professional standards....

It seems you just have to get lucky........ and do we really want excellent healthcare treatment by good dotors to boil down to luck?

As for me right now, the pain in the area of the detachment should improve very quickly but it is difficult to know how the other pain will be affected right now.  A lot of my pain comes from the fact my scapula is not in the right place - the muscles are not holding it in place so other muscles are having to work harder and being pulled tighter and they are shortening through my inability to use them.  In addition it is possible there is another tear in another muscle (latissimus dorsi) which will hopefully heal when it is not being pulled into the "wrong" place.

So there is still a lot that will become apparent tomorrow and then over time as things heal but surgery is the first step on the road to recovery and I am actually feeling excited that it is going to be repaired.  I may feel more nervous than excited tomorrow when I wake up though. And that might not be helped by no food or water ... or PAINKILLERS! for 10 and a half hours, or longer. Ugh!

Quote of the day... one of my favourites and very apt!

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

Sunday, February 26, 2012

We're in Kentucky!

Just a quick update.... Our drive yesterday was long but uneventful.  Door-to-door in 12 hours, through Pennsylvania, Maryland, Virginia, West Virginia and Kentucky! I managed to time my tablets quite well and slept for a good part of the trip... so my sleepiness combined with my backseat full of pillows meant the car journey wasn't too bad:

This afternoon we are going to have a look around Lexington and see what there is to see...

Saturday, February 25, 2012

Off to Kentucky....

Tomorrow we are leaving to drive the 600 miles to Lexington, Kentucky for my shoulder surgery. I see Dr Kibler on the monday morning, I have the surgery on the Tuesday - it's a day procedure, so all being well, they send me (and my pain pump) back to the hotel for a couple of day, then I see him again on Thursday morning and if everything is ok he will clear me to travel back here on the Thursday.  It all seems very simple....!

I'm not really sure how I am feeling.  Part of me is just so relieved and excited that I'm going to finally get my shoulder fixed.  The pain I have at the moment is unbearable - not exaggerating or being dramatic, it is just simply unbearable.  I am now taking Percocet plus a muscle relaxant to address the pain and it is giving me a bit of relief from it for a couple of hours at a time.  It doesn't take the pain away, but it does stop me crying with pain and allows me to have a shower or a couple of hours out. So even although I do feel a bit nervous, I just keep telling myself it can't be any worse than what I have right now, and in the long run it is going to fix it, so it's totally worth it.

I have perhaps read too much information in surgical text books though! I know exactly what they are going to do to me - drill holes in my scapula so they can "lace up" the muscle to reattach it to the bone.  When I first read this it was very cool, totally fascinating.  Now that it's not a hypothetical body in a surgical textbook - but my own body! - it makes me feel a little bit queasy!!  But the surgeon I am going to see has an international reputation and he is at the top of his field.  He created the procedure - that is why I am going to Kentucky, he is the only one who can fix me.

As long as the procedure is straighforward, it will be done on the Tuesday and shouldn't take very long.  It is the recovery that is going to be the hard part.  The information I have says 4-6 months for full recovery.  The first month my arm will be completely immobilized in a sling and a brace.  I am not supposed to move it at all. I have no idea how I will get washed or dressed.... or what clothes I will even be able to get on.  After 4 weeks of immobilization I start physio.  This is also very limited at first.  The first 8 weeks at physio have very strict guidelines.  After that I can begin strengthening it again. I think once I get to the physio I know I will be helping myself and I also know that is where the really hard work will start.  I think being immobilized for a month is going to drive me crazy.  BUT it will all be worth it to have the use of my shoulder and my arm back, and to be rid of the horrendous pain that comes with the scapula sitting in the wrong place.

I am also curious about my exact diagnosis as I will get the results of the CT scan with 3D reconstruction this week.  I've also been told it's likely the full extent of the injury won't be clear until the surgeon actually opens me up and has a look.  At the moment they have said "one or more shoulder muscles is detached" so finding out exactly what damage I did will be interesting.

So we are off early in the morning for a (kind of) adventurous week.  Hoping everything goes to plan and I come back with a fully functional shoulder!!

Friday, February 3, 2012

My New Year (February) Resolution.....

I will write more! I started this blog as my final journey "out of the lyme light".  I guess it is a lesson to everyone, and especially to me, that perhaps that is never as simple and straightforward as we think it's going to be.  Why should it be really?  The whole course of treatment - never mind the illness - has been two steps forward and one step back, so the final uphill battle is not going to be any easier!

I didn't, of course, expect to break my shoulder and have to add that in to the mix.  That is life reminding me (as if I really needed reminding) that shit happens. So, while I am still battling those most stubborn little spirochete buggers, I am left doing it one armed!

In all seriousness, this has complicated things.  I am more tired again. Pain is exhausting. I am back to relying on other people to do things for me and that is so frustrating in so many ways. Although it is because of a different injury, it is so difficult not to associate it with going backwards health-wise, in general.

 Stopping my antibiotics was planned for December and Dr S said we should go ahead as planned... see how it goes.  So I did.  It took about three weeks for the symptoms to creep back up on me - an improvement from the last time I tried to stop them when the Lyme symptoms hit me full force in about two days!  But after the giant hands returned to squeeze my brain inside my skull and I slept 17 hours one day, it seemed pretty obvious that now was not the time to stop them - I was not doing very well.  The day I realised I was going to have to go back on the antibiotics, for an indefinite period of time, I cried.  Mainly because it has now been seven years of being ill and I was really hoping I would be able to stop them and move on...... symbolically.  But after thinking about it, this is fine by me. Really. When I look back over those seven years I was SO very ill and I have made such huge improvements.    And if I have to take an antibiotic once a day it's really not the end of the world.  I'd much rather get the benefits from that than suffer the alternative.

Anyway, I plan to stick to my new year's resolution.  I have lots to write about - my shoulder injury, possible surgery in Kentucky USA; my Lyme doctor in the UK being called up before the GMC and no longer running his clinic (I only found out about this last week, I am shocked and saddened that Lyme in the UK is following the exact same path that Lyme in the US has done, several years later); various recent Lyme-related articles in UK mainstream media - the information isn't exactly great, but at least the word is beginning to get out there. So.... lots going on this year and hopefully lots going on in Lyme-world in the UK this year that will really help bring Lyme the attention it needs to that sufferers get the treatment and support they desperately require.

So.... a favourite quotation for a new year:

“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.”
            ~ Albert Einstein