Wednesday, February 27, 2013


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

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

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

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

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

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

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

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

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


  1. Hi. I stumbled across your blog while searching for more answers in my own post-op recovery. I can't believe I found someone with almost the exact, incredibly rare operation. I suffered a complete rhomboid major and minor dettachment back in 2010; it wasn't properly diagnosed for almost a year and a half. My surgery was performed in Aug. 2011 by Dr. Rubin, in southern California (to my knowledge, the only other surgeon who specializes at this.) I read some of your entries and you def hit everything on the spot: incredibly difficult recovery... At a snail's pace. It truly feels like I go through periods of taking steps back, rather than forward. I hope you have a tremendous support system around you... Some people just don't realize how difficult and wearing this recovery is. After a year and some months, I, too, thought I'd be further along.

  2. Hi!Thanks for your comment - like you say, it's pretty amazing to hear from someone else who has had the same thing since it's SO unusual! I actually wasn't aware there was a second surgeon also doing the op, but I think I recognise the name from some research I read. How are you progressing now? I'd be really interested in hearing your 'story' too - I think you can email me from my profile here (?) or please feel free to share here too if you'd like others to see.

    I've connected with one other person who had Dr Kibler's surgery and it's been really helpful to be able to discuss that with someone else with the same experience.

    I hope you are doing well just now, and despite the snail's pace, you're experiencing good improvement.