Here we go...

Morning all.  So today is the first day of my blog letting you in to all the ins and outs of having surgery to correct some of the foot problems caused by CMT.  I will attach some pictures of my foot as is as soon as I find the connector to my camera so you can see the before, during and after picture of what goes on.

Today I'm in for a whole load of tendon and heel shifting.  If you're interested, and don't mind fairly gruesome surgery pictures, checkout www.footsurgeryatlas.com and search for 1) Jones Procedure; 2) Tendon Transfer for Foot Drop and 3) Calcaneal Osteotomy - The Lateral Approach.  Having had a chat with the surgeons this morning the latter procedure has been recently modified so they can now do the whole thing through a really small incision which will be exciting.

So all I have to do now is sit around and wait for the next few hours until I get called up at which point I will add the updates that I suspect you're all here for...pain and pictures!

Just so we're up to date before we start though, here is what my foot currently looks like:

Date...

Sigh.  So despite the original 'we must do both within 6 weeks' line taken by all concerned the super-duper surgeons are not available AT THE SAME TIME until the end of July, so my next surgery will be the 28th unless they get a cancellation before (unlikely).  While I am now appreciating the fact that my left foot will be fully functional by the time my right one is done I'm not loving the whole mismatched feet thing...my current problem being that none of my old shoes really fit my new foot that well and I can't shop for new shoes until I find out if the second foot will be the same size!

To cure this I have resorted to purchasing an incredibly cheap pair of those sloppy ugg fakes that would fit ANYONE.  This may have been a mistake.  1) it's summer and 2) they're cheap.  Hot weather plus cheap furry boots equals lots of sweat.  I'm sure I don't have to draw you a picture, or even send you a smellogram.  I do, in fact, have one pair of Birkenstocks that vaguely fit my new foot, however, because of the curliness of my old toes its now sore to wear it on my old foot but not my new foot.  This is so complex.

Anyway, 5 weeks and counting...

Stitches out!

Yay - the stitches are finally out!  Took around an hour, the nurse and I didn't count them but feel in retrospect that we should have considering how long it took.  Definitely at least 5 per toe plus a good row on the heel and the first metatarsal and a few carelessly scattered ones around the ankle.

The whole thing was still very puffy so it didn't look that great but I was reassured once more by the nurse that this is perfectly normal, it has been only two weeks afterall.  However, it spurred me on into some cleaning action.  One of my first jobs when I got home was to go gently over the whole area with some cleansing wipes (the Simple ones from Boots) which took off some horrible coloured gunk!  I allowed the foot 10 minutes or so of breathing time during which I did my best to gently massage things to encourage the flow of stuff back up to where it should be.  I finally applied a layer of Bio-oil to those scars that looked the neatest and let it gets some air for around 20 minutes.   While I haven't managed to reach the heel yet that is my task for later in the evening.

Overall feeling a lot more comfy now all the plasters/extra bandaging has come off although not necessarily happier with the look of the thing!  Soon, I'm sure, it will look like a beautiful foot.  In the meantime its back to some weight bearing exercises...

First surgery

Surgery for the first foot went well so what I'm mainly interested in sharing with you guys is the recovery and the surgery for the second foot in the hopes that I've learnt from the first foot!

The op took place late on a Thursday and Friday was NOT a pleasant experience for me.  The pain was overwhelming because the timing of my nerve block and pain relief didn't overlap so my pain medication didn't kick in until after my nerve block wore off.  Not comfortable.  After dosing myself on PCA until I basically passed out I felt marginally better but the rest of Friday was pretty much a write off.

Saturday saw a visit from the physio who said if all we achieved was to stand up today then that was great.  Stand up?!  I am a healthy 27 year old, I'm sure I can do more than just stand up thank you very much.  Turns out I couldn't.  After being elevated for well over 36 hours AFTER being operated on my foot did not take well to being lowered over the edge of the bed.  Utter agony.  I managed to limp to the end of the bed on a zimmer frame and then back where I promptly collapsed into the pillows and napped for half an hour.  Exhausting.  The physio said she would return the next day.  I was not looking forward to her visit.

The whole experience spurred me into action.  I spent the rest of the day and the next morning lowering my leg out of bed at hourly intervals and lifting and lowering it from the knee.  An upshot of the out-of-bed exercise was the realization that my thigh wasn't used to the extra weight.  These simple exercises helped and by the next morning I was able to transport myself to the shower.  First shower in 3 days.  Bliss.

After this it was almost all uphill.  Monday morning I had a new cast fitted (3.5 days post-op) and got to see the foot.  I call it THE foot rather than my foot.  It looked like it belonged to Frankenstein.  I'm hoping with my posts from my second op I will be able to show you the horror.  Speaking to my consultant in the afternoon I was told this was totally normal and not to worry.  Home that afternoon and have spent the intervening week and a half getting achy from the crutches and learning to do laundry with my teeth.  Slight pain from the pins but apart from that nothing interesting to report.  Stitches out Friday.  Will let you know how it goes....

Basics for beginners

So for all those who are newbies to the CMT field here's a great site that explains the workings of the disease:

http://www.cmt.org.uk/What-is-cmt.php

I have CMT type 1A caused by a duplication within chromosome 17p11.  Conceptually that's not very interesting.  Physically it means I have all the standard signs of a CMT foot; pes cavus and hammer toes.  These signs have got worse as I have gotten older.  At 7 I was clumsy with relatively wide feet and special shoes (wide fit rather than 'special' - NHS shoes) but more recently my toes have become more hammer like and stiffer so I decided to have them sorted out.

Initial consultations settled on a heel shift (calcaneal osteotomy), tendon transfers/toe straightening (modified Jones procedure) as well as a posterior tibialis tendon transfer to pull my foot up and out rather than in and down.  Googling all of these shows you some lovely surgical images designed, possibly, to put you off.  Needless to say they failed to put me off...

Deciding to put it out there...

So after having surgery almost 2 weeks ago to correct a whole bunch of deformities caused by CMT I've decided to set up a blog about my progress and to chart the surgery on my second foot.  My main reasons for doing this are to allay the fears of others regarding this type of foot surgery and to help them, and maybe me, get through their rehab.  Here goes folks...