Wednesday, 6 April 2011

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:


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...