4 Years P.O.

Just had a brief appointment with the lovely Mr Cooke who, very upsettingly but probably very deservedly, is retiring soon and he said people have found this very helpful so I thought I would add some more final notes and (potentially) some pictures (when I can locate a camera). Before I start I would like to say that Mr Cooke and Mr Rogers and all the staff at the NOC in Oxford were absolutely amazing, they're such knowledgeable people with this disease and the care you get is just excellent.

I would have to say if you are thinking about doing this and hesitating in any way I would say go for it. It is 1 week of quite a lot of pain, 2 weeks of minor pain and inconvenience and 6 weeks of pain-in-the-proverbial plaster but overall it's definitely worth it. The issues CMT feet people have obviously don't go away, my reflexes are still poor and so I do still mostly watch the pavement when I walk, rather than the surroundings, but otherwise I LOVE my new feet. Interestingly, I was most upset when all the exciting stitch marks which made me look like I had odd tattoos or fancy dress socks faded. I felt they made me really look like I had earned my new feet! 

The main issues the surgery has improved are ones I didn't even notice I had. When doing long walks or workouts that involved squats I found I had pain running down the outside of my legs (peroneus longus I suspect but don't quote me), this has all but vanished. My feet feel, for want of a better word, more 'centred' on my legs. I do occasionally go over on my ankles but I suspect everyone does when they have the odd glass of wine and doesn't pay attention to the cobbles but I don't feel so much like they're always a moment away from collapsing outwards. My new trainers which I purchased with some trepidation 8 months ago (my post-surgery ones were actually falling apart) I spent a week waiting for the blisters that never came because now my big toe isn't raised so it doesn't rub - amazing!

I have never been particularly self conscious, I think someone who puts surgical pictures of their feet on the internet is unlikely to be, but I now feel that if I meet people in my socks they may not even know I have 'funny feet' as everyone seems to like to call them. So while I have lost a nice conversational ice breaker I have gained, what I consider to be, really cool new feet.

1 year P.O.: New Shoe Joy

So I realized recently I had failed to post my 1 year update, which I think was officially about 2 weeks ago. I am doing absolutely great and frequently forget I've had surgery. I honestly cannot recommend this procedure enough to anyone who has CMT and has had problems with walking/shoes/balance etc. 

While my problems were never huge, when I had two mismatched feet half way through my surgical journey I had a  great basis for comparison. I suddenly realized that having my heel centralized made the outer tendons in my legs ache MUCH less when walking on slopes. I realized that now my weight was born evenly down the axis of my leg doing exercises like squats were so much easier. And I found that when I tried longer strides to stretch my leg it stretched my calf evenly down the back, rather than only down one side.

On a more childish and selfish note I've found I LOVE wiggling my toes and having them look like they're waving, which I've never been able to do before. I love wearing toe post sandals and not having them slip off my foot because they're held on at a wonky angle. Most of all I love wearing shoes that are a little snug and not having my toes rubbed to bleeding.

Yes I have had some problems, I had some aches and pains, I had some infections but all in all its been great. I'm going to put a thank you out there to Paul Cooke and especially Mark Rogers who have been amazing throughout this process, and to all the nurses at the Nuffield who were truly amazing. I'll sign off now and pop a video on of some waving toes as soon as I can find my camera!

Best wishes to anyone who wants to have this done and happy walking!

8 Months (& 3 days) P.O. Up and About...

Big toe...smart toe...pain in the ass toe...

Turns out the heel pain was entirely a one-day thing and is now but a memory. Toes are, as always, causing problems. Not both of them, to be fair, just the third one with the massive pin. Because of the position of this pin it stops me going through the phase of gait known as 'toe lift', which is where you lift your heel but keep your toes on the ground. In a normal foot this means the very bottom toe joint, where the toes meet the foot, is bent. As you can see from the picture bending with that pin in the way is painful/impossible! I am rapidly developing a roguish limp though and am looking forward to purchasing some kind of eye patch to go with it as soon as possible...

8 Months P.O. Screwfix Direct

I have been rather remiss about posting recently, mostly because there was nothing worth posting about but partly because I've been incredibly busy at work. However, today I am fresh out of day-surgery (well yesterday I was fresh out, today I actually feel fresh rather than doped up to my eyeballs) to remove my right heel screw and to repin my two problem toes. 

As procedures go it was considerably quicker and much less painful than the previous two metal work jobs, probably because I have come out with perhaps less, rather than more, metal work in me than before. According to the lovely Mr Rogers (getting that in there just in case Mr Cooke is reading this) I have a randomized trial of one for my two toes. The second toe (always less of a problem) has a Smart Toe Implant (pop it into google, its the first website that comes up) which is a very cool new piece of kit designed for fixing hammertoes. The third toe was, as always, a problem and despite trying for a fun new implant it was having none of it so has a traditional K-wire like before except without the unfortunate piece of cork sticking out the end of my foot. On top of these I have a large piece of padding absorbing blood quietly oozing from my heel where the BIG screw which was causing me problems, has come out.

Practically, this means that at the moment I am sat with my foot up in bed because it aches quite a lot. I had a number of different stories regarding recovery depending on who I spoke to. Mr Cooke at my appointment last December said 'in and out in a day, rest up for a day and then you'll be about your normal business'. Mr Rogers yesterday said 'rest up for 48 hours and weight bear as you're capable' and the day-surgery nurse Sharon said 'stay in bed for the rest of the week and only walk on it to go to the bathroom'. So at the moment I am torn. I feel I SHOULD be walking on it but have tried and it is extremely painful, mostly the heel-hole area so have decided to combine all three approaches and 1) stay in bed all of today and crawl around the house (no crutches) but put my foot on the floor and put some pressure on it while sitting down, 2) stay home for the rest of the week and work at my kitchen table and 3) perhaps try weight bearing tomorrow when I take the bandages off and change the dressings,

As for right now, I think some elevation, paracetamol and chocolate are required...will update you re walking asap.

6 Months P.O. Nothing to declare

So my toe issues continue. I managed to grab a part as an extra, contrary to my normal scientific life, and got out on a film set for the day. This allowed me my first venture into heels. Not comfortable heels but sad 1920s period heels. Actually felt relatively stable with the new tendon placement but the lack of toe bendyness hindered me somewhat. I have had a date through to fix said toe issues and to whip out the heel pin but it landed right in the middle of a week when I'm away for work (sod's law) so I shall have to rearrange. Its strictly a day job so I'm told will be no hassle so I shall update you as and when...

5 Months P.O. New Year New You blah blah blah...some notes on exercise

Its home truths time people. I am a person prone to expand. In order not to expand I must not overindulge in the chocolate department and do some regular exercise. A downside of this surgery is that not only can you not really exercise to your full capacity but that when you are in hospital/recovering people bring you chocolate. Not a great combo on the expansion front.

As of the beginning of the week I resolved to return to my pre-op weight (approximately a stone less than my current weight) so have set myself a somewhat rigorous exercise regime that started tonight with an hours worth of aerobics. As much as she may rub many people up the wrong way with her persistent perkiness I am a big fan of the Davina workout DVDs, I can embarrass myself in front of the TV with nobody watching and, possibly more importantly, all the exercises are explained so you don't do yourself (further) injury. There is also, handily, a low impact version of all the cardiac work. 

Being somewhat of a wimp, this being my first set of aerobics after this op, I voted to go with the low impact most of the way through. I finally plucked up the courage to do some higher impact at the end and can report no major problems. Ever so slight ache in both heels at the osteotomy site as well as a general loss of 'spring' when having to do things like bounce from one foot to the other but I expect these will recover in time.

Still stuck in the trainers for the time being but pin removal time I hope is imminent. I'll keep you updated...

4 Months P.O. - An Update and An Apology...

So I need to start by making many apologies. Firstly, if you've been reading and I haven't been posting, I am sorry, there was nothing exciting to report so I thought I'd keep quiet. My second apology is two-fold and comes as the result of my check-up appointment this morning. I was informed by a mildly upset Mr Cooke that I had constantly referred to the 'Lovely Mr Rogers' in my blogs and had not only mentioned him very little but also never referred to him as lovely. So I send my apologies out into the ether to the obviously adorable Mr Cooke but also to Mr Rogers who is now apparently called the 'Lovely Mr Rogers' by Mr Cooke.

This morning was supposed to be my last check up but I have been having issues with the head of the not inconsiderable screw (see photo below) in my right heel which is irritating me. I was informed, however, that it is a swift and relatively pain/issue free op to remove it so that's all booked in.

Other than that the new feet progress well. I am fully mobile and active, have not sadly done as much exercise as perhaps I would have liked but did a considerable amount of walking recently on a work related trip with no major issues. I also, joy of joys, tried on a pair of ballet pumps. Anyone who has met me will realize I was never meant to actually DO ballet but I enjoy the idea of a slip-on shoe that is flat but my previous issue with this design was that because my toes curled when I lifted my foot up they would simply cause my whole foot to slip out of the shoe at the front end. Not an ideal situation. HOWEVER, my new fun toes mean they don't curl when lifting so I can now wear said shoe-type with relative ease. Now the only trouble is finding a pair I actually like!

Side X-Ray, left foot. Nice screw to hold the heel together, pin on lower ankle to hold the re-positioned tibialis posterior in place, staple type thing to do something or other with the first metatarsal bone and pin in big toe better on the pic below...

Top X-Ray, left foot. Better view of staple in metatarsal bone as well as nice one of the big toe pin. Also, just visible are small pins holding the newly positioned toe tendons down at the very ends of each metatarsal