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Supporting people affected by Charcot-Marie-Tooth disease.


At some point, you might have to have operations – either lengthening tendons or fusing joints, which can be very helpful – especially the tendon stuff.  It’s possible to transfer good transfers to one side of the foot to the other, making them take over from the weaker muscles.


Our top survival tips!

Single operation or ongoing? Consider an adult hospital if you’ll have to keep going back as it helps reduce anxiety if you already know the hospitals routine, staff members etc.

Ask if you can stay in the teenage ward? Away from screaming babies and smelly old people (who usually snore or talk to themselves incessantly!)

Pain – having operations hurts, there’s no getting away from it, but there are lots of things they can do to make you more comfortable.  If you have both feet done at once (which is sometimes better), an epidural can completely take away the pain.  An epidural is a needle into your spinal column (don’t worry, they’ll put it in whilst you’re asleep) and will numb your legs – the downside is you won’t be able to get out of bed, and will have to have a catheter for going to the loo, as you won’t feel when you want to go.  Sounds horrible, but it does work, and it would only be for a day or maybe even less.  Other options are automated painkiller pumps, known as PCA (patient controlled analgesia is the technical term), where you can push a button when you need to, and it delivers a small dose of morphine.  There is always downside – it makes you feel totally spaced out and sleepy.  Otherwise, normal tablet painkillers (or liquid ones if you can’t swallow tablets) do work well.page 58

If you have to be in plaster – get a funky colour to cheer you up!

Recovery time – Get physio and exercise started ASAP after having cast off to re-build muscle you have lost. The first few weeks will hurt but persevere – the more you do on the new foot, the quicker it will stop hurting and start to feel “normal” again.

Before hospital – swim, cycle, row and run! You will lose huge amounts of muscle if you are in plaster for months on end so you best start with as much as possible! Push yourself as hard as possible by thinking – you’ll get a three month rest after that last bike ride!

School – whether you can go to school after the operation very much depends on your school, if it’s got lots of steps, you might not be able to go.  Make sure the school knows well in advance, and they will no doubt arrange work for you to do at home.  If the surgery is likely to be near your GCSE’s, then you can delay it until afterwards.  It’s probably best not to take time off too close to your exams, as you’ll miss too much.  Speak to your surgeon and he may be able to organise the surgery for the summer holidays, so you don’t miss too much school.  And if your school is wheelchair accessible – go back to school!  It’ll keep your mind of the pain, keep you with the friends, and give you something to do.



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