CMT'ers Advice on Triple ankle/ foot bone fusion (triple arthrodesis) surgery needed please? Any help appreciated :)

[3gorgeouskids]

Hello, I joined recently in the hope of finding some advice or just reviews even on CMT'ers who have had ankle bone fusions of any kind. Im 31 and diagnosed CMT type 2 at 16ish years old. Many of us in the family have it so i've grown up very ...

[John1945]

Hello, to 3gorgeouskids .....

Here in Scotland, we would always say, please "be very canny" (very careful)!

Do not rush into any orthopaedic 'bone-fusion' procedure, called 'arthrodesis', because even if your high arches, called (pes-cavus) are successfully, and surgically reduced, always remember that your existing / remaining muscle strength and tone will STILL very slowly continue to be weakend due to your ongoing muscular atrophy, and your remaining lower leg/limbs muscles, will most cetainly continue to 'waste-away', during your remaining lifespan ? ? ?

Remember that any orthopaedic surgery procedure is a "trade-off", whilst you may GAIN something however, you may also LOSE something !

Thankfully through the great efforts of Cmt United Kingdom (Bournemouth), most medical health professionals, are now more aware of Cmt, than in recent years: Most Orthopaedic Surgeons will now usually only operate, if it is the last resort:

Research all your medical options, and then ask your orthopaedic consultant,

1) "What is my likely post-operative prognosis" ? (a forecast of the probable 'long-term' course, and outcome of your orthopaedic procedure) ?

2) "What are my (if-any), alternative medical options" ?

Best of luck to you.....

John..... (Glasgow)

Tip!

Make a list of questions, that you wish to ask, during your consultation:

[TB5598 in reply to John1945]

Hi John1945 and welcome to 3gorgeouskids.

just to let you know that I had gone through the following at the start of Feb 14, TCI for left cavovarus - Gastroc lengthening, peroneus longus to brevis transfer - os calcis valgising osteotomy and first metatarsal dorsiflexion osteotomy. But John is right always look at both side of any surgery. I had to go through it as anything below my knee was being compromised and being a diabetic, there was more to lose if id ignore it. But anything that you wish to ask...well you know where I am.

[VickiT]

Don't do it. I deeply regret this surgery. Has affected every area of my life. Outstanding doctor and perfect procedure , but life altering for me. This must be a LAST resort.

[3gorgeouskids in reply to VickiT]

Hiya VickiT. Thank you for replying. Can I ask what happened for you to say that? Did anything g go wrong?

[sky456]

I have had the right foot done , my heel Brock n tendons moved, I'm walking better and have less pain , but everyone is different , but for me it's been a good desion .

[3gorgeouskids in reply to sky456]

Thank you for your reply @sky456 ..I hope so

[3gorgeouskids]

Thank you everyone. Im booked in for surgery tomorrow morning Sunday 27th July 2015. My neurologist, 3 orthopaedic surgeons, GP and Surgical appliance clinic all tell me I really need it now. Its been really difficult for me to walk on my foor/ankle. Its getting extremly painful and although I know my cmt will always be there getting progressively worse, my ankle, medically is much more of a problem and getting in the way of getting decent orthotics to support my feet with my CMT. Once straightened, I can comfortably wear my foot orthotics etc. Well.... here it goes!! I will find out after tomorrow and 3 months worth of plaster cast/ aircast boot and then physio!! :/