Ankle fusion

[stig51]

I am hoping to get some help and guidance from this post so any information no matter how small us greatly appreciated.

I was diagnosed with CMT at 37 and this was just by chance. For many years I just thought it was normal for me to keep falling over. My nickname was calamity Jane.

I went to the Drs over and over and all they kept saying is what do you want us to do!? Fortunately, I happened to go when there was a locum and as soon as I walked in he knew there was a problem.

Anyway, over the years I have done countless damage to my ankles especially my right one and have since been diagnosed with osteoarthritis. I have had cortisone injections but they haven't worked and the next step looks like it could be fusing my bone.

My mobility isn't great at the best of times so I am really unsure of what to do. Although I use a wheelchair I am not reliant but I am scared that if this doesn't work that is what could happen.

I would appreciate any thoughts you have on this or if you have had it done how has it worked for you? What was the rehab time and how long you were off work?

Anything you have to offer is greatly appreciated. Many thanks for reading my post.

[Ilsesmi]

Both my ankles and feet are fused and it is MUCH better. The orthotist put rockabottom soles on my shoes. I walk much easier and without pain. I was three months in a cask and then three months with a moonboot but for me it was worthwhile

[stig51 in reply to Ilsesmi]

Thank you for your help

[John1945]

Hello to Stig51,

I went private to consult one of Scotlands Orthopaedic surgeons:

After a CT scan it clearly showed the defects within my right ankle:

He then gave me my options ?

*Yes a total fusion (Arthrodesis) would stop my

pain, and my ankle would be totally rigid ?

* However, if your other (left ) ankle required fusion then,

you will be less mobile, and may require "wheeled-mobility" ?

His solution was ? A referral to a specialist NHS Orthotic

Technican Group, who took plastercast(s), and sent them

to Buchanan Orthotics (Glasgow): They in turn provided me with

lightweight (rigid) polyurethane "toe to knee" splints, c/w

extra padding at my heel, and ankle, a plus point is you get to pick

your colour:

Hey presto ! after a period of adjustment I was sorted: I can purchase

normal shoes, 1 size larger + extra wide version:

Best of health......

John (Glasgow)......

Ps......

Just make sure the "toebox" is high (deep) to accommodate !

[stig51 in reply to John1945]

Thank you. Unfortunately, I have had the orthotics but my ankles are so deformed now that they can no longer accommodate splints and I couldn't fit what they could make into shoes. I am very grateful for your reply though.

[John1945 in reply to stig51]

Hmmm!

Well, perhaps surgery is your only option ?

The skills of these surgeons today is truly 1st class:

My nephew had 4 procedures

# Tendon repositioning carried:

# Muscle(s) transfer:

# Bone Osteometry (making cuts as needed):

# Tendon lengthening:

All done, in a single (5 hour) operation, and was

discharged3 days later ?

PLEASE -PLEASE Always remember that depite any

orthopaedic procedure(s) a Cmt sufferer's lower limbs

muscles will STILL ALBEIT VERY-VERY SLOWLY continue

to "waste-away" (arthrodesis);

Good health......

John (Glasgow)......

[stig51 in reply to John1945]

Thank you so much. Take care

[Poodles]

Hi I wasn't aware I had cry till three years ago following nerve conduction tests for carpal tunnel. A neurologist soon diagnosed cmt. Prior to that I had mobility problems and what I now know symptoms attributable to undiagnosed cmt. An ankle fusion was performed in June 2004 and 5 seems later this all failed and a below knee amputation was the only solution offered! To say this changed my life for the worst is a huge underestimation. The symptoms we're all attributed to neuropathy and Charcots foot ensued. I would avoid at all costs an ankle fusion of i had my time again. Sorry for the negativity. Good luck.

[stig51]

I'm grateful for any feedback as this is one of the hardest decisions I may have to make. Thank you

[Ilsesmi in reply to stig51]

You’re definitely don’t need to amputate your leg. That is a bit rough and not necessary. I don’t need a wheelchair (sometimes I’ll need one if I have to walk far). After the ankle fusion I was free from pain and falling all over the place

[jean_rhodes]

Hi i was in the same position as you. I have cmt which affected my right ankle more than my left. After 2 ops to sort my right knee i eventually had a fusion on right ankle. I am nearly 58 and had the op 2 1/2 years ago, initially i thought what have i done?? The pain was bearable, although i did get an infectiob which caused a set back in my recovery, but now 2 1/2:years on, honestly the best decision in life. I am now much more mobile, the recovery is definty woth it. Before the op i was constsntly falling over, now i am able to walk much easier with my foot flat on the floot.

I hope this helps with you making your decision.

If i coukd i would go through it all again in my left foot.

Good luck..

[stig51 in reply to jean_rhodes]

Thank you. I really appreciate your time and comments. I have a lot to think about

[jean_rhodes in reply to stig51]

I know i was in the same position, but even with the infection, it was still the best decision iv made.. everybody i meet cant beleive the improvement iv made with my walking and mobility.

[Djbomer]

Hi l had an ankle fusion 30years ago and it hasn't been to bad at all. But in the last 5 years it's cause my foot to change shape witch caused a callus and alsour. But my podiatrist has sorted it all out and walking better than I have for years. Good luck.

[stig51]

Thank you for your comments. Much appreciated

[donnie7]

About 10 years ago I had my ankle fused called an arthodesis. It was a success in the straightening of my foot. I could not keep going much longer with the joints crunching. I have nice custom made orthotic boots. It was a longer process in having the plaster on longer as we are inland from Brisbane Qld by 8 to 9 hours. Then a moon boot. Took a long while but other people may be different in length of time. Very glad I had the operation as it has been the most successful operation I have had. Hope all goes well for you. I live in Australia. Madonna

[stig51 in reply to donnie7]

Thank you I really appreciate your comments