Ankle fusion, tendon transfer and first metatarsal raise.

[Tuzza]

Hello, hoping for some good advice (of course!) and relay of experiences re the above. I have just seen a very highly recommended ortopeadic consultant for the first time ever and the above operation has been recommended due to the nature of my inward heel/out turned ankle. It has reached a 'tipping point' which means more conservative approaches ie orthotics/physio won't impact on the ankle angle. My left ankle is nearly normal and feels strong but the right right leg takes a big strain compensating for asymmetrical nature of my CMT (is this common good people a the asymmetry that is?).

There is arthritis damage in the right ankle and this is why the fusion has been suggested. I am really worried about this though - mobility etc. I have two young children and want to as active as I can for them and I love going out dancing and having a good time. I can see why the first metatarsal needs to come up and why a tendon transfer and osteology to realign my foot underneath my body will be hugely beneficial. Has any one else felt in the same boat? I am not sure the level of pan I am in compared what I have ad from others warrants a fusion just now. The others aspects, yes! Looking for to some good replies to chew over. Thanks for reading. Sean.

[Tuzza]

Just to clarify, my left ankle and leg are good and strong. It is my right ankle where the problems lie........thanks and apologies for any glaring typos and poor English in the original post.......

[REGreen]

Dear Sean,

I had an ankle fusion on my left side when I was first diagnosed, as successive GP s failed to realise what was wrong,and, by the time I got to an orthopaedic surgeon who knew what I had, I could hardly walk. This first operation was not a success, but I have had it revised since, which improved it considerably and am about to have a third operation on it to try to get it as good as it can be. Yes it hurts a lot, but it did before any surgery and at least now I can walk with some semblance of normality. I had tendon transfers and several other procedures on my right ankle, but no fusion, and it is now almost as good as new, although it took some time to recover. If you have got to the stage where the surgeon is recommending fusion it must be fairly advanced. You have to think whether you want to risk it possibly being less than a brilliant success or taking a long time to show benefits or certainly getting worse.

Ask your surgeon about timing. Is the likely hood of a good result greater now than later or can it wait a while.

Good luck with it whatever you decide.

RE Green

[Tuzza in reply to REGreen]

Thank you for the reply. I am going to seek a second opinion on this. My problems seem more to do with function than pain. 'Talking' on this forum really helps clarify issues. Thanks again and glad you seem to be doing well.

[chicodex]

Well... I have looked into the possibility of surgical procedures and to me they seem so scarily brutal with not a huge measure of success, percentage - wise. My Dad has had all manner of operations since 1977 and now is comfortable in his motorised wheelchair at the age of 81 - personally I cannot face being operated on with no guarantee of a positive result, I'm just not convinced that the knowledge base exists to avail CMT sufferers with an entirely effective surgical solution as of yet.

[3gorgeouskids]

I am 3 weeks post operative from a fusion with tendon transfer too and have 3 children. I can relate to a lot of what youve mentioned.

Feel free to message me.

[miaeliza in reply to 3gorgeouskids]

Hi, thanks for the reply. How are things going?

[Tuzza in reply to 3gorgeouskids]

Hello again, how has your op been? Due mine in three weeks and still researching! Thanks, Sean

[lostnaturalist]

Hello!

I was diagnosed with CMT 3 years ago (I'm now aged 51) after my right ankle fell sideways following a broken bone in my foot. Before that I walked everywhere easily 5 to 10 miles a day and suddenly became a hobbler, couldn't hold my ankle straight and orthotics couldn't hold my ankle straight enough and produced horrible sores on my ankle. Two years ago come July, I had two pins in my right ankle, 3 memory clips and tendon transfer carried out and after a long period of rehabilitation it was one of the best things I ever had done. Its taken work to get my fitness back and I still wear insoles but its given me my independence back! I'm sure by know you've already made your decision but if you didn't have it done do think about it again.

[Tuzza in reply to lostnaturalist]

Hi, was it the fusion you had? Thanks, Sean.