CMT FOOT SURGERY: Has anyone ever had... - Charcot-Marie-Too...

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CMT FOOT SURGERY

Jogeemama
Jogeemama
β€’21 Replies

Has anyone ever had foot surgery to straighten their high arches? Any thoughts? It's seems like a pretty major surgery. I'm afraid to make it worse than it is. I saw a pic of a before & after, it look pretty impressive!

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Morllyn

My husband did, years ago, when he was in his teens I think. His arches had arched so much that he walked on the sides of his feet. He said that he wore the sides off of his shoes. His arches are still high but he can walk without crutches or a walker. He has braces due to drop foot.

He is 72 now so that was back in the late 1950's or early 1960's. I would think that they were much better at it now.

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Thel
Thel
in reply to Morllyn

Hi Marilyn I have had surgery many times,I had a triple athrodesis which made a difference to the high arch. But my foot has been worse since,I had high hopes of my feet being better but I am still struggling coming up to my 70th birthday this year,I also wear brace for the other foot, but the one I had most surgery on had to be fused,my pins holding my fusion together are now broken so who knows what will happen,my daughters are the same,but up to date procedures may be better now. Good luck.

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Morllyn
Morllyn
in reply to Thel

@Thel I was trying to remember what my husband called the surgeries that he has had, last night when I was responding, but he was asleep so I had to wait. He also had the triple arthrodesis and had his ankles and big toes fused. The pins holding his toes in place while they fused were removed afterwards. The ankle fusion was to stop it from turning outward.

Our son also has CMT and has very weak ankles. He has had multiple fractures of them over the years. He started wearing combat boots, years ago, to support them. Luckily he has never needed surgery for his CMT, at least not yet.

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REGreen

Dear Jogeemama,

I have had four operaions on my feet, three on the left and one on the right. My left foot was so bad by the time I found a doctor who recognised what was wrog that I had to have an ankle fusion. The first didn't work properly but the two subsequent operations have made a foot that looks like a foot and is strong and probably as good as it will ever be, and better still no longer hurts all the time. The mid foot surgery on the right foot worked well at first and is still strng and pain free. Unfortunately high insteps are not the obnly foot problem with CMT and I now ned more work on that foot as the outside of the foot rolls over and causes stress fractures which are painful.

I would say go for it, but recognise that CMT is progressive and one operation will not be a permanent cure; other problems may develop and you may need more surgery. Weigh up how much of handicap it is now, how much does it hurt and ask your surgeon about the long term futrure of your foot.

Best wishes, REGreen

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lckydb

Has anyone else got HNPP ?

I was diagnosed with HNPP over 6 years .. I am starting to suffer badly now and unable to work for the pain and struggle to do simple things ..

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Jogeemama
Jogeemama
in reply to lckydb

I am so sorry to hear you are in so much pain. Would acupuncture help stimulate your muscles? How about PT, to help strengthen your legs. Praying you will find a solution quickly!🌻

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lckydb
lckydb
in reply to Jogeemama

Hi Jogeemama,

Thank you for your reply, have you got HNPP ? I'm wanting to chat to people with it ? nut no I have not tried acupuncture. .. do you think it would work ?

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Jogeemama
Jogeemama
in reply to lckydb

Hi Ickydb~

I have CMT1A.

I did some research on acupuncture, and here is what I found:

naturalnews.com/026211_acup...

It looks like it can help. If you are in a lot of pain, might be worth it. I personally haven't done it. Successs w/others.

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SallyH_NCCMT
SallyH_NCCMT
in reply to lckydb

What is HNPP? i have not heard anything about it. Thank you!

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Jogeemama

Here is info on it. Hope it clarifies things.

en.m.wikipedia.org/wiki/Her...

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Justarose123

Yes, I had surgery on both. It relieved my daily calf pain, and nightly torture of foot cramping, swelling, views sticking out. It was so painful. I don't think they operated on arches, but nerve pain, from shorten tendons, released compressed nerves, it was 2007 I don't have the report on me, but could look it up if you needed more information. All I can say is it was a easy surgery to go though. And they relief I received from my high arches, and champagne shaped legs, lol the dr"so term,

Was so incredible. It was life changing for me. Rita 😊

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Jogeemama

So sorry Rita!!! Sounds painful & very inconvenient. Hope it's over soon!πŸ™πŸ™

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jean_rhodes

Hi I had fusion on right foot sept 16 feel I am able to put foot more straighter on floor but have been suffering since with infections had one screw removed march 17 am having to go hospital for redressing and packing every couple of days. Now been told that surgeon intents to take out all metal work. Am on 8 weeks of anti biotics which is causing me horrible rashes. Am hoping that things will improve as still in spilnt from sept.

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Jogeemama

I am so sorry, Jean!! Sounds very painful & inconvenient! Hope you are on the road to recovery soon!!πŸ™πŸ™

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indianahawkeye

Hi, since 1994 and 2000 I had 5 ops on each foot to correct different issues. The last 2 ops were done within 3 months of each other. However, these ops were done before I was diagnosed with CMT. None of the ops worked, as after about 6 months my feet returned to the way they had been before, if not worse. I'm not saying surgery won't work, just that it didn't work for me.

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Jogeemama

I'm leaning more towards not doing surgery. I can live with my deformed foot. Let that be the worst of it.

Thanks for your input. Sorry about your foot issues.

I posted somewhere on this sight, ALWAYS LET DRS. KNOW ABOUT YOUR CONDITION!! IT REALLY MATTERS, ESP. W/MEDS!!

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indianahawkeye

Just to add that both my feet and ankles have now been fused and my feet are full of metal and pins, and I have to wear leg braces and I mostly use a wheelchair now as walking is so painful.

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Jogeemama

Do you regret having the surgery? Would you have been in a wheelchair regardless?

So sorry!😞

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indianahawkeye

I don't regret having the surgery, and I suppose I would have still ended up in a wheelchair regardless. You have to do what you think is best for you.

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KaylaNicole

I recently just had the surgery about 2 months ago because i struggled with having high arches and walking on the outside of my foot due to the CMT. It was a pretty extensive surgery for me, I am still recovering from it. The difference in before and after pictures for me is impressive. The surgery is well worth it, even with all the pain!

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Justarose123

Yes I did 7 years ago..it has been a blessing.

If your dr reccomends it Id do. It..its very quick and yr mobile right away. But what a difference it relieves so much pain from yr calfs to yr feet thierself..h

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