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[james4872]

Doctors are wanting to do surgery on both feet. .to correct high arch..hammer toes..and fuse things to stabilize weakness in my ankles..has anyone here had this procedure..is it worth the pain and trouble..any advice would be most appreciated..thank you in advance.

[oliverdeb]

i would listen to the professional Doctors and of coarse depends how you feel about it , but like any situation in life ,if you will benefit from surgery than do it , dont worry about pain that will go away , look at the long term benefits . no pain no gain my friend James

[Coffeeman]

Wow James I've never had all of that done. I think your doing the right thing by reaching out to people. It was recommended to me years ago but I declined. Maybe someone who has had this procedure will share it with all of us. Good luck!

[Thel]

Hi James I had a triple athrodesis 10 years or more,my left foot is fused and the pins holding it are now broken,my foot has never been the same since,I no doubt in time I will have to have more surgery,but I will cross that bridge when I have to.my two daughters have had surgery on there ankles and there has been some improvement with them,one daughter is awaiting an operation for an adjustment, it's the luck of the draw really and who your surgeon is, is till struggle with walking,balance and have difficulty with shoes,I wear a brace on my right foot because it's dropped and I just get on with life the best way I can,I was 12 years old when I had my first operation, now I'm nearly seventy,with lots of operations in between.

Good luck with what ever you decide,hope everything goes well for you.

[Morllyn]

My husband and his cousin both had this done in their teens. He said to tell you that he thought it was worth it. Without it his feet turned so that he walked on the outsides of his feet, and I mean way over on the sides, like you lay your foot over on its side then walk on it. He says it hurt but it was worth it.

[REGreen]

Dear James,

I have had three operations on my left foot and ankle and one on the right. I had got to the point where my left ankle was so loose and wobbly that I could hardly walk or stand on it, so something major had to be done. The first operation went wrong, but it is now fine; the foot faces forwards, it is at the the correct angle to my shin, flat on the ground and feels firm and secure. You should discuss carefully with your surgeon whether plates, a nail or screws are right for your feet. Sometimes it does hurt, a lot, but my last operation went very well and I had hardly any pain. On the other hand, both my feet and ankles were very painful before surgery.

I had tendon transfers on my right foot which worked for a while, but it is a progressive disease and this was only ever going to slow down the degeneration. In time I shall need my toes arch and ankle all done together on my right foot. I would have no hesitation in having it done when the time comes, but you do need talk it through thoroughly with your surgeon and give it plenty of time to recover. It gets very tedious being in plaster and not able to put any weight on that side for months but you have to give it time to recover and not be too impatient.

Good luck whatever you decide,

RE Green

[chatterbear]

That is a very good question, James. I think a lot would depend on your age. Over 60, probably not. Concerning my experience with surgery, I haven't had any due to lack of opportunity when I was younger, but two of my brothers both had "triples" in the late 1940's/early 1950's. It helped one of my brothers, but the other one not so much. The one it didn't help had many additional surgeries over the years. They had their surgeries done at the Shriners Hospital in San Francisco. I think it is worth taking the chance on surgery, though, because in my case without any surgery, my feet are so bad now that I can barely walk. They are shaped like the letter C, and I walk on the outside edges with the left one being much worse. Shoes that are comfortable are almost non existant. I sincerely wish the best for you.

[james4872]

Thank everyone for their opinions and support. .I greatly appreciate it.

[SAMBS]

Hi James - not an easy decion for you to make I know, having had 3 ops on my right foot over last 50+ yrs. currently have a screw slowly working its way up through my flesh from the plate it was attached to! Now my left foot has double hammer toes one joint pointing upwards, lower joint downwards. Like upside down W !

CMT is aslowly progressive disease, surgery for me has only been a temporary corrective solution., didn't stop further deformity occurring.

I also believe that for all of us here, it goes back to something in our genes or DNA, certainly something in our young health that set things in motion.

My Haematologist thinks much of my seemingly unrelated other health conditions, from which happily I don't feel ill, stem from my Hypothyroidism -

The Thyroid & Pituitary Gland are also inter-related. So if there is or has been an operation, as I had to remove a TB infected gland in my neck, it could have disturbed the Pituitary gland. Did you suffer from tonsillitis as a child and have your tonsils removed? Is your Immune system Ok! I researched my whole health history from birth and am now 69.

Just some thoughts for you to ponder on. About your own health history. There is still so much the Drs and scientists don't yet fully understand about our bodies and inter-related conditions.

Anyway I wish you well with your decision and it's outcome.

[Tewster]

Hi there,just joined this site,just had an op on all that you mention,and pink to straiten he toe,no pain at all while at home,had little for one night after the op then that was it,having cast off Monday so hoping to have the pin out and a walking cast,will be having other foot done in the near future????welcome to ask any questions...

[Nicho48]

Dear James I had the surgery you,mentioned. 45 years ago so that I could work, for me it was a great blessing,as I get older there are other difficulties that are connected with CMT that happen my cat has always been a slow moving type ,I use an electric wheele chair that folds up in the car ,for any distance I have to walk,it is a great help to me ..

[Jen1970]

Hi James

Have you read up on DBS braces

I want to know if we have them in the uk and if not why not , I have cmt type1 I have drop foot in both feet and high arches in both etc same old story most of us with cmt 1 have by the sound of it , I don’t want any ops , but the DBS braces correct the deformities over time I believe , does any one else have any more information on DBS braces

Jen x