ankle fusion input/advice

[Guest guest]

Hi, Hope & ,

I had both ankles done at 12 yrs. of age. You are like a fish out of water.

You have to hold on to things to be steady. I've broken my toes many times,

never my ankles though. I learned to touch a wall and I could steady myself.

I didn't turn ankles; however, the tendon in front running up leg pulled my foot

up and I walked on the outside, didn't have much fat on sole of feet, and had

painful bunions develop under my little toe at base on foot. These were actual

corns.

If I stepped on a rock, it would shoot a pain up my leg and my knee would go

out. I went to a podiatrist and he cut it out with no pain, no

problem....instant relief. So if you have those, get them cut out! It's an in

office easy procedure, and instant relief when you put your foot down. He said

the corn was acting like a cushion for the bone in my foot but created a pointed

tip and it was hitting a nerve.

They must have taken some tendons out around ankles and veins, as I don't have

pain. You break bones below fusions and above fusions when you fall. I fell

straight down like squatting; therefore, breaking bones. Fusions carried me for

about 30 years, can't complain.

However, if I developed CMT later in life, I'd just go with the AFOs and later

forearm crutches.

Donna B. in Texas

[Guest guest]

Thank you, Sherry. Were you in AFOs before the surgery?

[Guest guest]

Thank you ,

Perhaps you could persuade your ex to propose a second time and get that other

ankle fixed??

[Guest guest]

I'm sorry to hear it Jen. How old were you when you had it done please? Were you

in AFOs before the surgery? After? Was there a time when the surgery worked for

you at all?

Hope

[Guest guest]

Hello Gretchen,

I was diagnosed at 15 and not told that CMT was a type of MD or that there was

any such thing as the MDA clinic that meets monthly to see patients. I was

fitted for AFOs and when I told the Dr that they caused me a great deal of pain,

the jerk told me to learn to live with it. I went home and tossed the dang

things in a closet and never went back to see the Dr.

At 22 or 23 I could still walk without the AFOs but was finding it hard to keep

my stirrups while horseback riding so I went to NE Brace and a woman there

helped me design a pair of AFOs she also told me about the MDA clinic. I visited

them when I was 26 and my AFOs were in sad shape. I am not terribly impressed

with these clinics as most Dr.s don't really seem to know that much about the

disease. We have Neurologists and a Physical therapist but that doesn't really

do a heck of a lot for you when your insurance won't allow more than 12 visits

to the PT clinic in a years time or you need an orthopaedic Dr.

Once upon a time they had one Ortho Doc that lengthened one of my Achilles

tendons, then she left the clinic. About 9 years ago I found walking without the

braces was getting tougher and I was falling more so I wore them whenever I was

out and about. 2 years ago I went for Physical Therapy because my ankles were

turning out and I was always slightly bent at the knees to help keep my balance,

they were able to help me stand straighter but the pain in my feet and ankles

was so intense.

Last Sept I could barely walk without my braces and used a cane in the house, I

wore them everywhere else. In November I couldn't walk without the braces at all

and can only stand or walk for a few minutes at most. That's when they said it

was time for a wheelchair. Too late to make this long story short, sorry. To

answer your questions, yes I wear AFOs but know the ankles are flopped over the

edges.

I don't know what Helios are, I tried PT, I wear New Balance sneakers only and

none of the doctors I have seen know anything about CMT but I have seen a few

that are Kings of the Fusions. When asked how CMT would affect the surgery and

vice versa, the king of kings just shrugged and said he didn't know but if he

fused enough crap together how could the muscles pull the foot out of whack?

I got the feeling that he was thinking that he can straighten 'em what happens

after the surgery is not his concern. The other Dr.'s want to start small and

just keep performing little surgeries to see how it goes. Can you say Guinea

Pig??

Hope

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[Guest guest]

Hope,

I was 18 and 19 when I had my first foot surgeries. Those were basically

tendon transfers and lowered my arch and made my heel bone smaller. Then I had

a subtaler fusion and (I don't remember what this was called) The doctor removed

my heel and repositioned it and screwed it back on. I was about 28 when I had

those done. The first surgeries lasted about 5 years. The fusion lasted maybe

a year and I broke both fusions.

Now, I am also concidering a triple arthrodesis as I also live in severe pain.

The thought of living pain free is inticing but the last fusion I had was very

difficult and I ended up in worse pain then before. There are risks with every

surgery so now I need to

decide if I want to risk being in even more pain. No pain meds works

anymore.

I was given my first pair of AFOs when I was 18. However, I was stubborn and

hardly wore them until I got so bad that, like you, now I can't walk without

them. I use a wheelchair when I am out and about. If you have anymore

questions please let me know.

Thanks.

Jen

[Guest guest]

Hope,

In answer to your question (below), no, I didn't wear AFOs before I

had the triple arthrodesis on my ankle bones. I could have used the

AFOs, though, before the surgery. For years my feet had been

deformed, high arches (which were released when my orthopoedist did

the triple arthrodesis), hammer toes, which I still have, and such a

tendency to walk on the outside of my feet that I was becoming really

disabled. The surgery took care of the problem of deformities in

everything but my toes.

My feet 'grew' in length so I had to go up a shoe size, shoes fit easier, and

walking was much easier. Running became impossible, I'm not sure why but I think

it was because of the arch release, not enuf spring left in my feet.

So... there are always pros and cons to surgery. It was painful for a few days,

and uncomfortable to wear a cast for a matter of months, but it was do-able for

me. One thing this type of surgery can do is leave a little movement room in

your ankle. I'm not sure the ankle fusion does that, you'd have to check with

the others and ask your doctor.

Hope this helps!

Sherry

>

> Thank you, Sherry. Were you in AFOs before the surgery?

>

[Guest guest]

Hope,

I wrote to answer your question about whether I wore AFOs before I had triple

arthrodesis surgery but somehow my message never made it to posting. I think the

website timed out on me. Will try again!

No, I didn't wear AFOs before I had foot reconstructive surgery. But I confess I

could have used them for many years, was just too bloody-minded (I know that's

an English word and I'm American, but my hubby is English). When I had the

triple arthrodesis surgery, one foot at a time, I also had my arch released

(don't know what you call it medically), and after the surgery I could suddenly

wear off-the-rack shoes very easily plus I could walk with a better gate, and my

hips didn't sway so much as I compensated for the way my foot turned inward,

resting on the outside edge.

I have to confess, I could never run or jump after the surgery. I

think the arch release business took away any springiness that had

remained in my feet. I only had pain for a week or so after surgery.

After the first week, the discomfort was in wearing a cast and

walking on crutches, but I only spent about 5 or six weeks on

crutches with each foot surgery. The cast came off after 3 months.

Hope this info helps!

Sherry

[Guest guest]

Hi Sherry,

Actually I did receive your first email. Thank you! I was just trying to go thru

all of the emails. This seems so odd, so many people with CMT. You know the

doctors say its so common yet I've met only one other person with it in all my

(almost) 40 years! No one in my family has it and I was always so secretive

about it (probably why I've never met anyone else with CMT) It's nice to find

people who really know and understand what I'm talking about. Thanks again, I've

got a lot of information to digest here. Talk to you soon.

Hope

[Guest guest]

Hello Hope,

My dad had ankle fusion on both ankles at age 13. At the time there wasn't alot

of information about CMT, so they didn't really know what was wrong other than

his ankles rolling out and him falling alot. The ankle fusion actually caused

his calves to waste away faster than they would have otherwise. Not sure about

triple arthrodesis, but I would not suggest anklke fusion at all, just because

of the trials I saw my dad go through during my life. His calves at the

'thickest' part are no bigger than my wrists.

Hope this helps,

[Guest guest]

I had ankle fusion. I am very happy with it. Your calves do get weaker and

you can't go up any steps or stairs without a hand rail to rope yourself up.

I wouldn't have a child fused but as an adult it has worked out well for me.

Unless I have to go up steps then forget it.

[Guest guest]

Hello to all and thank you for your input.

I have been waiting for a call back from the MDA doctor. I gave her a list of

Doctor's whose names I received from all of you. Been a little over two weeks

with no response.

My 24 yr old cousin passed away just last week so I haven't been hounding the

Doctor's like I normally do only because I needed to focus my attention on my

family and helping them through this ordeal. I am finding it difficult to see my

way through until next year for any surgery.

It seems my feet and ankles are getting worse by the day and the pain is

escalating. With grieving, the foot/ankle pain, barely being able to get around,

training a new person at work who doesn't have 2 brain cells to rub together and

trying to find a new job where I can get the respect I deserve and an increase

in pay, I think I am going insane. Oh wait....and the extremely hot weather! Man

does the heat suck! There, I'm griping again, sorry. I am just really crabby and

am venting.

Hope all of you are able to keep cool, I'm gonna go now before I find more to

complain about!

Hope