Re: wondering about tendon surgery and surgery in general

[Guest guest]

Hi Pam,

Well, you know I had the tendon surgery in childhood, so enough on

that. The type of surgery you mentioned IS still done.

Many people with CMT sometimes do not need surgery. Also, with

orthotics, and AFOs, bracing helps so much that people don't need

surgery. There are also those foot surgeries that are very complicated

involving muscles, nerves, ligaments, you name it, and it seems here at

least, orthopedists will do all they can to keep the patient on their

feet and comfortable without doing surgery.

Sometimes I wonder if I had in-shoe orthotics made when I was a kid,

would I have even needed that surgery at all.

Just my thoughts based on limited experience. Plus, I'm sure you

realize surgery on CMT feet is not a " cure " . I'm sure you'll hear from

others on this topic.

~ Gretchen

[Guest guest]

Hi Pam,

I am 42 yrs. old, and 6 years ago I had a Doctor here in Indianapolis

(who specializes in reconstructing CMT feet), completley tear down

and rebuild my left foot which at the time was much worse than my

right foot. Being a single mother of three, he would not even

consider doing both of my feet at the same time, as I was in a

wheelchair for 3 months,and three more months after that learning to

bear weight & walk on it again.

It was very painful, 4-6 months \pretty much living in a recliner with foot

elevated, & packed in ice, but all in all (I LOVE MY NEW FOOT), even though I

permanantly carry around about 14 pcs. of metal in my foot, & it looks like it

got caught in a meat grinder (scars,inscisions).

I am so glad I had it done & wish I could have my right one done, as it has

weakend an awful lot in the last few years. I had the tendon transfers done,

several bones broke & reset with pins & staples, & for the first time in my

life, I could feel my (HIGH) arch actually touching the floor.

But... I think the most helpful & most significant change was how he

set my heel towards the outside of my foot. It gave me more

balance,stability, & I no longer worry about my left ankle snapping on

me by stepping on the smallest pebble,(unlike my right foot that I

have not had surgery on).

My surgery foot has slightly atrophied back up a little bit,(as you cannot stop

the CMT) but compared to my right foot, the results of the surgery,pain,long

recovery,was well worth it.

If I could financially afford to be off work for 3-6 months right

now, I would have him do my right foot in a minute!

My Doctor is J. . Located in Avon, Indiana (right

outside of Indianapolis), he is passionate about what he does, and

travels the country teaching other doctors how to reconstruct CMT

feet. He takes my X-rays,(which he say's looks like a small toolbox)

and the video of my surgery with him on his travels. He calls me his

prize patient, as he has never done such an extensive surgery all at

one time on any of his CMT patients.

Hope this has helped you a little. If you have any questions, just

give me a holler. annnahbell@...

hbell

[Guest guest]

hbelle,

What a great success story. Did insurance cover the surgery? Did you wear

AFOs prior to the surgery?

[Guest guest]

Thanks for answering my post Gretchen, I am new to all this and it is very

confusing and depressing for me. I do know there is no cure for CMT but I just

thought if surgery is an option to help me it would be an option for most others

too. I also think if there is a chance for surgery to help me at this point and

keep me out of AFOs

for a while I will do it.

I guess it al comes down to what's right for each individual. I am just so sad,

I know there is always someone else out there that has it worse off than me and

I should count my blessings but I am just having a very hard time with this.

I cry everyday, mostly at night so my kids don't hear, I am just so

sad. I have started taking Lexapro and I hope it helps. I also cry

for my kids thinking that I may have passed it on to them. I hope

there is a cure in the next 20 years.

Pam

[Guest guest]

Hi hbell,

Thanks for writing and that really does help. Did you have any foot drop at all?

That's my main concern. My big toe is my main problem, I can't raise it at all

but the other toes seem to work.

I will take any pain what so ever if it helps me in the long run. That's great

that you were able to do that having 3 kids and

being single, good for you! Im glad it was all worth it for you.

I see my doc in land on the 21st of this month and I'm anxious to

hear what he has to say. I am also getting a second opinion from a

doc in Philadelphia in August. Thanks again.

Pam

[Guest guest]

,

Yes, insurance did cover the surgery. As far as the AFOs.... no I have never

been fitted for them...(stuborness & denial I guess)

hbell

[Guest guest]

Pam,

Yes I did & do have foot drop. It is not so bad in my left foot after the

surgery, but my right foot that I have had no surgery on is really bad with foot

drop. That is why I wish I could have it operated on, because I can still (6

yrs.) later tell what a help the surgery was to my left foot.

Good luck, and let me know if you decide to go for it.

hbell

[Guest guest]

Thanks hbell,

If there is anything the surgeon can do to help I am goin for it. I am

so happy yours was such a help and you are amazing to be able to have

gone through the surgery and be a single mom to three kids. Can you

tell me how your foot drop started?

My mother had it but I always remember her with it and we never really talked

about it. She has since past away (before I had any really symptoms) and I wish

she was here to be able to ask questions to.

I was looking at her old wedding pictures and she walked down the aisle in high,

very thin heels. I was shocked because I never knew her without foot drop and

she gave birth to me a year after they were married. Very strange!

I was always a clumbsy cautious kid and the last time I owned a pair of heels

was in 8th grade. lol.

Thanks

Pam

[Guest guest]

Pam,

Same here, I'm so clumbsy I can loose my balance standing still! My mother also

had it, and it was never talked about ( don't really

know if she knew) but she past away 21 yrs. ago and is the only one

in our family that I know of that had it. I have always had foot drop

for as long as I can remember. Only in my late 30's early 40's did I

really deteriorate.

hbelle