surgery

[Guest guest]

. . .

I'm glad you've found a surgeon . . . He doesn't sound

too great but maybe you can make a convert out of him.

If you were in the States, we'd tell you to find

another doc!

I'd suggest copying photos of explanted women and

taking them to him. . . You can pick up almost any

photo (some are protected) from the net by using the

right mouse button. Click on the photo, then " Save

Image As " . . . Give the doc a challenge to make you

look just as good! Maybe he'll rise to the challenge!

The group has some photos on Shutterfly, and

www.explantation.com has more.

Keep sticking to your guns! . . . Later you can stop

by his office and show him a new you!

Hugs and prayers,

Rogene

[Guest guest]

Dear Sue,

I am in the same boat.

I went to a foot doctor to talk about orthotics and he told me I needed surgery.

He says he is familiar with CMT, but the more I talk to him I have my doubts.

I am going for another opinion

after the holidays. I am going to get 3.

My foot rolls and I have very high arches as well. I am going to do research and

ask lots of questions and interview doctors. I figured I am paying them and

they work for me, so I am going to ask a million questions.

Carol

[Guest guest]

Hi Sue,

Before you make that final decision to have surgery now or not, be

sure to get at least 2 OTHER opinions - from orthopedists

specializing in feet, and preferrably surgeons who have had surgical

experience with CMT. Do not let these MDA docs " scare " you or " push "

you into anything.

Get the facts from each doctor. Have them explain what surgery they

will do, get them to draw you pictures of it. Check each doctor's

credentials carefully. Ask how many CMT feet they have performed

surgery on and what the outcome was. Ask if they can give you

referrals to meet their other patients.

CMT feet are so special, and when surgery is involved, they need

extra special knowledge and care.

You didn't say if you are wearing AFOs or in shoe orthotics now, but

if you aren't, this might be a way to go instead of surgery.

Sometimes surgery isn't the answer, sometimes it will mechanically

benefit the person - but surgery will not take CMT away. I had

surgery on both feet as a kid. I hated it then, but it has lasted a

lifetime. It was only " soft tissue surgery " - meaning tendons, but

that is what I needed.

Hope this helps.

~ Gretchen

[Guest guest]

My husband's noticing his symptoms started after an auto accident. It was late

onset, about 59 or 60. He always remembered the high arches. He is now 77 and

it has progressed significantly. His gene test was negative after Athena

repeated an inconclusive one.

He almost certainly has CMT as he had THE feet shown in the pictures. One of

his legs developed into a twig, and the

other was champagne leg, although it is now approaching twig. Both hands have

lost some muscle, and now his thighs are starting to be affected. We are

waiting for new genes to be added so our 23 year old son with mild scoliosis and

slight pectus incavatum can have in vitro with pre-implantation diagnosis.

If Athena adds genes to the test, I assume I'll read it in Gretchen's wonderful

newsletter.

The reason for my writing is my stepson. He is 49. He has THE feet and no

symptoms. He is an active surfer. You all keep talking about surgery. Is

there surgery to have before the deformities set in that would help prevent

some of the downslide?

I know my husband regrets putting off braces when the doctor first suggested

because of the subsequent deformities, but no one ever

suggested foot surgery. If there is some surgery at what point is it best;

when do I confront my stepson with his probable diagnosis so he can have it?

Right now he probably doesn't want to know.

Elinor

[Guest guest]

Carol, My podiatrist, Dr. , on EuGallie Blvd. is excellent. He

has preformed 4 surgeries on my feet and all have been successful.

[Guest guest]

Thank you for the info. I am going to call him Monday for an appt. If

ever you would like to meet someday.. I would love too.. you can email me at my

_cpasko45@..._ (mailto:cpasko45@...)

Carol

[Guest guest]

I do wear AFOs. I have had CMT since I was 12 years old and I am

now 40 years old. My left foot is doing fine. Its just my right

foot. I just need to get some more opinions.

Thanks

Sue

[Guest guest]

Sue,

Gretchen is right. MAKE SURE that this Dr. has performed surgery on CMT feet. I

had major reconsructive surgery 6 years ago by a Dr. who specializes in CMT

feet, and he showed me several before and after pictures of the CMT feet he had

operated on.

Also, surgery does not take away CMT, but may give you a ton of relief in the

long run.

Donna in Indy.

[Guest guest]

Sue,

If you have the time for recovery form the surgery, I highly recommend it.

I had my right foot done 13 years ago by a surgeon here in Seattle, Dr. Sigvard

Hanson.

If I had the time for recovery I would have the left done because it is now

deforming and actually causing me pain because of the pinky bone protruding from

the side (not actually through).

[Guest guest]

Debbie,

Go back to post # 41933 where I shared with someone else about my foot

surgery.

~ Gretchen

[Guest guest]

Hi ,

I read the same thing too. One thing to remember about CMT related

surgery - it won't take your CMT away. CMT is much more that just

having feet/ankle surgery etc. Last Fall the doctor in that article

asked ME to 'mentor him' in CMT. He wanted to meet with me, etc. It

never happened.

As you know I had tendon surgery as a kid and it has lasted all this

time, but duh, I still have CMT. I have hammertoes, high arches, and

even a bunion. None of it hurts, and you know I lead a very active

life. You also know that I have had burning feet pain since I was 7

years old and I still have " hot feet " . You know that I swear by my

in-shoe custom orthotics and New Balance shoes and I check in with Stefan Moser

at http://swissbalance.com once a year to make any adjustments or have a check

up.

I am still prone to loss of balance and tremors which are part of my

CMT. Did foot surgery help that? No. What has helped the most is

exercise, nutrition, pacing my activities/work, lowering stress through

meditation, maintaining a positive and grateful attitude, ad infinitum.

Certain " orthopedic " aspects of surgery CAN improve one's 'quality of life' -

however, I'd suggest you get several opinions, and as for

the 'regional anesthesia and outpatient surgery' on one's feet - that just makes

me wince a bit. If I was having anymore foot surgery, believe me, I'd question

this and a whole lot more.

In the March 19 Los Angeles Times, there was an article on this doctor and how

he is helping dancers orthopedic needs - yes, even dancers have specific foot

needs; so email me, I'll fill you in. I think Tom in our group had some

reconstruction surgery that went very well and is about our age. You might go

through the archives for his posts.

~ Gretchen

[Guest guest]

Gretchen:

First, thanks for your quick reply.....you are incredible !!!!! I appreciate

the info. and will definitely due all my research before I make any kind of

decision. Thanks again.

---------------------------------

Pinpoint customers who are looking for what you sell.

[Guest guest]

,

Due to injuries my left ankle had jammed to one side causing me to walk on the

outside edge of my foot. To put it mildly it hurt, and my feet are pretty much

dead as far as pain. I had foot and ankle fusion done the first week of

January. I finally got out of the walking boot 3 weeks ago. I'd recommend that

surgery to others based on my experience.

I no longer have to try 6 different pairs of shoes to find a pair that will

work. All day yesterday I was wearing a pair of failures from 2 years ago.

After seeing the effects AFOs had on my father and a cousin, I've been pretty

hard headed about not using them.

My foot has been dropping periodically and I've been falling every now and then

since I can remember. When I start falling more than not, I'll look into AFOs.

Presently it seems the foot surgery has ended the need to even consider AFOs for

a long time(I hope). I've lost a lot of muscle mass in my calves since turning

40, but the muscles in my insteps and my big toes still work, so surgery was an

option.

There really is no way to make a blanket statement though, you really need to

consider your individual case. My CMT though relatively severe, is not as

limiting as that of others in my family. I would think that tendon transfer

surgery relies heavily on the degree of muscle function to be successful. If

your muscles no longer work sticking the bones together a little better isn't

going to do much.

Ed

[Guest guest]

Ed:

Thanks for the info. I am definitely listening and you have some great points.

I am definitely not in a hurrry to do anything until I get more info.

[Guest guest]

Hi ,

I am planning on have 4 procedures at once done later this year....all

the ones you mention sound familiar. He did say when he looked at my

foot that it as still flexible and not rigid that may be a factor in

the procedures. I will be on crutches for 6 weeks and the still in a

cast for another set of weeks can't remember the exact time. I will

do the procedures as an out patient and could go home that night or

the next morning.

My doctor, Jeffery , is located in St. Louis at Washington University. I

am going to him because on the website in said specializes in foot deformities

and listed CMT. I am anxious to

get it taken care of but have to wait until school starts for my boys

and my husband's job slows down.

I'll let you know when I schedule it.

Vicky

[Guest guest]

Hi Vicky:

Good Luck...and yes please let me know how it goes.

[Guest guest]

My 15 year old son is scheduled with Dr. Pfeffer for multiple procedures (on one

foot) on an outpatient basis in a couple of weeks. We did meet with Dr. Pfeffer

in April and we were quite impressed with him. I guess only time will tell but,

I will report back on the results, recovery, etc. once the surgery takes place.

We will also be basing our decision on the second foot from our experiences with

the first. We have seen a number of orthopaedic surgeons over the years, all

with varying opinions, however, we were most impressed with Dr. Pfeffer.

Regards,

Geoff Woodward

Edmonton, Canada

[Guest guest]

Hi ,

My name is & I live in South East England. I Had both Achilles tendons

lengthened 10 years ago which really helped. Standing up straight had been

impossible for me until then.

But in the past year I have had forefoot reconstructions on both feet. General

anesthesia for both thank goodness! It was a very painful experience for me &

the atrophy has been very bad as a result of so much inactivity. However, it was

the correct thing to do. I was having a lot of pain as a result of my toes

curling underneath the front of my feet which made walking very painful & also

affected my balance.

Everyone has to make the decision regarding surgery on their own individual

circumstances but remember there is a price to pay re atrophy through so much

inactivity during recovery. But if you are determined to get up & regain your

fitness it is amazing how much improvement is possible.

It's all about quality of life for me.

If you wish to know more I can supply photos of pre & post surgery re forefoot

reconstruction.

Kind regards

Bloe

[Guest guest]

,

I would love to see before and after photos.

Geri

<If you wish to know more I can supply photos of pre & post surgery re forefoot

reconstruction.>

[Guest guest]

Hi :

Thanks for your reply: Yes I would love to see some before and after photos.

Did you have high arches to that we flattened thru surgery? My email is

franksakin@... if you could send me some photos.

Thank so much

[Guest guest]

Wow Vicky- You certainly did have quite a bit done. You should be so pleased

when you're completely healed. Just listen to your doctor. No weight means no

weight until it's time. My children and I between us have had most of those

surgeries.

I wish you a complete recovery and excellent results.

Barb

[Guest guest]

Update on my surgery.

Happy New Year.

I had my surgery on Dec. 18th. I had 6 procedures ...and I do not

know the technical term for any of them. I had my cast changed on

Friday and saw my foot for the first time and except for the scars and the minor

swelling it looks really good. The heel is straight and so are my toes - that

was a surprise my doctor was going to skip that procedure but once he got in

there and they pulled up he decided to do them and I am glad he did they look

great. I had the tendon transferred from the front of my leg to the weak side

of my foot that was pulling in my heel and making me walk on the outside of my

foot. I had the bone in my foot by my big toe broken but I can't remember

exactly the purpose in that unless that was part of the lowering if the arch. I

also had some tightening of the loose ligaments around the ankle. And the

tendon under my foot that was very tight loosened.

As far as the pain it was not too bad. I took my pain pills every 2 hours for

the first 2 days...and then started to phase them out. I told my doctor my

labor was worse. I was able to keep my toes above my nose for about 4-5 days

after the surgery which I think helped with the pain and swelling. I also have

a knee walker which is a wonderful device especially if you have balance

issues. Makes life a lot easier to move around since you can not put any weight

on the foot.

I go back in 3 weeks to get the pins taken out of the bone by my big

toe - not looking forward to that --. I am not sure if I will get to start put

weight on my foot at that time or I will have to wait a

couple more weeks. Then physical therapy will start and I will be in a hinged

brace and weaned off of that as the tendon gets stronger.

I will keep you all posted on the progress. So far so good.

take care

Vicky

[Guest guest]

Congrats on what it appears to be a successful surgery. I know what

you are going through. I had the same surgery in November, and am

getting the pins taken out tomorrow. I am thrilled for I know that it

is more than half way there to full recovery. Good luck to you in

your road of recovery. Ty

[Guest guest]

Hi Vicky- As long as you're completely healed you really shouldn't feel the

pins coming out. I didn't watch and was totally shocked when my doctor said " ok,

Barb I'm finished! "

Good luck.

Barb

[Guest guest]

I am not looking forward to them taking the pins out I have never had

it done before. Keep me posted and good luck with the rest of your

recovery.

Vicky