Re: Has anyone had foot surgery for CMT?

[Guest guest]

Hi Mark,

I have had the surgery. Once you get to walk around time will go faster. I

was in a cast for 3 months. Same with my son. Yes the surgery helped. Just

being able find and put on a pair of shoes was nice.

As far as healing goes it takes a long time for all the swelling and

sensitivity to go away. But most of the healing is done in the 3 months.

In a message dated 6/28/2008 4:45:36 P.M. Pacific Daylight Time,

markstephan_56@... writes:

My question is; has anyone else had this surgery? How long did it take to

heal? Did it help?

**************Gas prices getting you down? Search AOL Autos for

fuel-efficient used cars.

(http://autos.aol.com/used?ncid=aolaut00050000000007)

[Guest guest]

Hi Mark,

I had an ankle and foot fusion about a year and a half ago. My bedrooms are on

the second floor and before going in for surgery I had a hospial bed put in the

dining room on the first floor. I lived down there for 2 months. One I was in a

walking boot I moved back upstairs again. I just layed around for a month and a

half and only went out for Dr visits. I had my wifi and TV. A visiting nurse

came by every other day to make me exercise in the wheelchair. They tried to get

me to use crutches but my balance is very bad so I ended up with a wheel chair.

Like you I had to chooch up the stairs backward with my good leg in order to get

in the house. I'm walking, the leg is swelling still but nowhere nearly as bad

as it did just after the surgery. In all I consider the surgery a success, I had

been walking on the side of my foot and had reoccurring repetitive stress ulcers

as a result. I spent last week trekking around a truck plant gathering data for

a technical manual, that is something that I would not have been able to do

before the surgery.

So all I can suggest is to beat down the urge to be active and accept that you

need to lay about for awhile, the rewards are worth it. Really, avoid the stairs

one fall and you undo everything, especially at this stage of recovery.

Ed

-------------- Original message from " markstephan_56 "

<markstephan_56@...>: --------------

I've been having a bad time with my AFOs for the past couple of

years and my doctor's recommended that I have my heal cord

lengthened, planar facia removed and a metatarsal or two fused to

keep my foot from supinating. I had the surgery two weeks ago and my

foot is in a non weight bearing cast and I'm using a walker and

wheelchair for mobility.

I'm housebound from the surgery, depending on others for transportation or to do

things for me while recovering. My question is; has anyone else had this

surgery? How long did it take to heal? Did it help?

I'm anxious to get back on my two feet again but have a feeling it'll be awhile.

I'll also have to get a new AFO too because of the changes to my left foot.

Once my left foot heals I'll repeat the surgery on the right foot.

I forgot to mention that I'm a 52 year old male, diagnosed since age

23. I live in a downstairs apartment and after surgery I had to

spend a week at a rehab center learning to use the walker and other

appliances but my biggest obstacle was climbing stairs and learning

to stand up at the top and bottom of the stairs using one leg and a

walker. It was challenging and still is but I can now do it.

They wanted me to hop from step to step and I refused stating that was dangerous

and my right foot/leg wasn't that strong anyway. We, it was actually my idea

was to scoot on my behind up and down and stand up by holding onto a rail and

the walker. It's a little shaky but it works.

Hope to hear from others who have had surgery for CMT.

Mark

[Guest guest]

Ed, thanks for the wonderful feedback. I'm into my second week of

recovery and all is going well. I'll have to go back to work with

this non weight bearing cast on so it looks like I'll be using my

walker and wheelchair at work. Fortunately I work at a nursing home

so assistance is available if needed. I'm taking your advice and

just taking it easy. My kids come over and play video games and keep

me company and the ex is even helpful picking up groceries, doing the

wash and even taking me here and there at my expense of course LOL!

As for the stairs, I only climb them when I have to which isn't to

often right now. I've got a doctor's appointment on Tuesday and then

another in 10 days after that so I'm good on stairs until it's time

to go back to work.

Mark

[Guest guest]

Hi Mark,

My first surgery was performed when I was 27 - I was diagnosed at 15 - I had the

Achilles tendon lengthened on my left foot, bones on the outsides of both feet

shaved down (wearing through the skin - causing sores) and the tendons cut on my

toes (not the big toes) to help straighten them. I'm 41 almost 42 now.

Last year I started a new round of surgeries. I was told in Nov 2005 that it was

time to use a wheelchair on a reg. basis and I couldn't live with that so I

started seeing an Ortho doctor who gave me the run around through 2006 - told me

to figure out a surgery on my own and go somewhere else to have it done.

I found a great doctor in Lebanon NH who performed my first triple arthodesis in

June of 07. He fused the whole ankle and legthened the achilles tendon. I did

almost 7 weeks no weight bearing and 6 of partial weight bearing. March of this

year I had the fusion on the left ankle, the achilles tendon legthened again and

a couple of cords

around the big toes lengthened because it was bent terribly. 

Hope

[Guest guest]

Hahaha - sorry, not used to Mom's laptop and sent the last message before I was

done.

 

I got the okay on6 /23 to start walking on my left foot. I am lucky enough to

have a mom to help me through this. I used a wheelchair to get around because I

wasn't strong enough to use the walker or crutches. I still have trouble with

them - my CMT really affects my hands.

I am looking at a few more surgeries. One is for the plantar blah blah thingy, I

asked him to discuss it with me in Sept as I am just trying to get to the point

where I can stand without so much pain. Mentally - I need a surgery break for

now, it's been a long haul.

This site is a great place to get information on surgeries - remember to ask

questions - so many doctors have no clue about CMT and it's effects - even my

doctor is learning still. I trust him - but not blindly. He's great about

answering questions frankly and without getting his hackles up. Good luck and

hang tough.

 

Hope

[Guest guest]

Mark,

Oh yes, I've had foot surgery, both feet at the same time. But that was

a long time ago, soft tissue tendon work, and in bed 4 weeks with hard

plaster casts, then another 4 weeks or so in walking casts. Hurt like

h*** to walk for awhile, but it did stop the feet from rolling and improved my

gait. As much as I hated the physical therapy after it was crucial to recovery.

The best part of it was going to the beach 3-4 times a week to walk in sand. I

still do this, just don't get to the beach as much as I'd like.

Gretchen

[Guest guest]

Hi Mark!

My 14 year old son had the same exact surgery in late January and

again 2 weeks ago on June 10th. (Left leg, then right) His left foot

healed up beautifully and the prognosis for the right is excellent.

We believe that he will be able to walk heel to toe for the first

time in over 7 years as soon as he out of the casts.

It took 8 total weeks of non-weight bearing cast, then another of 3

in a walking cast...but it was so gorgeous to see a foot lay flat on

the floor with a normal arch. It took another 10 days or so until he

was ready to actually put full pressure on the foot but he is doing

so well with it now and it has healed up well enough for him to lean

on during this non-weight bearing time frame. He is using a walker to

get to and from his bedroom to the wheelchair for longer around the

house excursions.

Hang in there. says it was soooo worth it!

[Guest guest]

Hi Mark,

 

I am a 66 year old female from PA who has had CMT since childhood, had triple

arthrodesis on right foot at 14.  I recently (February) had surgery on my left

foot, sounds like all you had done.  I had ankle fusion, fusion of big toe

joint, revision of foot fascia, revision of lower leg tendon.  I was in a non

wt. bearing cast for 6 weeks, then a boot brace for another 6 weeks partial wt.

bearing.  Since then I have been going without the boot brace as tolerated. 

 

When I go without the brace for longer than a hour my foot hurts, I have to get

off it and elevate it or put the brace on.  My foot looks very good and I have

had 8 weeks of physical therapy, however, because my leg muscles on the outside

of my leg are very weak, I am still turning out on my ankle, which causes pain

when not in the boot brace.  The doc said I may still need  a tendon transfer

done and/or a brace.  I had two different braces, neither of which I liked.  One

was a regular plastic AFO, which caused me blisters, even after adjustments. 

The second was a Arizona brace, made of leather, very expensive.  I was able to

walk better in it but could not find shoes that would accommodate it.  I wore it

at home without shoes and it felt good, that was prior to the surgery.  I could

not wear it out as it would not fit in shoes. 

 

I see the doc on July 8 and we will see what he says.  I don't like the thoughts

of another surgery as my neuropathy gets worse after each surgery and I have a

drug reaction (which we are unsure of what it is, we think it is anything with

morphine or codiene) which gives me a sunburn all over my body and I peel for

about a month.  After my surgery I used a wheelchair until I was able to do wt.

bearing, then it was a walker.  Now I use a cane all the time.  I am trying to

find the proper brace for me as I know there must be one that would work. 

Better yet, I need to find someone who knows enough about CMT who can make the

proper one for me.

 

I don't know if I've been of any help to you or not.  Let me know if there's

anything else you would like to know.

Pat

 

[Guest guest]

Pat,

Wow, sounds like you had the works done.

All I can share at this point is that perhaps you are pushing too hard

too soon. I am still in the midst of 3 months of non weight bearing which is

twice as long as you went, and it sounds like you had more done than I did. I

am not the most compliant patient in terms of the non weight bearing, especially

now as I am getting close to the end, but perhaps if you go slower you will

experience less pain.

P.

[Guest guest]

Wow! The recovery seems even worse that I thought! My doc told me to

expect 4 weeks non-weight bearing, 4 in walking and 4 in a boot.

People are saying 8 weeks non-weight bearing!!!!!

I have a house with stairs even to the downstairs bath, so recovery

here is impossible. I'm just praying I can delay the surgery until we

move, but haven't sold this house. Going to build, but that's expected

3-5 months from ground breaking.

This disease is a slow progression, but can sneak up on you fast. If I

knew how I'd be now, we would have moved a few years ago.

[Guest guest]

My foot surgery required 3 weeks non weight bearing and about 4 in a boot. It

was th best thing I ever did. I wish I had the time and $ for my left foot.

Defman

[Guest guest]

oops. did I say weeks? I meant months.

Defman

[Guest guest]

Hi ,

Yeah docs tend to try to only only convey the upside then when 4 weeks go by

they tell you that 6 to 8 is better. I think it's part of the God syndrome and

anyone who is not a doctor cannot objectively be dealt with. It's frustrating,

especially when you are a big boy and make plans using the input of people who

are supposed to know.

When I had my surgery, I had dealt with doctors on the job and figured that I

was going to be bullshitted in a professional manner and planned for 2 months

down time. I was not wrong. If you deal with doctors as you would an over

educated auto mechanic you will never be disappointed.

Ed

[Guest guest]

Hi Ed -

I guess it depends who your doctor is. My son's doctor was very

honest in predicting a minimum of 8 weeks non weight bearing with

another 4-6 weeks in a walking cast or a removable cast. He was

totally up front and explained to that there were no

guarantees with any time frame...

The one doctor that we've seen that seemed to have the " syndrome " was

not the one we selected to operate for that very reason.

[Guest guest]

Ed,

You may be right. It's been several docs that have come up with 4

weeks but plenty here and even my brother had 8 weeks.

You'd think a doc would preparer you for the worst and say 10 weeks,

then if you're ok in 8 you did better than expected. Maybe that kind

of recovery prediction scares people away. After all, doing surgery is

how they make their living.

I don't fear the surgery itself much it's the long hard recovery that

I'm afraid will drive me craze.