Re: CMT & Knee Replacements

[Guest guest]

I also need major knee surgery, torn and impacted meniscus, but will it actually

be worth it? There's no way I can deal with any more pain in my life.

[Guest guest]

I don't know if it's worse when it's impacted, but 1 1/2 years ago my

wife had a meniscus repair and the surgery was pretty easy. It was

done with a scope. She wound up just recently having a full knee

replacement, so how useful the repair was is debatable. The knee

replacement is a much more difficult surgery. Oh .... she doesn't have

CMT.

[Guest guest]

:

I would do the surgery if major knee surgery has nothing to do with your CMT.

That pain and problem can resolve on its own after the surgery compared to CMT.

I still have pelvic pain from my pregnancy in the beginning of this year. If I

still have pain by the end of December I will get surgery to fix my pelvis and

to relieve the pain.

.

[Guest guest]

Hi,

I have CMT the onset approx. 8 yrs old, I am now 46. I used to dislocate my

right knee a lot and had patella realignment surgery in 1999, due to always

hyper extending the leg to create my balance I caused a lot of wear and tear.

A knee replacement was considered at length but was decided against as there

was not enough muscle strength left to support the replacement. In Nov. 07 I

had a knee fusion done - was left with a permanently stiff leg.

Hope this helps.

Jill

[Guest guest]

Hi ,

I have CMT type 1-A. Onset of syptoms was in early childhood. I am now 63

years old. I would say the CMT has progressed to moderately severe. I walk

with a cane or walking sticks as my balance is unreliable as is my strength. My

hands and arms are relatively strong which I attribute to nerve decompression

surgery.

Anyway, I had a double knee replacement last February at age 62. My rehab doc

was terrific. I was in the hospital for 3 days and then transferred to her

rehab unit for 10 days. She really understands CMT and kept me there until I

progressed to pretty much mobility with a walker. I had therapy for 5 hours a

day - exhausting but worth it. The pain in my knees is GONE! Which made it all

worthwhile.

This summer I progressed to walking with walking sticks about 2 miles a day, and

was actually able to fold myself into a kayak (Getting out wasn't so easy but

then...)

So if you are in constant pain from the knees I would say do it sooner rather

than later. I wish I'd had the surgery 7 years ago as I think I would be in

better shape now.

Good luck!

Penny

[Guest guest]

Thanks for the comments. It's my sister who needs the knee, but

there's some question if there's enough muscle left to support the

knee and rehab. She's going to Mayo clinic for an eval.

It sounds like it's sometimes possible in a CMT and sometimes not. I

understand a knee fusion can be very debilitating, but I guess that's

the worst case scenerio.

[Guest guest]

Hi ,

As I mentioned on my previous post I had the knee fusion and yes it is very

debilitating, four months ago I had an above knee amputation and I am coping

great! No pain in the knee (not got one) and no longer a prem. stiff leg. I

thought long and hard before the amp. and have no regrets at all. Everyone is

different, please give my love to your sister.

Jill x

[Guest guest]

Hi Jill,

Well, I guess amputation is one way to solve knee pain. :-) I won't

tell my sister that part. I have read of CMT people resorting to foot

amputation in cases of intractable pain and often were glad they did.

I will be having an ankle fusion but from what I understand will

probably walk better than I have in years. It's getting through through

the long rehab that's difficult.

Was your knee problem caused by the CMT gait? Mine aren't doing great

and I wonder if the added stress is going to mean I need to look at

replacement ... if it's even possible.

[Guest guest]

Hi ,

I was considered once for an ankle fusion but before they did it they made a

splint for me that would mimic an ankle fusion, I could not manage it as the

knee muscles (what was left) could not support the 'new' way of walking so I

opted against it. It was thru the gait that caused the problems with the knee

and the way I use to hyper extend the leg to gain added support/ balance when

standing.

Remember we are all different, my CMT is quite severe compared to many but

probably not as severe as others, take care and look after yourself and yours.

Jill x

[Guest guest]

,

Had my knee replaced July 15, should have had it done 5 yrs ago......how great,

I am 63 and it was easy, can walk better,just can't say enough good about the

procedure, I live in AZ. and the doctor I used is Dr. S. Duhon.

Joyce

[Guest guest]

Hi Jill,

I got several opinions and all said I badly need the ankle fusion.

None suggested there could be a problem walking, but I have an Arizona

AFO that they said would be like a fusion. I can walk OK with it, but

it's pretty uncomfortable so I don't wear it regularly. Walking is a

little harder with the brace, but docs say it will get easier with a

fusion once I get used to it.

My need for the fusion is because the ankle is turning pretty bad.

I've not had knee hyperextension problems or much of a toe drop problem.

[Guest guest]

Hi ,

I don't have knee problems but have bi-lateral hip replacements, both

revised once. I, too had problems with my foot. Last Feb. of 2008, I had

surgery on my left foot, a toe straightening, fusion of some bones, partial

removal of the plantar fascia, ligament transfer. After many weeks in a cast,

then a boot, and physical therapy, I found myself turning out on my ankle just

as bad as before the surgery.

It was determined the muscles in my feet and ankles were not strong enough to

hold my ankle stable. Thus, I had another surgery Oct. 31 to fuse the ankle

bones to prevent the turning out. I, too had an Arizona brace which held my

foot stable but found it hard finding a shoe to fit it into, and when I removed

the brace, walking was very difficult. I have 5 more weeks in the cast, then we

will see.

I am optomistic this surgery will do the trick. I will let you know how it

turned out. I know the flexibility won't be there, but when muscles are wasted

away there's no flexibility anyway.

Pat

[Guest guest]

Hi ,

Good luck in what ever you decide to do.

Jill x