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So sorry to confuse and freak anyone out. Mine is an extree case... After an

incident on 9/11/01, I became very succeptible to infections, but was not aware

of it. I developed osteomyalitis in my lower legs. I ended up amputating the

left in May '04 and the right in july '05... I'll write more about it in my

story, as it developes with all of yours... Just know, mine is a one in a

million shot... it happens, but I'm sure only a couple of people nationwide a

year... My docs had never had to deal with it before me...

michael (minus thor)

jdgld@... wrote:

In a message dated 7/4/2006 3:00:29 P.M. Eastern Daylight Time,

writes:

are 12 and 13... They are so wonderful. But I have

agonized over the years, as the PA first then the amputations, would

make me a terrible paren

Please explain the amputations you keep referring to. You are scaring me to

death.

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

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  • 3 months later...

I agree..there is a Dr out there who can help you....you just need to find him.....I don't knowe where you are located, but here in Lewes, Delaware, we have a Dr wilson Choy who does a lot of revisions from other Drs.....even the other OS's here send there patients to him when they can't fix a problem.....I talked to one guy in PT who had struggled with a bad knee for years. and went to the OS for the Washington Redskins who told him there was nothing he could do for him.....well Dr choy operated and he is doing fine! Might be worth a trip to Delaware!!

Hang in there!

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If you HAVE to go to another state for help. My

present surgeon has been very very thorough and is

very calm. I hope the revision is a huge success. He

is rather disgusted with my original OS but doctors

do not criticize each other ...why?

Sherry

Re: TKR

-- I'm horrified at what you've had to go through. Please tell us what the subsequent surgeries did, and was it the same OS? Are you currently seeing the original OS who did the first surgery? If so, I think you should take a black marker & cover his name up in your phone book & find someone else. Sometimes, in a smallish town, or if doctors belong to the same organization, they won't contradict each other, so watch out for that.

DON'T GET YOUR LEG AMPUTATED!!!! There has to be a solution that will save your knee. Would it be possible for you to see someone at one of the big name hospitals, just for a consultation? Where, more or less, do you live?

I'm glad you got a better anti-depressant. I'm so sorry you've felt so bad for so long. Keep in touch with us. I'm sure we can help you get through this.

Ann S.

Hi There,I haven't written in a very long time. Have gone through a long spell of depression since my total knee replacement August 31, 2004. Since that time, have not been able to straighten out my knee or bend it. My knee is locked in a very painful position and I have been walking with a cane ever since my surgery. I have had three subsequent surgeries with no good results. My last hope will come hopefully soon with a nerve specialist. Hopefully this doctor will deaden the nerves in my knee to where I can work through the scar tissue to be able to move my knee. I have exhausted all avenue after this and my only option (which I have thought through and discussed with my husband and doctors) is to have my leg amputated above the knee. I know that I would still be facing phantom pain but anything is better then pain every minute, of every hour, of every day even being on pain meds. I'm on high doses of Percocet and Neurontin. Hopefully I won't have to go this route. My primary care physical changed my anti-depressant medication in August to Cymbalta which has worked wonders for me. Every day all I could think of was suicide and treated my husband so badly along with other members of my family, friends, and doctors. Cymbalta has made a big difference for me. I don't think of suicide but every once in a great while now, if that. I just wanted to get some people who know me on this forum up-to-date on what was going on with me. If anyone has a response, I'd love to hear from you. from Michigan

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, I forgot to mention that too. My new OS

Dr. Heeter does a lot so sports medicine and

operates on many pro athletes. So, if ya don't mind

coming to Minnesota....

Sherry

Re: Amputation

I agree..there is a Dr out there who can help you....you just need to find him.....I don't knowe where you are located, but here in Lewes, Delaware, we have a Dr wilson Choy who does a lot of revisions from other Drs.....even the other OS's here send there patients to him when they can't fix a problem.....I talked to one guy in PT who had struggled with a bad knee for years. and went to the OS for the Washington Redskins who told him there was nothing he could do for him.....well Dr choy operated and he is doing fine! Might be worth a trip to Delaware!!

Hang in there!

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, You'll also find wonderful doctors at the Rubin Institute at Mt.Sinai in Baltimore, Md. They are the doctors of last resort and draw patient from around the world. Yet, it is a warm, personal place where patients are treated with great respect. At least one of their docs was featured on the Disovery Channel. Please, please do some research and consider the best docs in the country. You deserve to have the best care available. DonnaPets007@... wrote: I agree..there is a Dr out there who can help you....you just need to find him.....I don't knowe where you are located, but here in Lewes, Delaware, we have a Dr wilson Choy who does a lot of revisions from other Drs.....even the other OS's here send there patients to him when they can't fix a problem.....I talked to one guy in PT who had struggled with a bad knee for years. and went to the OS for the Washington Redskins who told him there was nothing he could do for him.....well Dr choy operated and he is doing fine! Might be worth a trip to Delaware!! Hang in there!

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  • 2 years later...
Guest guest

On Feb. 18 I had my left leg amputated below the knee due to complication of

CMT. This was a choice I made when looking at future surgeries and recovery

times.

Surgery went quickly. It would be more correct to say I had above-the-ankle

rather than below-the-knee because I have a relatively long residual stump (9

1/2 " )

Two nights in the hospital. I was overly familiar with crutches, so getting

around wasn't much more of a problem.

For two weeks I wore a 'Flowtech' brace, which is a splint. It kept me from

bending my knee. Much like a cast, I was very glad when it came off. It came off

the same day I had the staples out. The Flowtech slips on-and-off for bandage

changes, cleaning, and the occasional scratching.

A few days after the FLowtech came off, I began working with the prosthetist.

I took my first steps on my fake leg on March 31 with crutches bearing most of

the weight. Fit checks took another week. I was able to take my leg home April

7, after my first rehab appointment - still using crutches.

I work on game days for my local Arena Football team. I interact with officials,

cheerleaders and promotions getting them on and off the field on time.

On April 10, less than 8 weeks after surgery, I walked onto the field during

pre-game, leaving my cane by the doors. I used the cane during the game, but I

was able to make a short trip through the end zone without any help.

Last week, i gave up the cane entirely. My gait is more " normal " than it has

ever been. My blood pressure dropped 80 points after surgery - after which time

they attributed my High Blood Pressure to the pain I was in. I walk easier than

I have in a long, long time.

I am without pain.

This was a damn scary thing to do, but, so far, it has had he desired results.

SLB

Peoria, IL

" Don't ask me. I'm stumped. "

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Jen,

This was my second surgery on this foot (but there would have been more). I

simply cannot be bed-ridden for three months.

I am very happy to have moved on.

Shaun

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I am working through some minor inconveniences with the prosthetic, but I am

glad I made this decision.

Basically, my doctor did not want to do this. However, when he describe the

procudure as originally planned, it involved a 'halo' device around my foot and

the possibility of 3 months of bed rest. He said it was either this or

amputation.

So I started asking questions about the amputation. I eventually asked him what

he would do if he were in my shoes. He said, because the recovery time would be

so much less and it would be the last surgery, he would choose amputation.

That led me to asking myself some hard questions, consulting with my family,

making a decision, having a mini-panic-attack, and coming to the realization

that this was the best course of action for me.

Shaun

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  • 1 year later...

Hello, thanks for all the posts on amputation. I have decided this is the best

route for me. 23 suregeries is enough. I am here in the hospital now waiting

to go to the operating room. I have such peace over this decision and I don't

think I will have regrets. Please keep me in your thoughts and prayers.

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i wish you well and lots of luck, keep us updated when you feel like it, jim d

>

> Hello, thanks for all the posts on amputation. I have decided this is the

best route for me. 23 suregeries is enough. I am here in the hospital now

waiting to go to the operating room. I have such peace over this decision and I

don't think I will have regrets. Please keep me in your thoughts and prayers.

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Hi Jen,

I had to take the same decision as yourself and I have not regretted it. Within

the CMT group, there are folk who are mildely affected and those far worse.

Unfort. I do feel that if you are more affected then you are made to feel that

you are 'unusual' you are not! Some and many folk can exercise and swim and do

all sorts of 'alternative' type stuff, but there are many others that cant.

There is a lady in this group who I came across in the early 80's and to me she

really is the real deal in info - she started (without prejudice) I believe the

CMT International - Crabtree. I remember reading her letter to me in the

80's and I cried, I was talking to someone who understood, not someone who

preached or 'well I can do such and such'. is a great and all rounded

person to speak with. Good Luck,

love Jill xx

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Jen,

I am Praying for God's Speed over you... I'm happy to see that YOU have a sense

of Peace about it... that means alot... please do update us when you feel

better... God Bless.

Tracey

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