Re: Knee fusion

[Guest guest]

Hello all,

I have prev mentioned the fact that I have to have a knee fusion in about 4

weeks from now but no response. Is there anyone who has had this, also if

this doesn't work I will prob. have to have an above the knee amputation. The

fusion is due to so many dislocations, I have had a patella realignment, and

a knee replacement is no good due to the lack of muscle to hold the knee in

place. Is there anyone who could respond as no one has prev responded to any of

the 'posts' I have 'posted'.

Jill

[Guest guest]

Jill,

I have not had any experience with this. I still wanted to offer my

support to you and urge you to get as many second or third or forth

opinions until you find one thats right for you. Perhaps, there is a

doctor who is familiar with your condition and maybe he or somebody

else he knows, might be aware of a treatment thats would work better

for you. What exactly does a knee infusion entale? Will you be able

to bend your knee or walk as a result?

Take it easy,

Jane

[Guest guest]

Hi Jill,

I don't know what knee fusion entails but it sounds pretty major.

My doctor has wanted to do ankle fusions on me for a number of years but I just

keep doing my physio to keep my muscles strong and I wear AFOs all the time.

This has worked well for me. Maybe there is a knee brace that will keep your

patella in place and you can supplement that with physio. But at the end of the

day it all comes down to the quality of life you will enjoy.

If you think a knee fusion is something that will make your life better than go

for it, but if it will just cause different problems and make things more

difficult for you than I would seriously think twice about it. Just because

things can be done doesn't always mean they should be done.... Best of luck and

best wishes...

Jeff

[Guest guest]

Hi Jane,

Thank you so much for your reply. After the fusion I will not be able to bend

the eg at all and it will be a couple of inches shorter. The advantage is it

will take away all the pain as at the moment I cannot walk due to the pain. The

surgeon I have I do trust as he has had training and personal knowledge of CMT,

he is very good, he even offered to meet me at the hospital at 8.00 am on a

Sunday morning to give me an injection in the knee so I could get through my

wedding day! I know the NHS here in England is faulted my many folk over here

but I think I have been lucky. Thank you again Jane for reply

and look after yourself and yours.

Jill

[Guest guest]

Thank you Jeff for your reply, I have tried many knee braces, full leg braces

and have worn AFOs for about 20 years now (That makes me sound so old ha ha) I

am 45 and do wonder at times what is ahead. BUT Today I have found out I am

going to be a Nanna!!!!

Thanks to all out there and love to all.

Jill

[Guest guest]

Hi Jill,

This sounds very extreme. How many dislocations have you had?

Are you sure this is muscle related and not also ligament related?

Be super careful - if ligament related the healing of loose ligaments is

different than normal ones. My own doctor says that surgery in the case of my

elbow dislocation (I am having a reconstruction using tendons into bones to

replace the ligaments damaged) may not heal right and at best it will only put

me back to where I was pre-injury.

Have you had a second opinion? Can you ask your doctor to put you in touch with

others who have had the same? I would also make sure that you are seeing a

specialist - orthopaedics is so specialised now most doctors have a favourite

joint or area of the body.

Good luck,

Donna

[Guest guest]

Hi Donna,

I have had 4 really bad dislocations where I have had to be in a splint for

several weeks and so many small ones I have lost count - e.g turning upper part

of body and the knee would slip out but go back in as soon as I turned upper

body back. My consultant specializes in just knees and does have great

knowledge in CMT. I appreciate all replys and thank you to those who

congratulated me on me becominig a Nanna.

I have 2 boys, the eldest is 25 and a Prison Officer and the dad to be is 22 and

runs 3 restaraunts, both boys don't seem to have any signs of CMT and the type I

have cannot be confirmed from blood

tests or electrical impulse tests. Anyway love to all and take care.

Jill

[Guest guest]

Hi Jill,

I just noticed you were in the UK, and I am too. Where is your doctor

practicing?

I have my orthopaedic through a recommendation from the National Hospital for

Neurology. He practises on NHS time at the Royal National Orthopaedic. He is

very good and does some work with loose joints / hyperlaxity as well as CMT.

Please make sure to ask your doctor about the hyperlaxity issue. I was really

amazed that my orthopaedic instantly diagnosed Ehlers Danlos so I am still a bit

sceptical about this, but with ED apparently dislocations are totally normal as

is intense joint pain in the joint that had the dislocation. I am not sure that

more surgery will necessarily get rid of the pain either. It may just be

different.

Keep me posted. If you want I can ask my neurology clinic for the name of a

good knee doctor for a second opinion. Really orthopaedics now is super

specialised, you don't want a general orthopaedic doctor doing radical surgery.

You want the joint specialist.

Good luck,

Donna from London

[Guest guest]

Hi Jill,

For my knees, I had about 3 or 4 " bad " dislocations each side, most when I was

in growth spurt years.

Since I have had surgery on my knees - both - I have had knee releases. This

nowadays is seen as really extreme since it does not replicate the body but

instead removes the fundamental things.

Since then I have had more partial dislocations than I can count.

But I have also started partner stretching - isolated stretching - which is

taking some of the tension off the ligaments and tendons and muscles that make

me more prone to dislocations.

Even though you like your doctor I would get another or two more opinions.

I popped my elbow recently and have done it twice since (three times in total).

Doctors are not offended with the opinions - actually they encourage them. My

doctor gave me the names of the top five elbow guys in the UK. I saw a non

elbow guy which did not inspire confidence except in my doctor who was highly

recommended. I am probably getting one more opinion pre-surgery just to be

sure. With joints we have to live with the choice forever.

Where in the UK do you live? Maybe I can if you go forward come to visit?

BTW, please please ask your doctor about Eheler's Danlos and hyperlaxity as this

impact treatment, healing and physio.

Let me know if you need any names. I love my CMT clinic at the National and my

clinical nurse is great with names phones and email.

Donna from London

[Guest guest]

Thanks Donna, I will bear yours and others ideas in mind, thank you once again.

Jill

[Guest guest]

Hi all,

Hopefully you or some of you will remember I was enquiring if anyone else had

had a knee fusion done. On the 7th Nov just gone I had it done. It was not an

easy operation, but I am left with a very stable and pain free knee (tho now

stiff). Yes I will have to get used to it, at the moment it is very convenient

for my Labrador to rest his head on ha ha! Hopefully it will work out for the

best.

Love to all,

Jill

[Guest guest]

Hi Jill,

Glad to hear that it all went well. I know we spoke about doctors and options,

and I am glad to hear that you made your decision and are pleased.

Good luck with the recovering - I hope yours goes as smooth as my elbow has been

going. I had stabilisation surgery in mid October, was fully casted for about 5

weeks, and now in a hinged brace for what will be a total of 7 weeks. It has

been pain free so far, and movement is slowly coming back.

Best wishes,

Donna from London

[Guest guest]

Thanks Donna, good luck for the future.

Jill