Banner - Hide this banner





Author Topic: total knee replacement verses total leg replacement  (Read 5505 times)

0 Members and 1 Guest are viewing this topic.

Offline Kneemo

  • MINIgeek (20-50 posts)
  • **
  • Posts: 34
  • Liked: 0
total knee replacement verses total leg replacement
« on: August 10, 2006, 07:24:43 PM »
Hi, I have spent the last 17 years with an arthodesis (fusion) of the left knee, which has caused problems with my right knee and I have recently undergone a fusion of L5,S1 and have problems at L4,L5 in my spine.  I have tried on quite a few occasions, to find a surgeon to take down the arthrodesis and give me a total knee replacement.  Until now most surgeons have said they would not touch it with a barge pole.  I have now found a surgeon who may be able to help and replace my knee.  There are no promises with this surgery and I have been told, if it all goes wrong, they will gladly amputate my leg as I have requested.  I have recently been to see an osteopath, who has told me of another surgeon who is The Best (apparently) and if he can't replace my knee, no one can.  I had actually come to a decision to have my leg amputated and be done with it, a decision that has taken me ten years, but now I have been told of this other surgeon, I don't know what to do.  Can anyone give me any advice, is it possible to get my knee working again? If I'm brave enough would amputation be the answer?  I dont know, please help.

Much Love

Kneedeep
Ruptured ligaments R/K including 4 arthroscopies leading to arthritis (1982)
Shattered tibial plateau including 18 assorted operations leading to Arthrodesis (fusion) of the left Knee. Now awaiting possible amputation.
Prolapsed disc's L4 and L5 now fused and scaffolded with nuts and bolts.

Offline UK Girl !

  • SuperKNEEgeek
  • *****
  • *
  • *
  • Posts: 5992
  • Liked: 1
Re: total knee replacement verses total leg replacement
« Reply #1 on: August 10, 2006, 08:16:10 PM »
Hi Kneedeep

welcome to the board.

This is going to sound a bit sick but I am pleased that I have read your post - this is why;

when I first saw my current OS he said that all he could do to help me was arthrodesis as I was too young for TKR (Iam 43) He sent me away to think and research it to see what I thought - I had no choice but arthrodesis or TKR due to the OA creeping down my shinbone so it was now or possibly never!!

I went off and for four weeks read everything I could find, spoke to physios,doctors,nurses , friends and family. - The only decision that I could come to was that I NEVER wanted that done - due to hip, back other knee knock on effects.

I went back to my OS with my decision and then had a conference iwth two London Specialists and my OS along with about 10 trainees ::)

They all decided then that it would not be the right proceedure for me and both the London guys said they would do my TKR ! - In the end my OS did my TKR 4 weeks ago and so far so good.

So - in view of what you have posted I am sooo pleased that I took the time etc to get my OS to go with my decision.

My OS told me that arthrodesis was permanent and not reversable - now I would be inclined to go and see the man that has been reccommended to you to see if he has actually changed any fusions into tkr- and then to meet with the patients to see how it has worked out really it is only then that you can decide whether you can go in the same direction. If he has not done one and is willing then you have to decide if it is worth the risk - there has always got to be a 'first person' - and if it failed could it be fused again?

Do you still have usefull muscles in your leg - I don't know what state they would be in after all these years?

As for amputation - this is something that only YOU can make a decision on (if you found a willing surgeon) I don't think I would be brave enough as ther would always be that 'what if' - maybe they can do a TKR in the not too distant future - medical knowledge moves so quickly.

I find this a very interesting case and would appreciate you posting your progress (Hope I didn't come across as waffling on!)
Wishing you the very best
anja

1978 - ruptured acl and all cartalidge removed.
several debridements over years
TKR 10TH JULY 2006 http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=28257.0  Aug 07 patellar maltracking - more physio! Still pain - but so much better !
BIOMET AGC  TKR  (with 10 yr warranty !)

Offline Kneemo

  • MINIgeek (20-50 posts)
  • **
  • Posts: 34
  • Liked: 0
Re: total knee replacement verses total leg replacement
« Reply #2 on: August 11, 2006, 12:14:20 PM »
Thank you Anja for your reply, I am so happy to here that you didn't make the decision to have an Arthrodesis.  Haveing this done to my leg, is like being in permanant bondage, I cannot walk properly, sit comfortable, lay down in the usual fetal position (which causes huge strain on the back).  I have to do stairs one at a time (and I am a very active person, so this is incredibly frustrating), I cannot crouch down or kneel, so the 1000 times a day I need to pick something up from the floor, mean bending the way we are taught not too, which has messed up my back (that and the fact that I continued my work as a lead worker on the roofs and took up martial arts).  My most frustrating experience was to watch a woman get mugged 20 yards away and fall flet on my face when I forgot I couldn't run! (I had to get in my car and chase him around london).  With an Arthrodesis you do not feel like you are unable to bend your leg and every day is a psycological battle (especially when you are a 26 year old man).  Arthrodesis of the knee should be an option for old people, and as I have said I am so glad to here that you turned it down.  Good luck with your new knee and I wish you all the best for the future.  Sorry to sound a bit bitter about this, but its not very often I feel comfortable enough to offload the way I feel about it.

Many thanks, Kneedeep
Ruptured ligaments R/K including 4 arthroscopies leading to arthritis (1982)
Shattered tibial plateau including 18 assorted operations leading to Arthrodesis (fusion) of the left Knee. Now awaiting possible amputation.
Prolapsed disc's L4 and L5 now fused and scaffolded with nuts and bolts.

Offline UK Girl !

  • SuperKNEEgeek
  • *****
  • *
  • *
  • Posts: 5992
  • Liked: 1
Re: total knee replacement verses total leg replacement
« Reply #3 on: August 11, 2006, 12:40:54 PM »
Hi kneedeep

My god, so by my reckoning you were about 9 when you had this done - why?

After reading your reply I am so glad I did not do it.
anja
1978 - ruptured acl and all cartalidge removed.
several debridements over years
TKR 10TH JULY 2006 http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=28257.0  Aug 07 patellar maltracking - more physio! Still pain - but so much better !
BIOMET AGC  TKR  (with 10 yr warranty !)

Offline Linds

  • SuperKNEEgeek
  • *****
  • *
  • Posts: 4097
  • Liked: 3
  • worry about what you can change!
    • Linney and Kitty's Website
Re: total knee replacement verses total leg replacement
« Reply #4 on: August 11, 2006, 12:56:21 PM »
Oh my, I cannot imagine. I have the same question as Anja... why did they do this to you when you were so young?  I am 26.. well will be in a few weeks.. and while my knees are far from perfect.. I cannot imagine... having a fused knee joint at this point in my life. :(  I think you should go see that surgeon that was recomended to you, and see what he can offer you.  But Anja is right a decision like having your leg amuptated can only be made by you , weighing heavily on the pros and cons.. for you. It might be the right decision, but you need to decide for sure.

GOODLUCK!

I'll be rooting for ya!

Linney
1997 Scope RK
2002 LR RK
2002 Scope and hematoma evac RK
2004 LR LK
May 06 Fall from Horse, partial ACL tear and meniscus injury, Tibial plateau injury
2007 Scope, Plica Excision and Debride LK
2009/2010- Possibly Ankylosing Spondylitis?

Offline Kneemo

  • MINIgeek (20-50 posts)
  • **
  • Posts: 34
  • Liked: 0
Re: total knee replacement verses total leg replacement
« Reply #5 on: August 11, 2006, 01:09:39 PM »
Sorry I seem to have misled you where my age is concerned, I am actually 40 years old and had this done to my knee when I was 23.  I wasn't trying to make myself sound younger, Honestly!

Kneedeep.
Ruptured ligaments R/K including 4 arthroscopies leading to arthritis (1982)
Shattered tibial plateau including 18 assorted operations leading to Arthrodesis (fusion) of the left Knee. Now awaiting possible amputation.
Prolapsed disc's L4 and L5 now fused and scaffolded with nuts and bolts.

Offline UK Girl !

  • SuperKNEEgeek
  • *****
  • *
  • *
  • Posts: 5992
  • Liked: 1
Re: total knee replacement verses total leg replacement
« Reply #6 on: August 11, 2006, 02:20:23 PM »
lLOL

Hey that is still so young for such a drastic opeation.

really hope that you can find a way to have it changed

keep in touch - even if you can't this is a great site to be on even if you just want to rant and shout about your frustration, pain whatever.....

take care
anja
1978 - ruptured acl and all cartalidge removed.
several debridements over years
TKR 10TH JULY 2006 http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=28257.0  Aug 07 patellar maltracking - more physio! Still pain - but so much better !
BIOMET AGC  TKR  (with 10 yr warranty !)

knee deep in Goo

  • Guest
Re: total knee replacement verses total leg replacement
« Reply #7 on: August 12, 2006, 12:22:17 AM »
HI Knee Deep

Brillant minds pick the same screen nicknames I say.  I got your IM and no worries.  I am trying to remember I thought I saw another poster with a fused knee.  It could be you .. I remember something about the airforce and someone saying in years there would be medical advancements to correct a fused knee and how they may or may not have regretted doing the fusion.  I know big help I am being here.

I had the experience of going to prostestis maker  for amputees while getting my unloader brace made.

I am 36 and I will have a tkr soon. Very soon.  I feel like I hop around all the time.  So i can understand all the stresses your body is under with a fused knee.   Now you have to put up with a nick name that is close to mine .   I guess other posters will have to call me goo or annie.

Offline UK Girl !

  • SuperKNEEgeek
  • *****
  • *
  • *
  • Posts: 5992
  • Liked: 1
Re: total knee replacement verses total leg replacement
« Reply #8 on: August 12, 2006, 05:54:26 AM »
hey Gooey annie and knee deep - have to say when I fisrt saw this new thread I had to go and check the profiles, but soon realised you weren't one and the same - how strange picking such similar names.

1978 - ruptured acl and all cartalidge removed.
several debridements over years
TKR 10TH JULY 2006 http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=28257.0  Aug 07 patellar maltracking - more physio! Still pain - but so much better !
BIOMET AGC  TKR  (with 10 yr warranty !)

Offline Kneemo

  • MINIgeek (20-50 posts)
  • **
  • Posts: 34
  • Liked: 0
Re: total knee replacement verses total leg replacement
« Reply #9 on: August 12, 2006, 11:12:37 AM »
yes, great minds think alike, except its not exactly "goo" I felt Knee deep in, well I suppose it was actually.  I will change my name now to Kneedelp, which is probably more suited to me.

Have a nice day all, and remember pain and laughter are two opposites and its very hard for them to exist at the same time.  Next time you are in pain, find something that makes you really laugh and if it works like it does for me, your pain will be less.

Much Love Kneedelp XX
Ruptured ligaments R/K including 4 arthroscopies leading to arthritis (1982)
Shattered tibial plateau including 18 assorted operations leading to Arthrodesis (fusion) of the left Knee. Now awaiting possible amputation.
Prolapsed disc's L4 and L5 now fused and scaffolded with nuts and bolts.

Offline Leentje

  • SuperKNEEgeek
  • *****
  • Posts: 2114
  • Liked: 2
  • ER nursing rules !!!
Re: total knee replacement verses total leg replacement
« Reply #10 on: August 12, 2006, 12:03:21 PM »
Hey!

First of all you have my sympathy and empathy! I can't imagine living with a knee fusion and would never recommend this to anyone, knowing what it does and what problems it can leave you with. I've seen no-one happy after a knee fusion (I am in the medical field, first on ortho now on ER).

Secondly, as you experienced, not much drs want to "touch" a fused knee. They can do something about it, but you'll never have a good knee. And it scares them that you'l (or any kneefusion patient) will put the blame on the OS who touches the knee.
However after a knee fusion you can have a TKR, it is possible but know you'll never have great function! Your knee will function again, most likely your leg will be shorter (you can solve that with soles or something else) but it can be done.

I would opt for having the TKR. But it won't be easy... If it doesn't get your leg better you can have it amputated, yes, and you can live perfectly normal with an amputated leg and a prosthesis. But it will leave you with pain (phantom pain) and that's nothing to consider lightly!

This is my opinion, think this through very carefully and be sure you trust your OS, feel comfortable with him. If he's willing to touch you he'll most likely be good... But he can't do wonders!

Good luck!!

Helena
Bilat patellar malalignment/PFdysplasia
00/06/83 L wrist #
11/12/00 L knee LR + chondroplasty
21/08/02 L knee TTT
02/03/04 L knee stretched PCL
11/09/07 L ankle dislocation/medial avulsion #
25/05/09 L ankle medial avulsion # AGAIN!
05/06/13 R ankle dislocation

Offline Kneemo

  • MINIgeek (20-50 posts)
  • **
  • Posts: 34
  • Liked: 0
Re: total knee replacement verses total leg replacement
« Reply #11 on: August 12, 2006, 02:57:07 PM »
Thank you Helena for your thoughts, I realise I will have to do a lot of research, to see for myself and compare TKR to a Prosthesis.  So far all the pro's and con's seem to weigh in favour of a prosthesis, which is why I am researching, because there's no going back.  But I want to get on with my life and part of that is my 7 children and 3 grandchildren, 5 of which are boys under 10yrs and there are a lot of things I would like to do with them, which will require a knee joint with at least 90 degree flexion, or one that causes me no pain if I break it.  If I am unable to crouch or kneel, I will have to resort to a much less active life and that would leave me frustrated.  I have met people before with above knee amputations, during my 20 odd stays in hospital and most of them had minor injurys from the active sports they were doing (rock climing, skiing,and falling over running a race!).  I have no fear of amputatioin and as a Five Element Acupunctuist, I am constantly evalluating my emotional state and know I can cope well.  I dont understand phantom limb pain exactly, I have met amputees with it and some without, I have no pain now so will I nescesarily have this problem?
Sorry to go on, but chatting to people like yourself is helping me very much to weigh up the pro's and con's.

Much Love  Craig (kneedeep)
Ruptured ligaments R/K including 4 arthroscopies leading to arthritis (1982)
Shattered tibial plateau including 18 assorted operations leading to Arthrodesis (fusion) of the left Knee. Now awaiting possible amputation.
Prolapsed disc's L4 and L5 now fused and scaffolded with nuts and bolts.

Offline Leentje

  • SuperKNEEgeek
  • *****
  • Posts: 2114
  • Liked: 2
  • ER nursing rules !!!
Re: total knee replacement verses total leg replacement
« Reply #12 on: August 13, 2006, 12:42:44 PM »
Hi Craig!

About the panthom pain... most amputees have it. It goes from mild continuous pain to really bad unbearable pain, like when your knee is still there and really painfull. Mostly they feel pain in the joint that was painfull before the amputation. It is not said you'll have it, but the chances are big.

Not wanting to discourage you, but I have been working on ortho/vascular surgery for years, have seen many amputees there and don't know of anyone directly who didn't have it....

Of course you can lead a normal life post amputation, as in with a prosthesis.

Good luck deciding!

Helena
Bilat patellar malalignment/PFdysplasia
00/06/83 L wrist #
11/12/00 L knee LR + chondroplasty
21/08/02 L knee TTT
02/03/04 L knee stretched PCL
11/09/07 L ankle dislocation/medial avulsion #
25/05/09 L ankle medial avulsion # AGAIN!
05/06/13 R ankle dislocation

Offline UK Girl !

  • SuperKNEEgeek
  • *****
  • *
  • *
  • Posts: 5992
  • Liked: 1
Re: total knee replacement verses total leg replacement
« Reply #13 on: August 13, 2006, 03:15:24 PM »
Hi Craig

It is really worrying me that you are considering amputation.

I have a friend who had amputation just below the knee - not only has she never found a prosthesis that is comfortable but she has constant phantom pain.  The other thing is and this is going to sound awful - but she is also very upset and depressed at seeing the actual stump which twitches the whole time.  This has quite devasteated her life - and she is permanently in a wheel chair now.

I am sure that this is not the case for everyone who has to resort to amputation.

BUT - it is so FINAL -  Please do not think it might be the best way out - please try everything else first including a TKR if you can get it.

you really worry me.
take care
anja
1978 - ruptured acl and all cartalidge removed.
several debridements over years
TKR 10TH JULY 2006 http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=28257.0  Aug 07 patellar maltracking - more physio! Still pain - but so much better !
BIOMET AGC  TKR  (with 10 yr warranty !)

Offline Kneemo

  • MINIgeek (20-50 posts)
  • **
  • Posts: 34
  • Liked: 0
Re: total knee replacement verses total leg replacement
« Reply #14 on: August 13, 2006, 05:44:00 PM »
Thank you anja for your concern, I do understand the risks that I will be taking If I decide to go through with amputation and it will not be a decision I will take lightly.  But if I dont do something about my leg, my spine, which is already damaged because of my leg, will get worse, as my every day tasks such as walking,sleeping,stairs and just about everything I do, is putting a real strain on it.  This could mean I will end up in a wheel chair anyway.  If I am unable to find a prosthesis that fits, lots of my every day tasks will still be easier, sleeping and sitting for example, and excuse my language but I'm s**t hot on a pair of crutches.  My right knee isnt badly damaged yet, but does cause me problems due to the work it has to do, and I am often unable to put my full body weight through it and I'm sure you can Imagine how awkward that can make life, especially standing up or sitting down.  I am a very well known for my ability to cope with pain, as you can see I cope with a lot of it anyway (as I'm sure most of us do on this site).  But the pain I have is mostly due to my arthrodesis and would be much less without it and if I'm honest I would rather have pain in my leg than in my back.  I am not considering this out of desparation from past troubles,  but more with a view to a slightly better and more active future.  I have been researching artificial limbs for some time now and I have seen people that have given up and others that embrace the challange prosthesis brings with it, running marathons and hiking through the jungles of Nicaragua.  I am not used to writing and I may come across as desperate and sad about my situation, but I'm not, I am a very happy man, I love life and every thing it throws at me.
Thank you for careing, much love Craig (kneedeep 2) :)   
Ruptured ligaments R/K including 4 arthroscopies leading to arthritis (1982)
Shattered tibial plateau including 18 assorted operations leading to Arthrodesis (fusion) of the left Knee. Now awaiting possible amputation.
Prolapsed disc's L4 and L5 now fused and scaffolded with nuts and bolts.















support