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Author Topic: Arthrodesis vs Amputation  (Read 5181 times)

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SL99

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Arthrodesis vs Amputation
« on: August 24, 2003, 04:20:28 AM »
As most of you know, due to complications with my overall connective tissue disorder the rare deformity in my left leg simply can't be addressed as the amount of reconstruction required would be too dangerous and unpredictable with my unusual progressive disease. As a result when my pain and instability become too much to cope with (a rapidly approaching reality) I am facing a choice between full knee fusion (arthrodesis) and above knee amputation.

Obviously both options are very scary and not to be made lightly. Currently I am having to wear a full leg cylinder cast to keep my leg rigid mainly at night, but also during the day at the moment following a recent fall. This is giving me quite a worrying feel for how a fusion would affect me and how I would cope with it. The scary truth is that I don't think I could mentally or physically as I am struggling to function with a rigid leg and find that the strain is causing my hip and ankle to sublux/dislocate more. That may be the main deciding factor in my eventual choice actually as the instability in my other joints and the underlying deformity in my leg bones may rule the fusion out anyway.

Which leaves me with amputation. An equally scary proposition but strangely one I feel I could cope with easier than the arthrodesis as I genuinely believe my mobility and level of physical activity and mental sanity would be better. But it is a huge step to take and of course it is closing all of my option on future developments and advancements that could possibly benefit my situation later in my life. So I guess I really need to work out whether if it is an actual possibility, the restrictions of fusion would be worth taking and coping with in the chance of that ultimate development or miracle somewhere down the line or whether I bite the bullet, amputate and learn to live with my decision regardless of the future advancements.

That is why I'd really like to hear from anyone with experience of fusion or even amputation as I'd really value some information form people who have been there and understand this. As I'm finding it hard to cope with it all inside and can't really discuss it with anyone as my parents are being very supportive but are basically terrified of the situation and are going through the "if I change the subject or don't talk about it I can pretend it's not real" stage which is understandable but not overly helpful.

Thank you in advance for any advice or information you can offer - I really appreciate it.

Love and hugs....Jo
xxx

Offline Heather M.

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Re: Arthrodesis vs Amputation
« Reply #1 on: August 24, 2003, 07:55:26 AM »
Jo,

One thing to consider is the implications of having HMS and a prosthesis---if there are any.

We have a family friend whose ankle was crushed in a car accident.  He went through five years of reconstructive surgeries and pain, before he finally opted for amputation and a prosthesis--he says it's the best decision he ever made.  

Two things he mentioned:

1.  If the amputation is being done for pain reasons, people should be aware that sometimes the phantom pain lingers and feels exactly as it did before the amputation.

2.  The resulting stress on the rest of the limb from the prosthesis needs to be taken into account.

I know what you're going through, as I've been told there is nothing to be done for me but to 'live with it' and that even a TKR won't help because the problem is my kneecap.  I'm not ready to buy into that yet, but I have considered how much simpler things would be without this darned knee.  I just thought I'd bring up a few things that I know about amputation and prosthesis for your consideration.

In terms of mechanics and function, a prosthesis can often be the best choice, but if it's pain relief you may want to talk to the doctor about that.  Also, if your hips are hypermobile as well, what would be the implications of a prosthesis (or a fusion, for that matter).

I'm with you in spirit as you go through this internal debate.  I hope you find some answers that you can live with, and if you want to ask our family friend any questions about the decision to ampututate just let me know--okay?

Love and hugs.

Heather
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
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SL99

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Re: Arthrodesis vs Amputation
« Reply #2 on: August 26, 2003, 03:30:30 AM »
Hi Heather,

Thanks for your reply plus your advice and support, both are greatly appreciated.  :)

I'm sorry to hear about your friends amputation, but glad that it has worked out for him - sometimes it just is the best way to go physically and mentally I guess, and that's sort of what I'm trying to figure out now. You raised some very interesting and important issues for me to think over and of course research, especially the implications of a prosthesis with my Hypermobility and joint instability. I know that it would be made worse by a fusion, but I'd have to seriously look into whether the same would apply for a false leg too.

The issue of going through with the amputation over the fusion would be largely down to mobility - neither option is going to stop my pain much to be honest, so any surgery would be purely on a functional level - which is why I'm leaning more towards the amputation as I feel I'd be more functional and mobile with a movable prosthetic than a rigid leg. I just think of all the things that I could have a chance of still doing ( all be a slim chance) if I had the ability to bend my prosthetic over having a rigid leg... such as walking real distance, driving a normal car or even possibly riding again....

It's all just so confusing, and again I'm not even sure whether either option would be possible for me due to the other complications I have with my condition. Truth be known I think I'm more scared that they wouldn't fuse or amputate than I am of actually going through with either option - as I know that if I do nothing, I will progressively and rapidly loose complete function in my legs as well as having the constant pain.  I don't exactly relish the prospect of being confined to an electric wheelchair and requiring "help" with everything before I'm 30 years old.  :-/

I'm sorry that you are in a similar boat regarding the TKR Darl, it is so hard knowing the right time to make a decision let alone what decision to make isn't it? I hope that yours becomes easier and you ultimately get the best benefit from the choices you make.

Thank you again for your kind words and for shedding some logic on what is still a very raw and emotional situation for me. I also really appreciate the offer of talking to your friend regarding amputation, that is something I may just take you up on when I'm more able to cope with the prospect in my own mind.

Take care and know I'm thinking of you and here for you too.  :-*

Love and hugs.....Jo
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Offline Janet

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Re: Arthrodesis vs Amputation
« Reply #3 on: August 26, 2003, 05:48:10 AM »
Jo:

Just wanted to say how horrible it is for you to have to be making these kinds of decisions. I suppose you're right about the cast giving you a taste of what it would be like to have the fusion. And you definitely need to get lots of answers as to how either option would affect your other joints. Don't know how you'll make the decision in the end, but we'll be here to support whatever you decide.

Janet
Torn quad tendon repair & VMO advancement 4/99, MUA with LOA 10/99, Patella baja and arthrofibrosis, LR & medial release & LOA 5/01, LOA & chondroplasty 6/03,TKR on 11/06, MUA 12/06. From perfect knees to a TKR in 7 years, all from a fall on a wet floor...and early undiagnosed scar tissue.

Offline enuff81020

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Re: Arthrodesis vs Amputation
« Reply #4 on: August 26, 2003, 06:09:36 PM »
Hi Jo,

There is no way I can offer you any valuable advice--but I can suggest that you will know what to do based on your own feelings and experiences.

I'm disturbed about a lot of things that are being left for us to decide without a ot of support.  I'm not suggesting that I don't want to have say but on the other hand, it would be helpful if there was a way for them to give honest opinions that are exempt from letting them be sued,

Anyway, I am confident that you will get to the right decision.  I am so sorry that this big pile is on your plate.  Take care--and here's a hug to hold you over for now.  Sylvia
Both kneesOA.
Scope on rt knee,9/00;2/01
scope w/ LR and debridement rt knee 2/02
left knee same5/02
Patellar problems
LeftTKR12/16/02
Right TKR7/14/03
Complications MUA 8/14/03
R TKR revisio

Offline abaddon_bast

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Re: Arthrodesis vs Amputation
« Reply #5 on: August 27, 2003, 12:25:25 AM »
I can offer no good medical reson for eather or but i can give ya something to think about... take you age. and how long you have left in life and figure out how active you want to be . if you have kids or something you may want ot be more active.  With a fusison yoiu will have to get more funtire a handycap totie and more than likely no be able to drive again and not lead a good active life phyicaly but if  your not active noramly this won't be a big problems,  just gettign around would be you main troble there. now if you amputate ther is no cure for it but a protestis there are protesis out there that can act exaully like a real leg my uncel had both leg amuated due to war injurys, he had 2 protese and could walk with no leg and lead a fairly noraml life on thing he couldn;t do was swim good and he wasn;t the faster runner but he could if he had to.  he was also able to dive to with a modifted  turck.  

just think and you will do good best of luck and speedy recovery hope something i said helped you
Dislocated Right knee 2/28/03
Dislocated Right Knee 7/3/03
VMO adv. and LR w/scope on right knee on 7/21/03
Started PT on 7/30/03
Current ROM 130 as of 9/23/03
Curently in PT an doing good

Offline Ross

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Re: Arthrodesis vs Amputation
« Reply #6 on: August 27, 2003, 05:01:39 PM »
Jo, I'm by way of being an engineer, seems to me that swinging a prosthetic limb around would put a lot more stress on your poor overworked hip.  I tend to the idea that I came in kicking and screaming with a bunch of assorted limbs capable of different functions.  There will be a significant amount of kicking and screaming before I let any of the bits to which I am attached become separated!

Could I suggest that maybe a lot more research is called for?  The consequences are very final!

May God bless you and may His strength bear you up in this difficult time.
I'm a grumpy old bear with a busted knee.  The growling you hear is my tummy rumbling!