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Old 03-22-2005, 08:45 PM   #1
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Jenna Mac HB User
Below-the-Knee Amputation

Hi All,

Has anyone out there had a below-the-knee amputation due to an RSD-affected foot?

It is an option I'm discussing with my specialist now & I'm curious to know if anyone has had one & to what degree was it successful?

Also, how much time do you need to spend in hospital post-op & what is the recovery period before going back to work (a desk job)? If anyone had this done in Australia, was the op & prosthetic limb, physio etc all covered by Medicare?

Sorry... so many questions, but I'm looking for guidance & advice.

Thanks,

Jenna Mac

 
Old 03-22-2005, 10:24 PM   #2
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RSDtrinity HB User
Re: Below-the-Knee Amputation

The only thing that I know about amputation to an RSD affected limb is that it dosen't always work to relieve the pain. You end up having what they call ghost limb pain or phantom limb pain where the body perceives that the limb is still attached and painful. I have asked many many times for my b/f to cut off my leg because I feel that some days this would be a better option than trying to live with it, but he always laughs it off. You can check with the larger RSD sites about this, but I know that it isn't a very successful option to treating RSD affected areas. They used to use this on soldiers in WW2 to try and stop the burning pain, but it never really seemed to work for the wounded. I would definately think twice before considering it an option for dealing with your pain. - Jessica

 
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Old 03-23-2005, 01:40 AM   #3
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Re: Below-the-Knee Amputation

Thanks for your advice Jessica.

My Specialist has advised that the amputation won't lessen the pain at all & that pain management would still be an ongoing thing. The option of the amputation is being considered more so for giving me back mobility than anything else. My ankle is permanently in a 'locked position' at about a 90 degree angle, and is pretty much immobile - at least with the amputation I'd be able to walk much better than I can now, & who knows maybe I could even run again!

All the best & thanks again,

Jenna Mac....

 
Old 03-23-2005, 05:43 AM   #4
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Re: Below-the-Knee Amputation

Jenna,

Your story sounds similar to mine. i have had RSD for 3 years now and its in my rigth foot, and like yours mine is frozen and locked at an 90 degree angle aslo. i havent been able to wiggle my toes in about 3 years eithere and i can only walk or stand on the out side of my foot because the rest of the foot is up in the air. I havent met someone that also has the inversion of the foot so its cool that i met you but then again i wish we didnt have to meet this way, ya know. Do you live in Australia?? I have 2 stims implanted in me and they still dont wrk and my doc's running outof options, but he is suggesting Botox injections in to my foot. There is a pattient in his practice tht is doing this next week and if it helps her then i probably will do it also. Its only a 3 mos treatment and then you have to have it done again, but if it helps...?? I have also asked to have it cut off many many many times nad my doc said it wouldnt help me and that if i did ave to have it amputated then the RSD would still be there and would go to the stump site and i wouldnt be able to wear the prosthetic because it wold be to sensitive like my foot is now. But i have to say, because my foot is so bad and the osteoporosis is so bad that my doc did say that god for bid that i break something in my foot, that there would be no way to fix it or even heal or heal right, so it would have to come off. sooo.... ???? Ask your doc about the Botox and i will let you know next week when my doc calls me about how the other girl did. I konw how it feels to walk all funny and it is very difficult to walk with this. I can only make it through 1/2 a store and thats pushing myself.. I have pics , just wish i could show ya them...

Hope to talk to you soon!!


amber

 
Old 03-23-2005, 10:14 PM   #5
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Re: Below-the-Knee Amputation

Ahhh, I see.. Well, I guess it would probably help to get you more mobile with having your foot locked like that. I would just be leary because of having RSD in the first place, you wouldn't know how long it would take for your leg to heal over. I know even small scratches on my RSD leg take forever to heal up and would wonder what a huge area like that would take to finally get to the point where it's usable would be. I wish you luck in your decision, I know this won't be an easy one to make. I've been there though, thousands of times begging for someone to just cut it off to stop the pain, I just wish it would really stop the pain, because I'd lop it off in a minute!!!! He he he.. - Jessica

 
Old 03-24-2005, 12:50 AM   #6
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Re: Below-the-Knee Amputation

As others have said, when I was at my worst I joked about having the leg taken off, but read a lot about phantom pain and spread of RSD after surgery on an affected limb and do not even joke about it any more. Laura
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Laura

 
Old 03-25-2005, 12:02 AM   #7
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Jenna Mac HB User
Re: Below-the-Knee Amputation

Thanks Amber.... I'll certainly ask the Dr about the botox when I see him next.

 
Old 03-25-2005, 06:06 PM   #8
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Re: Below-the-Knee Amputation

Do they not have any sort of prosthesis that they could add on to your leg currently that would give you a more secure footing without amputation? I know you've probably already gone there, but i'd just be so worried with the amputation.... Just trying to come up with different options for you. I'm really excited that they are doing the Ketamine trials in the US now, I really think that this could help me (I don't have any deformaties at this point) and maybe it could help you two in getting back mobility to help you walk better?? Always something new coming out that we can hope for right? - Jessica

 
Old 03-27-2005, 12:47 AM   #9
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Jenna Mac HB User
Re: Below-the-Knee Amputation

Quote:
Originally Posted by RSDtrinity
Do they not have any sort of prosthesis that they could add on to your leg currently that would give you a more secure footing without amputation? I know you've probably already gone there, but i'd just be so worried with the amputation.... Just trying to come up with different options for you. I'm really excited that they are doing the Ketamine trials in the US now, I really think that this could help me (I don't have any deformaties at this point) and maybe it could help you two in getting back mobility to help you walk better?? Always something new coming out that we can hope for right? - Jessica
Hi Jessica,

I currently wear an Aircast Pneumatic Walker (if you're not sure what that is, just type the full name into a search page & you'll find out what it looks like). This provides me with stability (my ankle rolls outward, and I end up walking on the outside of my foot if I don't wear this), but it does nothing to assist me with mobility, nor does it reduce pain. Unfortunately although I was diagnosed within 3 months (this being 10 years ago), I wasn't put onto an appropriate treatment plan (be it through Dr ignorance or negligence - not sure which, though I suspect it is the latter) - and so for a number of years I was left floundering trying to cope with it as best I could. Drs just kept trying me on one drug after another - none of which have helped. Now, due to the amount of time that has passed, I've been told that blocks, ketamine infusions etc will do me no good at all & that there will come the time when I'm unable to walk on the foot at all, as muscle atrophy & osteoporosis/osteoarthritis are taking hold very aggressively. Although I know amputation won't reduce the pain, I've been told by the Dr it will help my mobility & in the long term I'll be better off than I am now or will likely to be if the foot stays on. To many peple, amputation seems a drastic measure, but honestly, if I had the means (and the guts) I'd lop the foot off myself!!!

Thanks,

Jenna Mac

 
Old 03-27-2005, 09:14 AM   #10
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Re: Below-the-Knee Amputation

Sounds like you've been at this for a while, and know that the decision is probably the best one for you. It's just one of those scary options. But after hearing the problems that you have it just might be the best option to give you back the mobility that you've lost because of the RSD. Good luck in whatever you choose though. I'm about to lop mine off today because even the stim isn't covering it all the way.. Grrr. - Jessica

 
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