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APC 08-31-2009 05:43 PM

Below Knee Amputation
 
Looking for advice from anyone with below knee amputation.

I'm 28 yrs old male with several problems with my legs.
- Left Leg (thigh) I have a metal rod holding it together
- Right Leg (shin) broke tibia right below-knee, now knee is really bad
- Right foot unwalkable

Rather than keeping a foot I can't use, I would prefer to amputate below the knee. Doctor feels my pain, but needs me to get a second opinion saying amputation is ok, before he will do it. So I'm waiting on that now...

With BelowKnee amputation:
- Do you have extra pain in your hips and knees?
- how is your lifestyle affected by it?
- can you walk on grass/sand/hills,etc...?
- can you ride bikes, go snowboards, swimming(beach)?
- do you need different legs in order to do all these?
- can you get wet?

I'm just trying to prepare myself and 3 kids on what life will be after this operation. Thanks a lot!

aed2113 09-01-2009 07:45 PM

Re: Below Knee Amputation
 
I would find a prosthetist in your area, like the person who would actually be making your prosthetic if you have the surgery and ask that person all of your questions because I'm sure they have seen all kinds of results and would be able to help you better visualize what the process and future life would be like. Saying that there are olympic athletes that have prosthetics and I know every year during the iron man you see the couple of people who do all three parts of the course, so there are options.

APC 09-02-2009 08:55 AM

Re: Below Knee Amputation
 
Thanks for the advice.

If there are any people with an actual below-knee amputation, I would love to hear from you. My research has found that a lot of people do quite well after the surgery, but after 5 years or so, it starts to get really hard.

Please let me know your experiences. I really want to do the best thing for my kids.

Thanks!

indyjones 09-02-2009 12:32 PM

Re: Below Knee Amputation
 
One high profile guy I know is Malcom Daly, a rock climbing and mountaineer who lost his lower leg to a mountaineering accident in Alaska. As I recall he decided for amputation after his ankle fusion failed. He still climbs and a really nice guy. You could try and contact him by by googling these terms

mountainproject malcolm daly

Chook84 12-28-2009 01:10 AM

Re: Below Knee Amputation
 
My 20yr old sister has her left leg amputated just below the knee, due to a car accident 6mths ago. She is currently learning to use her 1st (of many) prosthetic legs. She as progressed well from being confined to her wheelchair, to using the crutches more often. Without the prosthetic, and with the use of the crutches, she has been able to walk (not completely without some hassels) on grass, sand, hills (small to start with) and she is able to get her leg wet (ONLY when completely healed) at the beach or river. From some of the people i have spoken to with prosthetics, life will eventually becme normal again, as you learn new ways to deal with things. I have a 3yr old son, and she has a 3yr old semi-step-son who are both very interested in the leg, accident and what is to com, neither of them have been effected by this in anyway, so i think it is a good idea to keep your kids involved every step of the way so if you do decide to go ahead with the op, it wont come as such a shock. As expected with the lack of movement, weight gain is enevitable, and i do know this has posed a few problems with my sister in walking for long distances and back pain, although, once moving again, she should start to loose some weight slowly. As expected, my sister has had her emotional ups and downs, but i feel that with the support she has from all of our family, life will eventually resume to normal for her, as im sure it would for you and your family.. I hope this has helped you and would be more then happy to assist with any other questions you may have in the future.. :)

Sputs 06-23-2010 03:08 PM

Re: Below Knee Amputation
 
Have you gotten any of your questions answered? I am a 51 year old male that has been an below the knee for 40 years and would love to answer your questions if you still have some? My name is Kenny.

APC 06-23-2010 10:24 PM

Re: Below Knee Amputation
 
[QUOTE=Sputs;4272179]Have you gotten any of your questions answered? I am a 51 year old male that has been an below the knee for 40 years and would love to answer your questions if you still have some? My name is Kenny.[/QUOTE]

---------------------\\


Thanks Kenny! I am still desperate for answers. All signs point to me getting my right leg amputated below knee, but I might need a knee replacement as well. I see amputees running down the hall at physio after only 2 months. Because of my chronic pain, doctors are scared my pain will get worse... but I know I'm a fighter and would go through the pain with the joys of being able to walk/run again. Mentally I am very prepared for it. I'm just still having trouble convincing 2nd opinion doctors to agree to amputation, that my leg is useless and not just a blood-supplied-limb... but they just keep passing me on to the next doctor. Somehow, me being in a wheelchair, dropping in health, unable to walk, in so much pain, is better to them, than getting a new leg. Frustrating....
But being 30, family, 3 kids, active, love the beach, vacationing, nature stuff... any problems with walking on grass/sand/hills/etc, riding bike, getting wet, going swimming... how often do you need a replacement leg? new fittings? how often are you using wheelchair/crutches/cane/etc... what are your pains like? what are your overall top 3 bad things you go through with your condition?

Sputs 06-24-2010 01:38 PM

Re: Below Knee Amputation
 
[QUOTE=APC;4272389]---------------------\\


Thanks Kenny! I am still desperate for answers. All signs point to me getting my right leg amputated below knee, but I might need a knee replacement as well. I see amputees running down the hall at physio after only 2 months. Because of my chronic pain, doctors are scared my pain will get worse... but I know I'm a fighter and would go through the pain with the joys of being able to walk/run again. Mentally I am very prepared for it. I'm just still having trouble convincing 2nd opinion doctors to agree to amputation, that my leg is useless and not just a blood-supplied-limb... but they just keep passing me on to the next doctor. Somehow, me being in a wheelchair, dropping in health, unable to walk, in so much pain, is better to them, than getting a new leg. Frustrating....
But being 30, family, 3 kids, active, love the beach, vacationing, nature stuff... any problems with walking on grass/sand/hills/etc, riding bike, getting wet, going swimming... how often do you need a replacement leg? new fittings? how often are you using wheelchair/crutches/cane/etc... what are your pains like? what are your overall top 3 bad things you go through with your condition?[/QUOTE]

Sputs 06-24-2010 01:59 PM

Re: Below Knee Amputation
 
I very rarely have any pain. I can really do most anything I want. I hunt and use a climber to climb trees, work, play, shoot pool, ect..... Have never used a wheel chair and most never use crutches! The way i approached being an amputee is that it simply became a part of me. Your a young man and should do fine. I've always said that i would not be handicapped by my loss. To me it was more mental than physical and I was very young so the mental part never became an issue. The physical part took about a year and I have never slowed down. I lost mine in a farming accident and later farmed rice for 5 years after i married. I've raised three boys and have 7 grandchildren. Worked two jobs most of my life. I am fitted approx every 4 years and the current leg i have now is built by a local place called Methodist Rehab & most of the components are from a company called Otto Bach. I am using a vacumm system called a Harmony. It has been a great addition to my life and really comfortable. Check them out they have a web site. If I may ask what kind of accident were you in? Hope this helps feel free at anytime to message me.

APC 06-24-2010 10:44 PM

Re: Below Knee Amputation
 
At 18, I fell 75 feet in a roofing accident, braking my right ankle, left thigh, and left wrist. This left me 52% disabled, but nobody at work knew I had an accident. I could do everything, but if I ran fast, I would do it with a limp... or end of day pains....
Fast forward 10 years, finsihed university, got married, 3 kids, nice job... figure I would get a motorcycle. Buy it off a family friend, get him to certify it and deliver it to my house with plates. Luckily I put the insurance on it. And I couldn't resist, so I took it for a ride around the block. 10 minutes later, on my way home, while making a right turn I came to a stop, and the bike just fell on my leg, crushing it.
Now my ankle is stuck in the tippy toe position and I can't put the weight through it. My tibia, where the plate and 16 screws are, hurts really bad... and my knee has no strength and grinds really bad everytime it moves.
I've been stuck like this for 2 years now. I can only walk on my left leg 100% of the time, and it's causing lots of problems to my left side. I've been through physio, pain mgmt center, all the meds... nothing is working.
I need Dr Johnny Lau, who's suppose to be the best in Toronto, to look past the blood-supplied limb... and give me what will give me the best lifestyle/freedom. Fusing the foot would take at least a year to recover from, then it would just end up causing more problems in other parts, resulting in more years of my life in physio.... ankle replacement, i was told I'm too young for, but maybe technology will change in 10 years... but still, that's more guaranteed surgeries and years in physio. Amputation is the easiest thing, will give me my freedom, will give me my lifestyle back, let me be a father/husband again, and save me from more years of my life in hospitals.
Sounds simple to me... I just got to get the doctor to see it that way...

Your history helps me prove how my life will be better as an amputee.

Sputs 06-25-2010 07:31 AM

Re: Below Knee Amputation
 
Good luck to you! I know being in pain cannot be a good thing - that really has to put a burden on you and your family. If you cannot use your foot and surgery will not correct the problem - I don't know why you doctors would not listen to you? The dad of a friend of mine hit a bridge bannister with his bike and suffered for about 10 years with a foot that would not heel completely and after he seen how well i got along he decided to have his taken off two years ago and is doing great and pain free thank God!!

Good luck again! I will keep you in my thoughts and prayers!!!

Kenny

APC 06-25-2010 10:23 PM

Re: Below Knee Amputation
 
Just a few more questions if you don't mind...

Can you list anything negative you can think of that affects you... at home, outdoors, on vacation, etc... I'm trying to find out what the worst part is? Is it the phantom pain?

You said you got fittings every few years, so does that mean you need a new leg every few years. I'm from canada so not sure where you're from, but I'm assuming OHIP will pay 100% of the bill? or can I expect a large bill every few years from now on?

I'm looking forward to doing all the dad things again, and can I do that all on one leg (run, kick a ball, ride a bike, hopefully ski)... or would I need several legs in order to enjoy several activities?

Rawben 02-18-2011 12:51 PM

Re: Below Knee Amputation
 
APC,

Hi, where are you at today? It's been a little over six months since you last posted. My Grandmother was a below the knee amputee and now my Sister-in-Law's brother (around age 24 now) is one too. He was in a bune buggy accident and they tried to save the leg and he was always in pain! Now, after the amputation, he wished he would have done this from the beginning.

I need to ask my Mother, but there was an excellent suggestion that we received prior to my Grandmother's surgery. I'm guessing but I believe it was not to have the surgeon just "guess" or decide on where to amputate, but to talk with a prosthetic person on the individuals particular circumstances, etc. and decide together on where the amputation should take place. We were told it can make a difference down the road with comfort, etc. with the prosthetic.

Honestly, in reading your post, you know yourself best. Mentally your set and that can be the hardest part. Have you found any amputee support groups on Canada? If not, you may check with the Amputee Coalition (I've attended their conference with my Grandmother) or the American Amputee Foundation. I didn't see a Canada support group on their site, but if you email them, maybe they can referral you to resources in Canada.

Good luck and keep us posted!

PS: I did find a resource in Canada if you haven't found them. They are the Amputee and Disability Resource Directory for Canadian Amputees. Maybe a place to start. ;)

ninamarc 03-25-2011 02:54 PM

Re: Below Knee Amputation
 
This is a big decision. Amputation may not cure the situation or stop pain. Some people get phantom pain forever or for a long time. Some people get into trouble with the spine after they ampuate the leg below knees. The bones structure needs to have complete skeleton, or one would get into more physical problems later on. But not everyone gets so bad. I know someone who is in contant problems after the amputation. The pain didn't stop although the reason for the amputation is to stop the sharp pain. She got different pain and etc....

The amputation may not get what you want. So be cautious about that. If you cannot stand the current state, you may need to do it.

Take care,
NM

ClaudiaJane 04-15-2011 03:50 PM

Re: Below Knee Amputation
 
You haven't posted in a couple of years. Did you get the BTK amputation? I wish you well in everything you do.
ClaudiaJane

ClaudiaJane 04-15-2011 03:53 PM

Re: Below Knee Amputation
 
Thanks for your words of encouragement. They have helped me more than you know!
Claudia

APC 04-15-2011 11:43 PM

Re: Below Knee Amputation
 
[QUOTE=ClaudiaJane;4731671]You haven't posted in a couple of years. Did you get the BTK amputation? I wish you well in everything you do.
ClaudiaJane[/QUOTE]

I'm 30 now and unfortunately not much has changed since my accident July 2008. I still have lots of pain and require lots of meds, but still can't put weight on my right foot. I waited a year and a half to finally get an appointment with my 2nd opinion dr. My original dr said amputation might be right for me, but wanted the expert opinion first. When I first met the 2nd dr, of course he didn't know anything about me and expressed the same concerns about amputation. I gave him all my reasoning, how we've tried everything and that this would give me the best lifestyle for myself and family. He was empathetic with me and asked me to gather all the data/images and if we've really tried everything he would do the surgery... of course I was happy and did all that... but my mistake was letting a person from the Pain Program I was attending at the same hospital come to the dr appt with me. She said she wanted to be there for encouragement, and I thought that was nice... but the day of the appt, she said she came early and talked to the dr for a while... which was weird, but I didn't say anything.... and then when the dr finally came to see me/us, he wasn't interested in any images or reports I had, and basically just told me to 'try harder'. I told him what an insult that was, after everything I've done in the prior 2.5 yrs, but he didn't want to hear nothing. He just said I could come back only once some dr I've never met (who heads up the Pain Program) refers me back to him. 2 weeks later, the pain clinic just told me it was my last day... that this program wasn't working for me... and that was it... no more treatment and lost my expert 2nd opinion dr...
Now I'm attending a different pain program. We tried custom shoes and AFO brace, but that was too painful to wear. So now they want to try a spinal cord stimulator which would be implanted onto my spin to basically block the pain signals from going to the brain. I asked if I did this, would that finally prove that this pain is not nerve related and simply bone/physical pain... but they said no.. it would just prove that this treatment didn't work... This is now a 8 month waiting list that I'm currently waiting for....
In the mean time, they want me to do a 4 day admittion into the hospital where I would take all my regular meds, but then they would give me various other meds, including plasebo, and videotape my reactions...
I never want to say no to these people, but some of these things are too much.. I've reduced my meds all I can, but I don't see how anything will change unless amputation is done.
Problem there is that I finally met with a knee dr (I waited that year and half to see that expert 2nd opinion dr, hoping for all the answers... and first thing he said was I only do feet), and because of the spiral fracture of tibia up into knee, I have a really bad/weak knee. He said he would normally just do a knee replacement for this but because of my age, he can't. In seniors, they can last 20 years... but in my age, they would last 3-5 years... and after 2 or 3, I would have to get an aboveknee amputation. He also said that a knee replacement wouldn't be able to handle a below knee amputation.
So my dreams of a below-knee has now turned into an above-knee amputation.... and I must say I'm a little more nurvous about that. I think it would be a lot harder with AKA, and I'm not sure if I could do all the same things as a BKA.
Does anyone have an answer on that? What would the biggest problems/cons be with an AKA? My alternative is a life in a wheelchair, right leg unusable, and left leg very weak. All the meds keep me from working and that's it... this would be my life, while my kids grow up without a real dad being there. Yes I have a power wheelchair, they are buying me a wheelchair van, modifying my home... trying to make it as easy as possible for me, but I don't like being stuck sitting. I think if I had the AKA, I wouldn't need all those things and I could walk/run around with my kids...

Please let me know about you... I appreciate hearing from other people. We all have our issues and it's nice sometimes to not be alone.

ClaudiaJane 04-16-2011 06:52 PM

Re: Below Knee Amputation
 
APC, My heart goes out to you with your present situation. You certainly have had to learn some very hard lessons in patience and dealing with pain.

I think that woman from the pain group who spoke to YOUR second opinion doctor before you even had a chance to -- was totally out of line, and what she did must certainly be unethical. But I guess by now you must feel that way too.

Sometimes it just helps to know there are many of us out there in similar situations, some better off and some even worse. I feel lucky that I'm only facing possible BK and not AK. I had a simple arthroscopic knee repair a few years ago and it was nothing like needing a replacement.

But try to take a note of courage from so many who have dealt with AK successfully. You are too young to remember Max Cleland, former head of Veterans Affairs, who was a double AK amputee. He was an inspiration to so many. I was acquainted with him in Atlanta, GA when I lived there.

When my pain was at its worst I'd try to remember the soldiers throughout history who dealt with battlefield amputations without even an anesthetic. My blood runs cold just to think of it

It doesnt help the pain and discouragement to know how much WORSE off others are, though. Sure, there are paralyzed people, quadriplegics, etc. but it just makes ME feel inadequate that I'm such a sissy by comparison :-/

Are you a U.S. resident? I can't help but wonder about health care and the cost of all this delay. I know in the U.K. it is quite a different story than here... as I have learned from the external fixator support forum. I hope you have good medical coverage, at any rate.

Wish I had something more constructive to say other than, "hang in there."
Claudia

ClaudiaJane 04-16-2011 06:55 PM

Re: Below Knee Amputation
 
Now I see (after the fact) that you are in Canada. That's good, at least you have expenses covered and arent worried about that too. I also must try to change my mood, because I am definitely NOT cheerful tonight.

A Huter 10-02-2011 06:08 PM

Re: Below Knee Amputation
 
hello Apc....haven't had my leg but for about 5 months and my dr. said yes i could get it wet can get in pool.I have just started my therapy.I am looking for the answer on how to walk up steep hill so I can rake it.I was down in wheel chair for 3 years ....had complete knee replacement and foot dr. said he could get do surgery on right foot and make better but of course it wasn't meant to be.So after 5 surgeries on right leg finally got amputated and best thing I could have done.Can't keep me down now.Still problem with knowing how to address steep hills. I Love yard work but can't do much at a time have to wait to get endurance back.Wish you all the luck in the world


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