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Guest SuzyQ

New to Group & Potential Amputee

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Guest SuzyQ

Hello Everyone!

My name is Louise Magno. I have joined your forum as I am in the decision making process right now about amputating my left leg. I am looking for answers, support, suggestions, and anything else that will help me decide and if I decide to amputate, then on-going support for getting on with my life.

My story: I am 48 years old with a left leg that won't bend any more and it is causing a lot of colleratal impact/damage to other body parts. How did I get here????

In the late 60's I ran track, fell tore up my left knee, and they put ice on it. It continued to worsen over the years, so in 1978, they did what they did to a lot of people, and they removed the lateral meniscus cartiledge. I did well for several years after that. In the 90's it began hurting again and swelling. I had arthoscopic surgeries. loads of PT, cortizone injection, & several braces to include the unloading brace. At this point, I was bone on bone (bone was chipping away and fragments were floating in joint), and the knee was colapsing. The knee was bowing in towards the other knee. The medial cartiledge was breaking down/distingrating. All of this meant lots of pain.

I was out of options, so in April 2003, they replaced the knee with a Zimmer Next Gen knee. Within 6 weeks of surgery a rash broke out, that the surgeon couldn't explain, there was lots of pain, swelling, redness, and heat coming off of the knee. Within 9 months, I had severe bone inflamation in both feet and the left leg. At 14 months post opt the rash covered the entire lower quad of the left knee and broke open and was constantly bleeding and oozing. No infection. The surgeon said some case just didn't heal well and I would just have to learn to live with it. I did my own checking/research and found that I had a sever metal allergy to some of the metal components in my knee. Still the surgeon would not help me, so I went to a revision specialist. He did his own tests and found that the first knee replacement had failed and I was rejecting it.

He gave me 3 options. I could fuse the knee, amputate the leg, or try another knee with different metal components. I opted for the 3rd option and they put in a Smith & Nephew Ceramic Knee. I still have some metal allergy with this knee, but not as bad as the first. I scar badly, and I have arthiofibrosis.

The knee at 14 months post opt is still badly swollen with some heat coming off of it. I can only bend the knee to 28 degrees after resting. If I have been up and about, then I have no bend in the knee. The damage from the first bad knee replacement was very extensive. The tibia bone was shot, so they replaced it with a titanium rod. Lost a key stabilizing ligament in the knee and had to have reconstructive surgery in the thigh. I continue to have a small minor metal allergy rash. The altered gait has caused an extreme case of bursitus in my left hip (very debilitating, requiring on-going injections). inflamation in the right foot, which has caused me to wear a walking cast for several months, and 2 discs in my back that are dissengrating. I am in severe pain not only in the knee, but in the other areas mentioned. I have to stay on lots of pain meds to take the edge of the pain. The surgeon has told me ( as have many others) that the left leg is shot. There isn't anything more they can do for it, so now they are trying to salvage the other body parts. They want me to spend most of my time in a wheel chair so as not to stress the other body parts.

I am not ready to stay in a wheel chair, so I keep walking until I can't stand the pain and then give in to the wheel chair. Given all of this, I went back to the revision specialist surgeon to talk options. Fusion is not an option any more, due to my metal allergies (& I didn't want that option any way!). The knee can't be replaced again as there just isn't any more knees out there for me to try and the damage in my body is so severe, there isn't enough to work with to try another knee. So that leaves me with live iwth things as is or consider amputation. I asked the Dr. what was so bad about it and he said the worst thing in my case would be could I deal with the loss of a limb, as an amputation would eliminate the knee pain, hopefully get me back to a more normal gait when I walk and hopefully eliminate the pain in the right foot and left hip.

He suggested I contact amputee support groups, prostetic makers, and a psyiatrist (pain management specialist). The psyiatrist just prescribed more pain meds and pushed the wheel chair option. I found a local amputee support group that meets monthly, so I attend their first meeting on 1/5/06. In the meantime they have 2 mentors in their group who have been specially trained (they must also be amputees to be a mentor) and they get assigned to people who are trying to make the decision or new amputees. I have been assigned a very nice lady who lost her right leg 8 years ago, so she has a lot of knowledge to share with me. I have only talked to her on the phone, but hope to meet her after the first of the year.

If I amputate my left leg, it will be an above the knee amputation. Does anyone have any adivce, suggestions, comments, anything???

I am trying to make the best decision I can based on all the facts and not just emotion. I would like to walk again, take easy hikes, ride my bike, garden, take my pictures (I like to take them from the ground many times for the perspective), and just plain get out of pain and stop taking all these pain meds around the clock just to survive.

I would greatly appreciate anyone's help! I am new to this and trying to learn what questions I should be asking.

Please help me. Thank YOu!!!

Louise Magno

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Hi Louise

Wow that’s some on going situation you have there. I’m a below knee of 5 months and getting on with my life again just fine. Having said that, I cannot comment on what life would be like for you as an above knee, but there are people here who can, and no doubt they will give you far more information in that respect than I ever could.

However, it sounds like you are out of options, the biggest issues that I can see, is that as a result of an amputation you have every chance of being pain free and doing the things you say you want to do. If it also takes stress off other joints, then it certainly sounds like you have a real possibility of improving your quality of life. Whilst I cannot offer practical AK support, I can well understand the emotional turmoil you are suffering, but please remember you are still a relatively young woman, and the thought of a better quality of life has to remain uppermost in your mind.

There are some wonderful people here who will give you all the help and support you could ever need. Keep us informed and let us know how you get on.

I wish you well.

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G'day Louise and welcome to the forum.

I'm a right below knee amp(RBK) and have been for 37 years.

If you want support and knowledge this is the place to be. We have some awesome people here and I'm sure you'll get what you need.

Cat

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Hi Louise;

Oh, MY! You've had so much to deal with, but you still sound able to look at it objectively, which is great. There is hope for a better quality of life, and you've definitely come to the right place.

I joined this forum less than a week ago, as I'm no longer able (or willing) to accept my wrecked right ankle, and since then I've received excellent support, encouragement, and advice from the members of this forum - but there is more here, too...

In pursuit of knowledge and information, I would recommend that you go to the start of the Introductions forum (the last page), and look for stories similar to your own - I did this, and found there were several forum members who'd been in very similar situations to myself, and I was able to follow their progress through decision-making, treatment, rehabilitation, prosthetic-fitting, refinement, and success story. It's been hugely encouraging to me to see apprehension and worry turn into relief, confidence, and ability, and I hope to travel exactly that road myself.

I know myself that it's very uncomfortable contemplating and even planning the demise of one's own body part, but knowledge really is power (and reassurance and relief), and you'll definietly find it in this forum. By following the paths of others, you'll see what kinds of questions come up, and the more you learn the more you'll know what to ask; it seems there are answers to things you couldn't imagine yet, but like me, in a few days, you'll be infinitely better-informed.

They're an amazing bunch here - I feel I've found a new family who will help me every inch of the way to an infinitely better future, and you'll find this too. Now that you're here, try to relax and just soak up the knowledge, and you'll have a confident new plan in no time!

Now - get comfy and let the enlightenment begin!

Very best wishes

Roz. :)

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Welcome Louise,

I too am a BK amputation, but I have no doubt you can get the help and support you need from this group of fine people. Good luck and best wishes to you.

Diane

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Hi Louise

I am Ally, right above knee amputee from South Africa. I lost my leg (really though, nobody told me what they did with it) in a car accident 10 years ago.

Terrible decision to make. People told me that if you are able to plan for an amputation, you are more equipped to deal with it. I'm not so sure.

You've done all the right things, it seems. Meeting with an amputee support group is fantastic for you. You will get SO much out of them. We are a very specialised bunch, us amputees. So if you get your info 'straight from the horses mouth', you will be getting the right stuff.

Welcome to our forum. Any questions you have, just post them. Guaranteed there's someone here who will give you the support and advice you need.

Kindest regards

Ally

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:rolleyes:

Hi Louise

I am AKA I had to make the decision to have a BK as all other treatment had not worked. Then I had to make the same decision after 28 day's to have a AKA.each time they left the decision to me I suppose that was to let me think I had control over it but there was only one decision I could make if I wanted to live.So if you are going to be better after the operation and you will. Then decide but it must be your decision and what you want for yourself AKA is not the end of the world as I have found out.Best of luck Louise.

Pat.

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I'm only BK so I can't give you much advice but don't discount the use of a wheelchair in the meantime while you make your decision and wait for a date for surgery. It should help ease the strain that you now putting on your back and hips and these are the very things you need to help in your rehab later.

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Hi Louise and welcome to the forum. It sounds like you are doing all the right things by seeking advice and help beforehand. I am BK so can't offer anything personally about AK but there are lots here who can. Take Muz' advice and use the wheelchair. Best of luck to you.

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Hi Louise. Welcome to the forum. I'm a rbk and made the decision 2 years ago. It was the result of a car accident that happened about 10 years ago. I know how tough it is to find the joy in life when you're in pain all the time. It sounds like you have a great attitude and are going to the right places for information.

I wish you good luck with the medical progress and please keep us updated on how things are going for you.

Take care.

Carol

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Guest SuzyQ

Thank you to all of you who responded. Muz made a good point that I should use the wheelchair for now to save the other body parts for use later. I have been so reluctant to do tht, as I have been trying to keep walking as long and as far as I can. Each day is more agony than the last day. I have taken so much pain medications and still here I sit @ 1:30 AM as I can't find a good position to lie down and get some sleep. I want to sleep through the night like a normal person so bad. It has been years since I could sleep and move in my sleep without horrid pain.

It also seems like maybe several other people got to make that decision to amputate from the responses I got. I didn't realize that a lot of people got to make that choice. I thought if you were an amputee, that it was something that just happened to you. I didn't realize for so many it was a choice. From those who responded, it sounds like it was a choice that worked out.

I don't doubt my ability to work hard in rehab. My worry/concern is that what if I have already done too much damage to the other body parts and they won't recover once I get a more normal gait in my walk. No one can tell me if I have crossed the line. That's part of the gamble in this decision and no crystal ball to look into to see the future... The other part of the gamble is the problem with my nerves. I have hypersensitive nerves. With all the operations they have done on my leg, they have me on Neurontin to control the nerve pain. Will I have lots of nerve pain from the amputation? Can someone tell me their experiences?

So here I am trying to make the decision. I go to my first amputee support group meeting on 1/5/06. They say their January meeting tends to be a small group after the holidays, but I am looking forward to it. They have also assigned me a mentor. This is someone in the group who is an amputee, who has been specially trained. The lady assigned to me is 10 years older and lost her right leg above the knee 8 years ago. She has called me a few times and is a really great lady. I look forward to meeting her in person around the middle of January. Our schedules didn't match through the holidays and now she is going in for more surgery (not related to the amputation) so she should be well enough in a couple weeks for a face to face meeting.

Anyway, I really appreciate all the responses and I will take the advice to look at other postings to see what I can learn from them as well. For now, I think I will try that lieing down thing again and see if I can get some sleep. I will keep everyone posted. I really believe in the power and support of support groups and I am very glad to have found everyone here. Thank you again and I will post again soon. I have to go out of town for a few days as my sister seems to have discovered she has breast cancer and it looks to be late stage. So I won't be on line for a few days while I see her. Should be back on line in a week.

Thank you everyone!

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Hi Louise,

I'm a RAK due to an accident. It wasn't a choice I had to make it was a decision to save me life so; very different from you're situation.

My left leg is also not too great but I manage to get around. I returned to my job as a sales rep 11 months after my accident, walk a fair bit a drive alot of miles.

I did have dreadful nerve pain after the operation but I also had a lot of other stuff going on too; how does one know at that point which pain is the worst.

When I got to rehab the nerve pain stood out above everything else and I tried a number of different things to forget about it, as I wanted to be off med's when I left.

Some days they drive me mad other days are not too bother some and or I have a better way of dealing with them.

Good luck with your decision Lousie.

Mel

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Hi Louise,

My story is very similar to yours, I had 25 years of trying to salvage my left leg, had 26 operations in total, including a few failed knee replacements and arthrodesis of the knee (fusion). I too suffer pain from wear and tear of both hips and remaining knee and spine.

I opted for AKA in April this year and although things have not been smooth sailing for me, ( I am about to have more taken off!): I do not regret my decision.

I am in less pain, although the pain in the other joints is still a problem it is not as intense. I need hip and knee replacements at some point.

Wearing a prosthesis is very strange and takes some getting used to, a good socket fit is dependent on lots of factors, and in some respects down to chance!

If your prosthetist is any good or not :D

The whole process takes time, patience and a lot of adjustments emotionally as well as physically.

It sounds like the decision has already been made for you by your body, you just have to get your mind to agree ;) I remember being in that position, it's very difficult.

You have come to the right place, these folks have helped a lot during my journey.

If you have any questions then ask away. feel free to PM me if you want to.

Be good to yourself.

Lynne

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Hi Louise

Welcome to this forum, you have alot to deal with, and I nor anyone else cant make the decision, but I think that if you had the option and amputated...you would be in a little pain. But not nearly as much as you have been in now. You would be able to walk and not have pain, its a positive, because I was in a lot of pain but could have just stayed in a wheelchair for life. It feels great to be walking again, and finally getting on with my life. I am a RBKA since may 28, 2003.

Just remember even if its a bad situation your in, life will bring you joy. I hope you know we are here whenever you need to talk.

Also a chatroom I am in: www.chatroom501.com

Lesley

p.s. I am 19 years old.

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Hi Louise, welcome to the forum. I am a RBK for just over a year. I also had to make the decision to amputate. You will get lots of good advice here from people who are above knee amputees. The hardest thing is making the decision, and only you can do that. I went around asking people what they would do in my position, but in the end it had to my decision only. My works doctor gave me a great piece of advice, he said that once I had made my decision, either way, I would feel a great weight had been lifted from my shoulders, he was quite right, it brought peace of mind and must be the best piece of advice I have ever received.

I joined this forum when I had already made my decision, but the help and advice I received has been overwhelming. I hope we can be as much help and support to you.

Take care. :blink:

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Welcome Louise to our forum family. I'm glad you found us. Wow, you have been hand a major decision, I don't know how I would have handle if I had a choice. I'm a bilateral bka and I, also, lost all my digits except 1 1/2 thumbs. I wish you all the best with what ever you decide.

Patti

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