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Heather Mills - Amputee Forum
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Kender

Crazy, Stupid, or Thinking clearly despite the meds.

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I'll start by warning that this may be a long post but I will try to cut it short where possible. I am not an amputee yet and even if by some miracle I can keep my leg the last several months spent researching amputation has given me an education. This education and all the people that have opened up to me since amputation has become a possibility has forever changed my perception of amputees....in a good way. I was like the normal person, felt sorry for an amputee, curious about their situation, embarrassed to ask, and not sure how to act. I now know amps are no different than anyone else...well maybe they have some differences but no more different than short/tall, black/white, skinny/fat, etc. So even if I get that miracle I am glad that I had my eyes opened and my mind was improved so that I will treat amputee people as just people.

On to my situation. I am a 32 year old father of 2 daughters, ages 4 and 2, my injury happened before my oldest was born. I was injured on the job back in Jan 2006, torn meniscus left knee. The Dr. stitched it together to try and save it. Around March 2007 the torn part was cut out since the stitches didn't work. In June 2009 I had a partial knee replacement. This whole time I have not been able to walk more than a couple hundred feet before getting a sharp pain on each step. If I went shopping at the mall my knee would swell up and be in pain until some time the next day. I have not been able to run without pain at any time. My daughters have been to Disney World a few times and the zoo countless times. I have gone with them once to each and suffered the pain of each trip for at least a day afterward. I can't jump on the trampoline with them or chase them around the backyard. Crawling around a playground is out of the question.

I said that I had a partial knee done June of 06, well Dec of 06 the pain started getting worse. I got in to see the Dr. in March after the pain was more than half the day on more than half the week. The Dr. set me up for 3phase bone scan and WBC. This is about when I started to look up the possibilities of what happens when a knee replacement failes...especially as early as 6 months. That's when the possibility of amputation came up and I almost couldn't continue researching it. I didn't want to even think that it was a possibility. My logical side won out and made me realize that it was better to be informed about it just in case rather than not know and have to make an uninformed decision. The bone scan showed/WBC indicated infection/loosening so they took out some fluid. The fluid was negative for infection. By now I was in almost constant pain and the Dr. signed me out of work and set up a surgery date. They went in to take a culture to verify there was no infection, make sure the metal parts were not loose, and everything looked like it should. After surgery (May 24, 2010) I was told that there was no infection and minor loosening of the tibial plate. They pulled off the tibial plate, cleared the cement, cleaned the area, re-cemented the tibial plate (but left the screws out this time), and closed me up. After a few days if the hospital I went home.

The Dr wanted me off the knee for 3 weeks since the last one failed so early he wanted to make sure this one set fully. I was on 5mg of percocet since the operation. About a month after the surgery I developed a MRSA infection along the incision. Luckilly it did not get into the knee and stayed as a dermal infection but it took several weeks for it to go away. Workers comp is slow and the Ortho Dr refered me to infectious disease right away but it took weeks to get approved. The percocet has helped to keep the pain away although I have had to increase the dose from time to time. I have also suffered from a side effect of long term use....shortness of breath. If I unload a single 2x4 of wood from my truck into my garage ( 25ft) I have to lay down and spend 10 min to catch my breath. So I am stuck on the couch 24 hours a day. My ortho refered my to pain management the first week of June. Workers comp approved it the middle of July and my first appt was just last week (middle of Aug). I am now off the percocet and on vicodin and topamax which seem to help with pain but my lungs are still weak and now my taste for soda is off. My pain management Dr. says that my knee pain is chronic and is not something he will be able to cure.

The ortho has refered me to an allergist to see if I have a metal allergy since the surgery in May has not relieved the pain that I have had since x-mas. Just last week a new pain developed, if I put pressure on my knee where the tibial plate is I get extreme pain. If I put the pressure so that the plate would twist off the bone the pain is worse. I will see the Ortho the end of this month to let him know of this new pain issue and to see in an xray if there is cement/bone loss or component movement. So after 4.5 years of pain and 4 surgeries I have no diagnosis and therefore no treatment plan and no recovery schedule. At this point my options for diagnosis are metal allergies, cement allergies, or implant rejection. If it is metal allergy then I might be able to get another replacement depending on what metals I am allergic to.....but then the question is do I want to go through that knowing I will have to have the replacement revised as it wears out throughout my life. If it is a cement allergy then it is pretty much the same thing as the metal allergy, if there are different cements. If it is implant rejection then it is either knee fusion (absolutely not an option in my opinion) or knee disarticulation.

This is where my dilemma comes in. I know something is wrong, the pain is not right and the swelling should not be where it is. Even if it is a metal allergy and there is an alternate metal that could give me a knee replacement I am afraid that with my history and high activity (K4 in the amp world) job that I will need a revision knee replacement within 5-10 years. I have already had 1 revision and there are a limited number before you have to get a fusion or amp. At that point though the amp is a through femur amp as opposed to a disartic that I would have if I had one now. I have missed out on both my daughters lives so far and I don't want to miss out on more because I am dealing with chronic pain, or recovering from another revision surgery or in pain because I need another revision surgery. So I am at the point that I am thinking that an amputation would give me my life back. I know it would not be a cake walk. I know there would be bad days....but not every day. I would have times that I would need to go to a prosthetist but again not every day. Even the days that I can't wear the leg and I am in a wheel chair at least I am not in a depressive miserable state like I am now because I have been stuck in pain for months on end. I know amps have challenges every day. I have a wheel chair now for the few times that I need to go out to shop for food or see the Dr so I know about some challenges. I can't help thinking that the challenges of an amp are a small price to pay to cut off this constant pain, to regain my life with my wife, to gain a life with my kids, and to regain my life.

Am I crazy for thinking that quality of life is worth my leg?

Am I stupid for wanting to be done with this 4.5 years of suffering and just cutting to the chase?

Am I actually thinking clearly despite the drugs and wanting to do what the rest of you would do in my shoes?

I'm alone and miserable. I want the drugs to go away. I want to go back to work. I want to be part of my family again. I want to be rid of this pain. If it cost me a leg, I'll pay it.

D.J.

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D.J.

Only you can make the decision as to whether or not amputation is right for you but it seems from your post that it may be an option. Have you talked this over with your wife/partner, what does she think? My circumstances were very different but I had an elective amputation over 30 years ago and have never regretted it as I have a much better quality of life BUT it is not always the right thing to do. I think you are right to be considering it and doing your research before you go back to see your doctor - at least then you will be able to have a sensible discussion with him about the choices you have.

I'm sure others who have also faced the choice will be along shortly to add their point of view.

Sue

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My wife is behind me with the choice, she wishes it won't come to that but as each day brings more pain she realizes that the reality is that I will probably have to amputate.

I had an appointment with an allergist today who got ahold of my blood work and aspiration results from the ortho. The allergist can't believe that the ortho thinks that I am not infected. He pointed out several numbers that have elevated outside of normal range, one for example: normal=150 which I was in april and in july I was 900. This also matched my pain increase. The one thing that he pointed to that the ortho used to say I was not infected was where it said culture was negative. The allergist was saying that this could show negative several times until the needle hit the exact right spot but these other 4 things indicated infection. So I am taking the copy of these tests to an infectious disease Dr. and see what they say. I just don't want to seem like I am jumping into amputation prematurely or unnecessarily. My fear is that maybe the pain is causing me to jump the gun. I know doctors will let me sit in pain for decades before admitting that amputation might be ok so I am coming to those who have lived it to tell me if I am thinking straight or if I am wanting to amputate because of an ingrown hair.

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While the specifics of your situation are not exactly like mine, I can identify with a lot of what you're saying. In March of 2005, I had an elective below-knee amputation, also after a long history of pain, surgeries, and MRSA. I made my decision after spending a year undergoing repeated surgical attempts to repair a fractured foot. In my case, it was definitely the right thing to do...I've been able to recover my "pre-amp" lifestyle to an amazing degree, and I've also learned a lot about myself in the process.

Sue1 is right...you're the only one who can make the decision. But I think the fact that you've begun to consider that decision may be an indication that it could turn out to be "right" for you. Yeah, I know...that's a pretty wishy-washy statement...but, like I said, the final decision should be yours.

It's good that you're doing research now...keep at it, and maybe even try putting some of it in writing, such as a "pros and cons" listing. If you're concerned about the fact that your pain and the pain meds may be influencing your thought processes, that may be a way to start "keeping track" of your thoughts and decision-making process.

Good luck to you...whatever your decision turns out to be!

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My amputation was more to get my life back sooner than later. They could save my foot, but could I use it and walk with it? Would I be open for infection with every surgery? They wanted 12-15 months of my life for something that might have ended in amputation anyway. I said NO to the plastic surgeon and the ortho doc agreed that amputation would be the best outcome. I have no regrets, but I'm also a person who takes what is given and goes forward.

Talk with other docs. The pain isn't worth it.

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Thanks for the input every one. I had been talking about the possibility of amputation (openly) for a few months and when there was a high probability that it was a metal allergy and could be saved I could say I would have the amputation. I could say it with the safety net in the back of my mind thinking that the metal allergy might save me. Then last week when the pain at the tibial plate popped up I knew there was something beyond just a metal allergy. Either an infection eating at the bone or loosening of the tibial plate....less than 3 months after being implanted.... which means a serious rejection. I know that one infection (when it come to knee replacements) leads to another and another. So I either spend the next several years fighting several infections and revision knee replacements only to end in an amputation.....or my body is refusing the implant. I have no choice over the rejection and I refuse to go through years of pain to get the same result......I had the same problem in school, why do long division when my calculator has the same answer? Anyways, I think the realization last week, when that pain hit, that whatever was wrong would only be solved by amputation kinda freaked me out a little. No matter how much you prepare for it that moment when you finally say to yourself, that it is the right thing to do and you are going to do it, is a bit scary.

It is late right now but I made notes to call a prosthetist in my area, refered by the ertl web site, whom I have already seen. Since I will be getting a disarticulation instead of a transfemoral I feel ok using local surgeons....but I want to use surgeons that this prosthetist recommends for disartics especially since the prosthetist is a disartic as well. The pain with organizing this is going to be dealing with workers comp and how slow they drag things out.

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You're doing good homework. Who's your prosthetist? He should be able to help you now more than anyone.

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Right now it is Bill Copeland at Copeland prosthetics. I have only seen him for a consultation but he is a knee disartic himself and he says he is really picky about making sure that everything on the prosthesis is perfect. I hope he is on the list for workers comp, or at least willing to be added. They were really nice and helpful.

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I've heard of him. Supposed to be very good. If you can't get satisfaction with him, go to Stan Patterson in Orlando. I am probably going to travel down there myself to see Stan.

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I had heard of a place in orlando that was good but can't remember who it was. I was able to talk to copeland and they accept work comp so even if my specific company doesn't have them contracted copeland is willing to work with them. Bill, the head honcho, spent 10-15 minutes on the phone with me answering a few questions and recommending local surgeons. He said to call anytime with other questions. These guys at copeland have been more than friendly, they have brought me in like family. They really have their heart in helping amps and even pre-amps like myself that need the help and support for this life changing event. I have no doubt that they will take the time to adjust every micrometer that is less than perfect.

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