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Heather Mills - Amputee Forum
mikeybucs

Planning for RAK amputation

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Hello. I sure am glad that I found this forum. My name is Mike. I had a total knee replacement surgery in July 2008. Unfortunately, I got a very nasty staph infection in October of that year, and the metal had to be pulled out in January 2009. Even though the infection is long gone, the soft tissues around my right knee are in awful shape, so I can't have another knee replacement. I'm currently walking on crutches with a cement spacer instead of a right knee (my right leg is in a fixed extended position and can tolerate maybe 10% weight bearing, no more). I can do one of three things: either stay with the status quo, attempt a fusion of the right leg, or amputate my right leg above the knee.

After a *lot* of thinking (and more than a little analysis paralysis), I have taken fusion off of the list of alternatives. I don't think that it would succeed, and I don't relish the prospect of putting more metal into my leg (fusion would also require a skin graft from my good leg, which is in pristine condition and must at all costs remain that way). Given that I'm not sure how long the status quo will be sustainable (how long can a spacer hold out, anyway?), I'm currently planning for a RAK amputation. I'm relatively young (35 years old) and in pretty good condition aside from the knee (6'5", 200 pounds, only other medical issue is borderline high blood pressure that is well controlled with medication). I think I will have an excellent chance of surviving the amputation surgery and making a strong recovery.

I'll be seeing my orthopedist in mid-April, and I'm going to pitch the idea of having the RAK. Here's my "rough draft" for how I hope to proceed. I am allergic to no medications (to the best of my knowledge). I'd like to use some combination of a spinal epidural, nerve blocks, and possibly even a light general anasthetic for the amputation surgery, which will hopefully minimize the immediate post-op pain. Then, I can get the PCA pump to control pain during the following days. I had a blood clot after my last surgery, so I'd like to take something like warfarin to prevent another one from forming. Also, to help hold down the post-op nerve pain, I'd like to take Nerontin as a precaution against early phantom limb problems. Finally, I'll need to take some type of antibiotic, given my history of staph infection. Hopefully, with all of those chemicals at work, I'll be able to get up and moving fairly soon after the surgery (next day, if possible).

I'm very fortunate in that I have access to some of the best doctors in the world (I'm being treated at Stanford Medical Center in California). Now, I just have to convince them that my best opportunity to regain some mobility and independence is to take off the leg. I get the impression that my doctors view amputation as some type of failure. That's not how I view it at all. Getting rid of this albatross would be a blessing. My orthopedic doctor told me during my last visit that he was concerned that I was too young for an AKA and that I might not have as much mobility as I currently enjoy (which, obviously, isn't much at all). Since that appointment, I have discovered the C-Leg and the Plie prosthetic limb. When I go back for a follow-up appointment next month, I'm taking this information with me. Seems like I'm the prototypical candidate for these prostheses.

So that's my story. Judging by what I've read on this forum, many of you have been through much worse. I would really appreciate it if any of you would assess the viability of my plans for surgery. If I'm missing something, please fill in the blanks. If you'd go about things in a different way, please let me know. I'm 99% sure that a RAK surgery is inevitable at some point in the future, but I want to be as close to certain as possible before I proceed. Thanks!

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Sounds like you've really done your homework. That's good. I don't know that you'll need all the meds. I had no pain following amputation. It made me wonder if the stump was even alive as I was casted. I did experience phantoms for 4-6 weeks following surgery with no meds. They went away when I started using a prosthetic. I know this doesn't happen with all amputees.

I went in for elective amputation on Monday AM and was home by noon on Wednesday. No rehab either.

The only thing I would do differently would be to have Dr Ertl amputate. The Ertl procedure allows a better, more muscular stump.

Good luck to you.

Neal

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Welcome to the forum .... I'm Higgy, part of the admin team, and a left below knee since 2002.

It sounds to me as if you have done your homework on this.. Sorry that it had to come to a choice for you, but at least you sound as if you are trying to get very educated about it..

I do have a couple of pieces of input if you don't mind.....

First, you are very right that a lot of doctors consider an amputation as a failure/last resort. I guess as healers, they don't think they are actually healing someone by doing it..

Second, as for the Neurontin, it doesn't always work.. It didn't for me, but they also have other drugs that work as well.

Third, if you are in California, have you checked into the possibility of having the Ertl proceedure done as part of your amputation. There are a few members of the forum that have had it done with huge success..The Ertl proceedure creates a "bone bridge" at the end of the bone/bones to help take the weight while on the amputated limb. If it were me, and I could swing it, I would consider it. Why have 2 surgeries when you don't have to, if you are interested in this. There is a thread here on the forum for it. I believe it as the bottome of the page on the thread listings.

As for prosthetics, well, that is a discussion with the future prothetist in your life..Prosthetics are designed for a lot of different things. i.e., weight of the person, activity level - which they shouldn't give you a leg that is for a different level of activity if you will never use it for that. I would also take the time to check in and talk to some local prosthetists in your area. They can have a great amount of input as to pre-surgery things as well. A good person to "bounce" things off of, if you will.

Sometimes, personalities will differ and the first one you see, you might not get on well with. They are just like doctors or any auto mechanic. You want to make sure that you are able to have open lines of communication with them..

Obviously, you have a little bit of time to check into some things, which is a great thing. My amputation was due to the trauma of an accident, and I wasn't given those choices. I was lucky enough that my first (and only) prosthetist and I have gotten along very well. As a female, I am extremely active on the farm and sometimes, it requires thinking "outside the box" if you will. He has to make adjustments to allow me to function on the machinery that are polar opposite of what he learned when he was in prosthetics school.

It sounds as if you are using your time well.....

Again, welcome to the forum........

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Welcome from me too... I had my leg around for 10 months after my accident and the best I could hope for was an arthrodesed knee. When I had it amputated it was a relief, as soon as you're over the mental image of your new body shape everything is better from that point on compared to before.

If you can only put 10% of your weight through your leg, and amputation is an obvious decision, regardless of what the doctors say. I'd go for it every time.

As for the references to ERTL, I'm a bit confused, as far as I knew that procedure is for BK amputations and concerns the treatment of the Tibia and Fibula, you are proposing an AK amputation, so references to ERTL don't apply. Please someone educate me if I've misunderstood.

It's good to do your homework, but don't get too settled on what drugs you need or don't need, the surgeon will help there. I had a similar experience to Neal, I had phantom pain for a few weeks and none to speak of for the following 26 years and counting, without any specific drugs to overcome it.

Use my voice to convince the doctors if you need to!

Good luck!

I've had a look at the ertl site Clickety click! (click on the "'ertl' pages" button on the LH side of the screen) and I was wrong... it applies to AK amputations too, but perhaps more commonly the BK is what we hear about because it's slightly easier to understand maybe?!

Edited by oneblueleg

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I dont envy your situation, in that you have to make a choice. I had none, since my leg was severed instantly. While the pictures paint that prothetics are wonderful, and even "give an advantage" for olympians, there is a reality that exists that you should be aware of- particulary for above the knee, and that it takes a lot of time and work for the prosthetic to fit properly, and even then there are good and bad days. The C-leg is a fine knee, and there are several others similar that have microprossesors to help aid in the walking. But in reality, they are little more than an advanced "braking" mechanism that helps control the swing of the leg. The actual work is mostly done by the hip muscles. For me, its been a little over a year since my accident and I am just now able to walk short distances without the cane. Like many, I had to have a revision surgery- I had bone growth on my amputated leg that had to be removed, and so its been a bit of a long journey.

Having said all that, I would opt for what I have now, vs the 10% you have in your leg. The question I would ask yourself is have you completely gathered all the information out there to make certain before that its the only viable option before you remove it-- that there is no hope of something better, now or in the future that could "fix" your knee. While you are with a very reputable Hospital, and your Dr. may be one of the best, like anything else, medical technology advances quickly and no one person can know everything that is out there. I would get a second or even third opinion about your knee before you go through with the amp. I do know of one of the top knee surgeons in the Houston medical center, who is the director of Orthopedic medicine at one of major hospitals, if you are interested I can email you the information.

I think yoiu are very wise in coming here for information and to seek the experiance of others. I know I have learned a lot here, and it has helped me in my journey. Good luck with it all.

Dale

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Sounds like you've really done your homework. That's good. I don't know that you'll need all the meds. I had no pain following amputation. It made me wonder if the stump was even alive as I was casted. I did experience phantoms for 4-6 weeks following surgery with no meds. They went away when I started using a prosthetic. I know this doesn't happen with all amputees.

I went in for elective amputation on Monday AM and was home by noon on Wednesday. No rehab either.

The only thing I would do differently would be to have Dr Ertl amputate. The Ertl procedure allows a better, more muscular stump.

Good luck to you.

Neal

I agree with Neal on the meds- especially with the Gabapentin (Neurotin). I have experianced phantoms since the beginning, and still have them to this day. My Dr put me on Gabapenton, which reacted badly with the Vicoden I was taking. I then switched to Lyrica, which worked fairly well- the sensations didnt go completely away, I could still the sensations, but they didnt "hurt". However one of the side effects I experianced was short term memory loss. Over time, my brain tunes out the phantoms, and I will occassionaly get a "jolt" or two, and the rest of the time the phantoms for more like background noise. Its one of those things that the body learns to adapt to.

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Wow, I am extremely grateful for all of the quick replies. It's very encouraging to hear that some of you have been able to control the pain after the surgery. I do anticipate a long tough program of physical therapy (been down that road before after the knee replacement).

One of the things that's helped me with my decision has been to make a list of the pros and cons associated with taking off the leg. Obvious cons include the mortality risk associated with major surgery, potential long-term chronic stump or nerve pain, the potential for infection, the prospect of future revision surgeries, and the chance that I might not be able to ambulate well with a prosthesis. All valid concerns.

Now for the pros. No more chronic pain caused by the spacer rubbing up against the bones in my right leg. I'll be able to fit behind the steering wheel and drive again. I might be able to go to the store and shop without trying to juggle the groceries and the forearm crutches. I should be able to completely regain my independence (I've had to stay with my folks for the past year). Following a successful rehab, I should be able to return to work (I had to take a disability retirement from a terrific job after the failed knee replacement). That last one is a big deal for me. I've always been a worker, and having an unlimited amount of unstructured free time is not as great as it sounds. Believe me, the novelty wears off. I would love to be able to go back to work.

After weighing everything, I think the scales tip in favor of taking the leg off. There's a difference between existing and living. When I'm 85 years old (knock on wood), I think I'll look back and feel certain that this was the right decision. If I encounter any unfortunate complications, well, nothing in life is ever guaranteed. Sometimes you have to take a calculated risk to improve your situation, and at least I'll know that I gave it my best shot.... :-)

Thanks again for the input. It is invaluable!

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Hi Mikeybucs,

Welcome to the forum! Glad you found us here. It is wonderful, supportive, informative place. I must say first that I admire you a great deal. I know that what you are going through in not at all easy. You seem to be doing your research and are very level headed and realistic about what you are facing. That is an incredible place to be in this process. We are very similar in our situations. My left hip disarticulation amputation wasn’t sudden and came after several severe MRSA infections. My leg has been worn away from disease for many years and I had been on crutches for 15 years prior to my amputation. I knew eventually the infections would take my life, so after much thinking and soul searching, I knew it was time to let go of my leg. I spent a year talking to different surgeons and prosthetists, weighing my options. I took my time to educate myself and make the right decisions, which sounds like exactly what you are doing. I agree that you may not need all the medications you mentioned, but it is good to know what is available to you. I was fairly comfortable after my surgery with a PCA pump and was up walking on my crutches the next day, so that is definitely possible. I was only in the hospital for 6 days. But shortly after I came home, that is when the phantom pain began. It was very severe for a few months and was put on Neurotin and narcotics. I just had my year anniversary last month and I have mild phantom pain, but nothing like in the beginning. I now only take a small 300mg dose of Neurotin at bedtime where I had been taking over 2400mg per day at the beginning. It worked fairly well for me but some swear by Lyrica, which is another option. I was able to return to work 2 months after my surgery.

As for prosthetics, I just started with mine just three months ago. I have a C-leg and it has been working very well for me so far. There is also the Rheo knee to consider as well that has worked very well for many. Take the time to talk to several different prosthetists to find one that you feel comfortable with and who understands and listen to your concerns and issues. Finding a prosthetist that you can relate well to is very important. They are going to be a very vital person in your life for years to come!

I don’t regret my decision. So far, some amazing things have happened. I can now walk with only a cane and without crutches for the first time in 15 years and I skied for the first time this winter. You can definitely have a very full and active life after amputation. But in the end, you have to listen to that inner voice as to what the best choice is. I so very much believe in that. For me, I just knew it was time for amputation and I was ready.

Good Luck and keep us posted!

-Chrissy

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hi and welcome to the board also. man... I am glad I did not have time to make any decisions like that. They made me think it was life or death. I wish you luck no matter what your decision is and hope to hear from you also. :)

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They do the Ertl proceedure on above knee amps as well...

One of our members had it done and she is an ak.. If we're lucky, she may check in...Not being an ak, I wouldn't want to begin to suggest that I know how it works on an ak.

Hey Karen..... are you around?

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Hi, Mike...another late "welcome!" I'm another BK elective...wish I'd felt that I had the time to research everything as thoroughly as you have! I was in so much pain and carrying so much infection in my system by the time we started considering amputation for me that all I wanted was to get the leg off ASAP! I did all my research after the amp, during my recovery time. Fortunately, I had a good "team" assigned to me, helping me adjust to my new situation.

I have to put my own two cents in on the "pain meds" issue. I think it's good that you've given it some thought, but I agree with the others who caution that you may not actually need everything you're looking at on that front. I was astonished just how little pain I was dealing with, post-surgery. I had morphine immediately following my op, but it was gone after a day...I also had a LOT of pain meds in the days immediately BEFORE my surgery, and I've since learned that this can be a good way to ward off phantom pains in the future. I tend to believe that...I have remarkably few instances of "phantoms." In the days post-op, the drug that worked the best for me, relieving any pain and still letting me be alert, was plain old tylenol.

Good luck with your decision...I'll leave the "practical" stuff to the AKs, but I will say that losing my leg was the thing that let me find my life again.

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They do the Ertl proceedure on above knee amps as well...

One of our members had it done and she is an ak.. If we're lucky, she may check in...Not being an ak, I wouldn't want to begin to suggest that I know how it works on an ak.

Hey Karen..... are you around?

I've put a link in my post above Higgy, it explains it all... if you can understand it!

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My experience with the AK Ertl procedure was as a revision to an amputation done 35 years prior, so had a lot of atrophy, bone spurs, and a neuroma. It was not a 100% success for me because it did not give me the "dynamic and stable tissue envelope" I was hoping to achieve with the surgery. My "tissue envelope" is actually less stable than before. That said, I no longer have the bone spurs and neuroma. It should also be noted that doing an Ertl procedure as an intial surgery would probably have a better outcome since there wouldn't be a lot of atrophy to deal with.

Most "standard" amputations now bring the muscle around the bottom of the femur bone to make a pad and then secure it to the lateral side of the bone. I know people who have had very good results with experienced (non-Ertl) surgeons using standard procedure. Just be sure that someone on your team has lots of experience with AK amputations. You might even ask them if they can put you in touch with some of the AK patients they have worked with.

Hope I've been of some help.; yours is not an easy decision to make, but it sounds like you are doing a good job of gathering info. I wish you the best of luck, whatever you decide.

Karen :-)

AK

Orlando, FL

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Let me just add, I took neurontin for two weeks before my surgery and never have had phantom pains worth bothering with, and more than 2 years post op, I can still say that getting rid of my painful useless limb has never been cause for regret or even doubt. I was fused for 8 years before my AKA and from day 1 it was like descending into hell. I have a full and happy life now. Don't let the doc's who do regard amputation as a failure drag you into their erroneous ego trip.

All the best to you, whatever you do, don't stop asking questions.

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Hi mikeybucs, how did you get on at the ortho clinic?

I was in exactly the same position as you, only I went thru 3 revisions in total. Infections varied between Strepptococcus and MRSA. I see its your first knee. I'm suprised youve had the cement insert in so long. Here in the UK when I had my metal work removed the cement insert (which is usually a slow release Gentamycin block) is in no longer than 3 months then the revision is completed.

I do sympathise with you totally and if you think you can convince the surgeons to go ahead with the amputation then go for it. The fixation is a disaterous way to go, I've seen the results first hand and its awful. Also, its likely the metal work is causing the infetions so to fix with metal work is only going to delay the innevitable in my opinion.

Each time a TK replacement revision takes place a longer implant must be used due to bone loss, soft tissue damage is much greater and scar tissue extensive (adhesions are a great enemy of the tkr). I believe if infection is present in a tkr then subsequent attempts to revise will be unsuccessful due to infection reoccuring.

Don't put yourself thru what I had to go thru. I am managing really well 6 weeks in and get my limb in just under a weeks time. I'll never look back or regret a thing.

Good luck with it all.

deets

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I'm in the same boat as you and deets, just on a different deck. Both of you are further along in the process than I am. Knowing that there are others out there with the same thought process and issues is reassuring. I am on my first failed knee replacement and my revision surgery is this monday (5/24) and I can't wait to wake up from it and find out the results. Bone scan/WBC scan/x-ray/symptoms/MRSA history all point to infection. Culture of bloody synovial fluid is the only test that indicates no infection. I currently test positive for MRSA and a UTI so the chances of a culture taken during surgery being positive is really really really really high. I have already decided that if it is positive I will have an amputation. Deets went through a lot before having an amp and I don't envy going down that road. I also agree that if infection is present in a knee replacement then it is highly likely that further revisions will also be infected. Since each revision takes away more and more bone the end of the road is an amputation anyway. Months on crutches sucks, if I end up with an antibiotic spacer it will only be in long enough to get me a DR that will amputate. Good luck with your journey and know that your not crazy for wanting to skip years of pain and immobility.

DJ

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Kender and deets, thanks for the words of encouragement. My visit with the ortho last month went very well. He agreed that amputation was a rational option for my situation and gave me his blessing to find a specialist to perform the AKA (he doesn't perform amps). My initial hope was that I'd be able to have Dr. Jan Ertl perform the procedure at Kaiser Hospital in Sacramento. Lo and behold, when I went to make the appointment, I found out that he has moved on to the University of Indiana. I have great insurance, but I need to stay in the State of California for this procedure. The only other Ertl-approved physician in California is under exclusive contract with the military and the VA. Looks like I'm going to need to have a traditional AKA after all.

Now, my focus is on finding an experienced vascular surgeon to perform the procedure. Stanford's vascular department agreed to take my leg off, but they recommended that I try to find an AKA specialist instead (inexplicably, Stanford doesn't perform many AKAs; just a handful per year according to their vascular chief). So, I'm off to meet with another vascular surgeon this coming Monday (he was recommended by a local prosthetist). I'm going to ask a lot of questions about how he'll treat my arteries, veins, and nerves to try to minimize complications and maximize my chances for a good recovery. Blood clots and infection are also high on my list of concerns. Additionally, I'm going to ask about getting a spinal epidural prior to surgery and having it kept in place for a few days after the operation. I don't know that this will do much good to ward off phantom pain, but it's worth a shot (pardon the bad pun). :-)

I did get a chance to meet face-to-face with a prosthetist, and we discussed the rehab process and the various microprocessor knees on the market. Both the Rheo and the C-Leg look very promising, but I don't anticipate ever having a perfect gait. To be honest, I'll be thrilled if I'm able to get around reasonably well without the need for crutches.

That cement spacer is what clinched my decision to have the AKA. There really just aren't any alternatives to an amputation. I can't have another knee replacement, so that option is off of the table. If I put a whole bunch of metal into my leg and fuse it, I run the risk that this will get massively infected. Then, I could be looking at a hip disarticulation amputation instead of an AKA. And the status quo with the spacer is simply unsustainable. I asked my ortho when the spacer would fail. He told me, "Nobody knows." However, it is expected to fail at some point. By process of elimination, the only procedure left on the table is the AKA. Easy choice.

I will most likely continue to be a nervous wreck between now and the date of surgery. That's life. What doesn't kill us makes us stronger. I hope I'm stronger this time next year! :-)

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Hi mikeybucs, how did you get on at the ortho clinic?

I was in exactly the same position as you, only I went thru 3 revisions in total. Infections varied between Strepptococcus and MRSA. I see its your first knee. I'm suprised youve had the cement insert in so long. Here in the UK when I had my metal work removed the cement insert (which is usually a slow release Gentamycin block) is in no longer than 3 months then the revision is completed.

I do sympathise with you totally and if you think you can convince the surgeons to go ahead with the amputation then go for it. The fixation is a disaterous way to go, I've seen the results first hand and its awful. Also, its likely the metal work is causing the infetions so to fix with metal work is only going to delay the innevitable in my opinion.

Each time a TK replacement revision takes place a longer implant must be used due to bone loss, soft tissue damage is much greater and scar tissue extensive (adhesions are a great enemy of the tkr). I believe if infection is present in a tkr then subsequent attempts to revise will be unsuccessful due to infection reoccuring.

Don't put yourself thru what I had to go thru. I am managing really well 6 weeks in and get my limb in just under a weeks time. I'll never look back or regret a thing.

Good luck with it all.

deets

Sounds like you're doing great after your amputation. Glad everything's working out well for you. That's the outcome I'm hoping for, too. Best of luck with your rehab!

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I'm in the same boat as you and deets, just on a different deck. Both of you are further along in the process than I am. Knowing that there are others out there with the same thought process and issues is reassuring. I am on my first failed knee replacement and my revision surgery is this monday (5/24) and I can't wait to wake up from it and find out the results. Bone scan/WBC scan/x-ray/symptoms/MRSA history all point to infection. Culture of bloody synovial fluid is the only test that indicates no infection. I currently test positive for MRSA and a UTI so the chances of a culture taken during surgery being positive is really really really really high. I have already decided that if it is positive I will have an amputation. Deets went through a lot before having an amp and I don't envy going down that road. I also agree that if infection is present in a knee replacement then it is highly likely that further revisions will also be infected. Since each revision takes away more and more bone the end of the road is an amputation anyway. Months on crutches sucks, if I end up with an antibiotic spacer it will only be in long enough to get me a DR that will amputate. Good luck with your journey and know that your not crazy for wanting to skip years of pain and immobility.

DJ

I had surgery to explant an infected knee replacement in January 2009. In retrospect, the only thing that I would do differently would be to have spinal anesthesia instead of relying solely on a general. Other than that, hospital staff did a beautiful job with pain management.

I completely agree with you about repeat infections. It seems to me that putting any metal into someone's leg after they've had a bad infection is akin to playing Russian Roulette. I was extraordinarily lucky to avoid sepsis when I had my infection. Never again. No more metal for me.

I wish you a lot of luck with your surgery this Monday!

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Mikey, thanks for the well wishes.

One thing I forgot in my first post is that I am also big proponent of the Ertl procedure. If you can not get an Ertl DR. for the procedure then the next best thing would be to find a DR. that will do all the same steps that are involved in the Ertl.

You have mentioned the microprocessor knees and both the ones that you mentioned get good reviews, as with anything there are also some bad reviews as well. There is another Micro-knee to look at, the Plie by freedom innovations. I looked at the c-leg and rheo at first and had decided on the c-leg because of the gate/stance controls. I got to talk to some people that had used the c-leg and had horrible issues with customer service and some glitchy behavior with the knee. I have found that a lot of people tend to mix manufacturers when choosing a knee and a foot (don't forget you need one of those as well :) ). The c-leg warranty is void if you don't use their feet and judging on the reviews of their feet compared to others you would certainly want to use a different manufacturers foot. After getting some of the bad stories on the c-leg I started looking for other options and came across the Plie. I liked it because of it's specs, but there are 2 features in particular that other micr-knees don't have and this sold it for me. First is it is water resistant, it can take a splash/rain/spilled drink and not tweek out. My prosthetist told me he was at a convention and there was a plie in a tub of water and working while submerged, of course they don't recommend it as a water leg but this illustrated the point. The second thing that sold me was the power supply. The other knees that need to be charged have built in power supplies so if the knee dies during the day either your stuck or you have to sit next to a wall outlet while it charges. The Plie uses a removable battery and can charge the battery outside of the knee. Now your probably questioning how many hundreds of dollars a backup battery will cost you....it actually uses a camera battery. If memory serves it is a panasonic battery that can be bought on the cheap at a local retailer. I am still keeping my eye out for any bad reviews on the Plie, keep in mind they just released a version 2, so if there are issues I can evaluate them. Barring anything significant the Plie will be the knee I get. I'm not so sure on which foot but for my activity level (K4) I am looking at the renegade by freedom innovations or the echelon by endolite.

I don't think I spent this much time researching what car to buy and the car cost me money. With my workers comp or private insurance I don't have to pay anything....I got really lucky for once.

You mentioned being happy with just getting around reasonably well. If you want my advice you need to change this expectation. Set your goal for a perfect gait. If you fall a little shy of that then so be it, as long as in the back of your mind you have a reasonable minimum gait level. If you set your goal too low you may not know what you can achieve. I realize that since you've been on crutches for so long getting back to a normal gait will take work but the more perfect your gait the less your body is thrown of alignment and the less problems you will have later. Also think of it this way, how long have you been walking normally? Since the age of 1 or 2, that's how many years? Now compare this to how long you've been on crutches.....doesn't seem like getting a normal gait is such a high goal now. I have seen some amps that you have to stare at and study to see the minute difference in stride. My prosthetist is an AK and walks as naturally if he had his bio knee. It can be done and with a long residual limb plus having the muscles reconnected so they can be used it will be even more likely. I know that you feel that if you can just hobble around with those $#%@&* crutches you will be happy, but that will be short term happiness. Take the extra time and effort, from the begining, to relearn how control your muscles so that your gait is near perfect. This will keep you from learning bad habits that are hard to break down the road when the short term happiness wears off.

3 days and a wake up 'till my surgery. I'll update when I get more info. I hope you get your surgery soon and can get back to good mobility. Keep us updated with your progress as well.

DJ

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I've read on the Ertl website that he travels to you to do the operation if required... may be worth asking...

That would be amazing. I placed a call to Indiana and left a message for Dr. Ertl as soon as I read this. He seems to be an extremely busy individual, so I don't have high hopes that he'll be able to travel to California to perform the surgery. However, it never hurts to ask, so that's what I'm going to do. Thanks for the suggestion!

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I've read on the Ertl website that he travels to you to do the operation if required... may be worth asking...

That would be amazing. I placed a call to Indiana and left a message for Dr. Ertl as soon as I read this. He seems to be an extremely busy individual, so I don't have high hopes that he'll be able to travel to California to perform the surgery. However, it never hurts to ask, so that's what I'm going to do. Thanks for the suggestion!

I'm sure where I read it, he was offering to travel to London, England so I would imagine California wouldn't be a problem, I have my fingers crossed for you.

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mickeybucs i'm amazed your surgeon won't do the amp!!

Mine had no quarrels doing it, in fact I'm so glad I asked him to do it because he did over 200 ak amps whilst in general surgery training which I guess stood me in good stead!

I'd love to be able to comment about the Ertl proceedure more, I thought the proceedure had a much greater sucess with bk candidates--obviously I need to read more on it.

I really do believe as do most it appears, that amputation is the best way forward for you.

My best advice is to like me make sure any surgeon has extensive experience doing ak's

I wish you all the best though.

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I met with a terrific vascular surgeon yesterday (recommended by my prosthetist), and my right AKA surgery is officially scheduled for next week. It's kind of funny. As I was getting out of the car to go in to the appointment, I noticed that there were three other businesses sharing the same business park along with the medical practice. ALL THREE of those other firms were prosthetics specialists. The surgeon has a lot of experience performing amps. Plus, I got a really good vibe from the appointment. The doc did say that, given my age (35), it's pretty likely that I will need a revision surgery someday due to accumulated wear and tear on the stump. We discussed post-op pain management, and I feel pretty sure that everything will be squared away on that front. All in all, I feel extremely confident that this is going to go well.

Incidentally, I did make contact with Dr. Ertl in Indiana. Seems like a great doctor. He called me back the same day I left a message for him. Unfortunately, I would need to travel back to Indianapolis for surgery. For a lot of reasons, that's just not feasible.

Next Wednesday (06/02/2010), at 1:00 PM Pacific Standard Time, this albatross is gone. Good riddance. This leg has been nothing but trouble for almost three decades. I do feel a little sorry for my foot, though. An unfortunate innocent bystander in this whole mess. :-)

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