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Heather Mills - Amputee Forum


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Everything posted by Kender

  1. Kender

    Just wondering?

    Wow, I think I found my twin. I am still waiting for my amp but it will be an left disartic (which I look at as a really long AK since all the hardware is the same), even close in age.... I'm a year older. I'm also just as crazy as you, my job is with the phone company working outside on uneven ground, down in manholes, up on telephone poles, and lots of ladders. I have people telling me that they don't see how I'll be able to go back to work and I keep telling them that if amps can ski and snowboard then climbing a ladder should be no problem.
  2. What the heck is up with this. I just got back from an appt with my primary ortho and I am pissed at his attitude towards my treatment. Ok, first a little back story of this weeks events. I went to a secondary ortho because on a previous appt with him he was more receptive to my input. He said that we could try one more save attempt but it was up to me since I had to live with it. I told him I just wanted to get it over with, so he referred me to a vascular surgeon. Then today I went to the first ortho and he said he would do the surgery to save the leg. I told him that I didn't really want to go that route as it would be the 5th save attempt and I am tired of the constant pain and my life being on hold. I asked him what my options were if I decided not to have the save surgery. He said if I didn't want the save surgery then my only option was to live with the pain. At first it didn't hit me but after the appt I realized that he basically told me that I could do it his way or no way. What the hell is wrong with this guy? I have no input at all over my medical care. He is going to dictate what treatment my knee gets regardless of what effect it has on me THE PATIENT, and totally ignoring the fact that it is MY knee not his. This was the last straw, I'm switching to the 2nd ortho and using him as my primary.
  3. Kender

    Can an ill fitting prosthetic really cause problems?

    I don't have personal experience yet with any prosthesis but I have found some info while researching my upcoming surgery. During amp surgery sometimes the nerves get moved around or when getting cut they are now ending in a new area. What this does is cause your brain to misinterpret the signals. For example a nerve that was on the bottom of your foot may now stop on your arch, so when you have pressure at the arch your brain gets the signal on the nerve that was always on the bottom of your foot. This causes you to tell the prosthetist that you have pain at the very end of your foot when really the issue is at the arch and the prosthetist ends up "fixing" the wrong area of the prosthetic. I read an article where a guy had a problem with his AKA being too tight in the back.....turns out that the tightness was really in the front and the nerve had gotten moved during surgery. The article suggested applying pressure to your limb with your eyes closed. Concentrate on where the pressure is and then open your eyes and see where you are really touching. If the reality doesn't match with your brains interpretation then you need to retrain your brain by stimulating the nerve while looking and identifying the correct area. I don't know if you have done this already or if it is even your issue but it's a possibility so it would be worth giving yourself a foot massage to figure it out. Hope this helps.
  4. Kender

    Doctors think they own you.

    Thanks. The 2nd ortho was great. He is recommended by other doctors and is considered top shelf in this area. Luckily he is a real doctor and realizes that his first duty is the care and welfare of the patient, his second concern is for his specialty. He gave me his thoughts and said "It's your choice though, I'm not the one that has to go through it." He understood that I wasn't coming in with a hangnail on my first visit and asking for an amputation. He considered my past and that I have suffered through enough that I should be able to have a say. I think the fact that I had done my research and could speak knowledgeably about amputation showed him that I was taking responsibility to be informed and not just be a passenger on a health care rollercoaster. Workers comp said they just need to get the paperwork from the DR. that refers me to the vascular surgeon and they will set up my appt. They are ok with the amputation as long as the Dr agrees with it, they just can't take my word for it due to liability. So 2 down 1 to go, I need a vascular that will agree to it. Hopefully since this ortho has agreed to it and I have an actual medical justification the vascular Dr will be agreeable. I can't help but think that the original ortho might be taking it as a personal failure and refuses to control his ego for the patients well being. If these doctors went through just 2 weeks of what we deal with they wouldn't second guess us again.
  5. Kender

    Why is this Forum so Dead?

    I'm here several times a day every day checking on the most recent posts and if there is one I can contribute to. I am out of work due to my injury/surgery and have no clue when I will be getting back to work. I am not an amp yet so some things I can't answer but I have spent sooooo much time researching this in anticipation of my future amp surgery there are a lot of things I can answer. It especially helps when some of the newer people on here are in a similar situation. There is one other site I go to for amp support and it is about equal in traffic as this one is.
  6. For me appearance is the last concern. For function I would go with a microprocessor knee. The control you will have over your leg combined with the response of the Micro knees will give the most natural gait possible. I plan on the Plie 2 by freedom innovations. With a standard pyramid adapter it is 9.25 inches high and with a threaded adapter it is 8.75 inches. As long as the build height of the leg can fit under you then I wouldn't worry about it sticking out a few inches beyond your other knee when you sit down. When I get my amp it will be a through knee as well so I know the issues you face for equipment fitting, not everyone makes a knee for disarticulation amps. Even with some of the headaches of the through knee I would take them because the benefits far outweigh the cons. For one your socket top edge can be lower so it doesn't get as "personal" with you as a regular AK socket would. You will have better control and strength over your leg so you will end up with a better gait and have an easier time walking. I would imagine your surgery was easier to recover from as well since no bone was cut. Also those time that you don't have your leg on you will have better mobility options since you can put more weight on the end of your leg. Good luck and let us know how it goes.
  7. Kender

    Logic Vs. medicine

    I hope this is the right area for this as it deals with pain and nerves. If you don't know my story that's fine the cliff notes are, I am looking at elective knee disarticulation due to chronic pain in my knee that has a partial replacement (june 2009) and a revision (may 2010) that has not stopped hurting since the last surgery. The ortho Dr. says there is nothing wrong from an ortho perspective and I need pain management. The pain management Dr. says it's a chronic issue and I will need meds the rest of my life. I wanted the ortho to refer me to another surgeon to consult about the amputation. My ortho says that no Dr. will amp a healthy leg. I argued that a knee that hurts so much that while on hydrocodone, lyrica, and cymbalta I still have to use a wheelchair at times.. is not a healthy leg. The ortho said that if I cut the leg off the pain is just going to move up from where the knee was and into the residual limb. This is where my logic said "Wait a F=ing minute". If the pain were all along the nerve going down my leg then I might agree however the pain is in one localized area. My logic says that a damaged nerve or even a nerve that is switched "on" for no reason sends the signal to my brain that it hurts. If you sever the nerve (properly) between the brain and the damage then there is no pain signal to transmit to the brain. The new undamaged end of the nerve doesn't automatically start to generate a pain signal that the damaged nerve was sending. By his logic if your foot is crushed then amputating it is just going to make the pain travel up and your BKA will now have the pain of the crushed foot. I have talked/typed to too many amps to know that the pain doesn't follow the end of the limb the way my ortho is saying. My ortho said that there is nothing wrong with the knee and that the pain is there because it has been there for so long and that I need a nerve block to stop the pain cycle. I asked the ortho why the nerve block he used when I had my last surgery didn't work then....or the times that the pain pills have left me pain free. He didn't have an answer. The pain I have now started coming on slowly back in Dec of 2009 and would happen with increased activity, then by the time I had my revision surgery in May 2010 the pain was constant. Immediately after surgery that pain was gone and I had the post op pain as expected. As the post op pain went away I got an infection along the surgical incision which had it's own pain. As that pain went away the pain from before the surgery came back. At this point the most activity I did was mowing my lawn on a riding mower. All of you know that it is hard to describe a particular pain and even harder to explain how one dull ache with sharp stabs is different from another dull ache with sharp stabs however all of us know that we can tell that one pain is different from another. Basically The pain I had before surgery was gone for a month of so while I had the other stuff going on but then it came back....the exact same pain. This tells me that the surgery did not fix the issue, maybe at most with all the washing out they did it gave me some time while the real problem worked it's way back up to a point of pain. To me this isn't an issue of chronic pain from a nerve that is switched on but an undiagnosed issue. The ortho pissed me off because on one hand he says he knows what is wrong and what treatment is needed but on the other he can't answer question about how pain treatments work and effect nerves. He assumes he knows that all other surgeons agree with him and he won't even consider a consult to see if there is another opinion. I posted this in the hope that those with more experience with amputation would have more knowledge on nerves and pain. Tell me if I am wrong or not in the way I understand how the nerves work. Does the pain travel up the leg with the amp? I know that phantom pains are real and that they could be a form of this traveling pain..... but given a non-traumatic amputation with the pre-treatment available to properly take care of the nerves I don't see having a long relationship with phantom pain. Help.
  8. Kender

    Logic Vs. medicine

    Hey Jane, I have found the docs that I would need to see but my current ortho is an idiot so for now I am stuck but that will be resolved soon. I tried to get up and do some basic house work a couple weeks ago and after a few hours of being on my feet the swelling in my knee doubled and the pain increased. Now each step I take sends a stab of pain into my knee so I am using my wheelchair to get around about 95% of the time. I have not seen my ortho since this latest symptom popped up but I doubt he will care. He hasn't tried to figure out what is wrong with my knee since June, he just says to go to pain management. The last appt I had with the ortho I asked for a referral to a surgeon so I could ask about amputation and the ortho refused to allow me to go down that path. He told me things about amputation that showed me he is either a liar or has no clue about amputation. My infectious disease Dr. wants another fluid draw from my knee to test for infection since the last one was months ago and those numbers were high. I have already made an appt with another ortho that I have seen for a second opinion and this ortho was open to amputation but wanted me to give pain management a chance (about 6 months). Since seeing PM that Dr believes the pain will be a chronic life long condition and it is not something that can be cured. I am hoping the test results will indicate that I have an infection because I will than have a diagnosis and can begin a plan for recovery. If it is infected I will see if my current ortho will then send me to another surgeon for amputation. If he won't then I am seeing the 2nd ortho about a week after that appt (the appts are already set up) and I am confident the 2nd ortho will see things my way. If there is no infection and the 1st ortho still refuses the amputation and refuses to try and figure out what is wrong with my knee then I will see the 2nd ortho and see if he will decrease the 6 month time frame for pain management. Since the PM Dr. says it's chronic I am hoping the 2nd ortho will consider that along with my condition getting worse and approve of the amp. I saw an allergist and I am not allergic to the metal in my knee. I have been to a couple amputee support group meetings in my area and I was able to talk face to face with some more amps. A lot of them had occasional phantom pain that would last for a minute or so but other than that they were pain free. One of the women I talked to even said that she would rather deal with the phantom pains and issues that go along with being an amp than to deal with constant pain every day. It was great seeing all the amputees having fun and going on with life as if they had not lost anything. In fact several of them felt bad for me being stuck with pain, no clear diagnosis, and an ortho that doesn't care. I know for sure that I will recover from amp surgery and will be able to use a prosthetic leg to do everything that I want to do. Now I just need to see an ortho with brains and I can get my life back.
  9. Kender

    Logic Vs. medicine

    Jane, Thanks for the input. I will be getting 2nd and 3rd opinions prior to the actual amputation. I saw another ortho as a 2nd opinion for the knee pain. My ortho referred me to this new ortho as a second set of eyes to make sure that nothing was missed. The 2nd ortho said that further joint revisions would do no good since the bone and implant are good. He said to give pain management a chance and if it didn't work then a knee fusion would be the next option. I let him know that I would not even consider the idea of possibly thinking about maybe contemplating the option of a fusion.....basically no way in hell would I do the fusion, but I will accept an amputation. He said that if that was the case then he would recommend a disarticulation since my femur has good bone stock. If I need further surgery I will look at getting transferred to the 2nd ortho as my primary. I am losing confidence in my ortho's ability to work outside of the box. It seems that if you are a square peg he will still hammer you into a round hole until you fit or snap. I have an increase in swelling, it's a slow increase but it is still there. A misfiring nerve wouldn't cause swelling like this however some other issue can cause swelling which causes pain. Hopefully the next few weeks will tell me what if anything I am allergic to....if the metal allergy is negative I am going to check for allergy to bone cement and the plastic "cartilage" of the joint. You said it right that no one in their right mind would want to cut off a limb and had this been last year just after the first replacement then I wouldn't even be thinking about amputation. It's been the fact of a failed replacement and revision within a short time that pointed me to this option. At this point I can't imagine being pain free with just the random bad days. I could work through the pain of a bad day knowing that I could take a pain pill and ice/heat later that night then sleep it off. This everyday never ending sleep disturbing pain is wearing on me. If I knew it was a productive pain, like going to PT, then I would have higher hopes but this pain is pain just for the sake of hurting, it's not getting me anywhere. I am crossing my fingers that the next few weeks will give me some answers. Keep me updated on how your doing. Do you know what knee and foot you might be getting? DJ
  10. Kender

    New LAK

    Welcome. You will find plenty of people here willing to help out where they can. I am not an amputee yet but I have been facing the possibility for a little while, if I have to get the amp it will be a knee disarticulation so I have had to do all the research that an above knee would. I can't give advice on phantom issues or dealing with socket fittings ( the type of thing that takes personal experience) however I have done a lot of research on knees and feet so I can be some help there. If your job has you on your feet, changing your gait speed/pattern, changing direction, maneuverability required then I would recommend a microprocessor (MPC) knee. Some prosthetists will give you time to try out different knees. Honestly given your working environment I would have expected the prosthetist to try and set you up with something that had better stumble recovery. The MPC knees include Freedom innovations Plie2, Otto bock C-leg, the Rheo knee, and a few others. Of the 3 I mentioned I can't say that one company makes a better quality product over the other however features are another matter. Personally I would stay away from otto bock because they restrict you to using only their feet. The only reason to do this is for money, after all keeping you from using a foot that might be medically better for you is kinda shady in my opinion. My vote goes to the Plie 2, it is water resistant where the c-leg is not, the plie has batteries that can be swapped out should you lose a charge during the day the other knees do not. The stumble recovery will help build your confidence in the leg as you get used to it and once your a pro at walking again the stumble recovery acts as a safety net as you navigate I.V. lines and dodge rookie EMTs. :) Good luck
  11. Kender

    Logic Vs. medicine

    Lynne, I'm sorry your having such a bad time with the pain. If I may ask. What issue were you having that led to the chronic pain pre-amp? I am still checking out my last few options before having an amp. It's coming down to an allergy to metal, and if so how many metals am I allergic to Vs. what metals are knee components made of. Lastly the possibility of nerve runaway, where it just keeps firing in pain even though the cause of pain is gone. Either a nerve block will stop the nerve pulses and let it reset or the cause of pain is still there. If it works, great....if not then I'm stuck with the pain and have to consider amputation. I know I am in pain now and I know I will be in pain next week/month/year if nothing is done. If it comes down to it the amp is a chance of less pain Vs. the certainty of pain if I do nothing. Hope you find some solution to your pain.
  12. Kender

    Logic Vs. medicine

    This was my exact line of thought. your story and stories like yours. Given that my situation is similar to yours, in that it's elective and can be planned for, so I should be able to expect a relatively phantom pain free limb. Right now I'm on pain meds and still in almost constant pain, I would gladly accept an occasional phantom pain...even if the pain took a percocet to get rid of at least it wouldn't be constant. I can handle occasional pain, I work with power tools so pain is not uncommon. It is the constant everyday keeps you awake several nights in a row 4 months later still no end in sight can't do anything with the family pain that I can't stand. I can imagine a pain in a foot that isn't there is like an itch you can't scratch.....on steroids, but given my situation I think my chances are good that I would have far less pain after amp than I do now. I hate doctors that claim they know things instead of just admitting they are human and they would have to research the right answer. Thanks Cheryl
  13. Kender

    Very Disappointing!

    My amp will actually be a knee disarticulation which is one reason why I am not demanding an Ertl. With the KD the end of the femur can handle weight really well and gives me the longest limb possible to control the prosthesis. The Dr. I am going to is not an Ertl Dr. When I see him I will ask if he knows about the Ertl and how he normally does an amp. Then if he does it different than I want I will voice my concerns and see what we can work out. My concerns will be individual stitching of arteries to veins, reattachment of muscle/ligaments to it's complimentary muscle, and treatment of the nerves. My prosthetist (also a KD amp) recommended this surgeon and said that he is pretty much the only surgeon he would still be comfortable with in my area. The prosthetist said that there are other surgeons that he used to recommend but now when you go to them you don't get the Dr. you actually get the physicians assistant. He has seen several of those patients after surgery and the patients have problems from rookie mistakes. He has even sat in during a surgery and was invited to give tips that would help the patient and him with the prosthetic fitting later on. The rookie kept making mistakes and the prosthetist was pointing out the issues that would pop up later from the mistakes.....after a couple of time they told the prosthetist to stand back and be quiet or leave, they wouldn't listen to him anymore and didn't correct the last thing he brought up. That patient had to have a revision. 10 hours till I see the ortho. Hope it goes well. D.J.
  14. Kender

    Very Disappointing!

    I don't have a date or even an approval for my surgery yet. It's a workers compensation claim so it's not just up to me to call the next specialist and go see them, each one needs to be approved. At my last appt the ortho said that the knee replacement is just fine mechanically. It is not out of place, my knee doesn't buckle, it flexes, and extends. There is no infection so he said that from his end everything is fine and there is nothing that can be done for the increasing pain except to go to pain management. The pain management Dr. said that the pain is chronic and nothing that he can "cure", so I'll be on pain meds the rest of my life. The meds just barely take the pain away, so if I do more than sit on the couch the pain increases beyond the meds. I can't return to work while on some of these meds. I am a hands on guy and do all the projects around the house that other people hire out for. I always have 3 or more projects waiting to be started and a few that are currently being worked on. I am not built to be a couch jockey. I have 2 daughters (4 and 2) that I have been minimally involved with when it comes to activities, trip to the beach, going to amusement parks, etc. I have an appointment with the ortho tomorrow morning for a regular checkup so he can determine if I can return to work or not. I know I won't be going back to work but I am going to have the Dr. refer me to the Dr. that I want to use for the amputation and another referral to the prosthetist. Then I can bug workers comp to push through the approval so hopefully I can see the surgeon by the middle of sept. I know I still have a little while to deal with the pain before the surgery but if I can make progress then at least I feel I am getting somewhere. Until now I have just been going from day to day with no idea when I can start to recover.
  15. Kender

    Very Disappointing!

    While I wish there were no need for amputations (in any ones case), I am glad that our circumstances has allowed for the research and education that will make for a faster/easier recovery. I'm on the couch all day, either sleeping or on the laptop, so I have researched almost all I can at this point.
  16. Kender

    Very Disappointing!

    I don't know about the end of the leg being flat....at least not flat in the traditional sense. I am good with structural/building so I can take an educated stab at it. If you can imagine an aluminum crutch, now turn it upside down so the arm pit pad is on the ground. The tip end of the crutch is your knee, the long vertical supports are your tib and fib. The bone bridge that is created is the arm pit pad. I'm not trying to oversimplify but on the keyboard it is hard to draw what I see in my head so, I just want to make sure the picture gets translated through my words properly so that I can help you. anyways, back on the farm.... If you put several layers of towels over the arm pit pad ( which I am sure we have all had to do with our leg issues). Now look at the crutches with the vertical poles side by side like the number 11. With this side view look at what would be the "distal" end of the crutch, the towelsare your muscles and tissue wrapped around the "bone bridge" looking at it from the side the towels may appear flat across from tib to fib. Turn the crutch so that the vertical poles are inline, so you have one hidden behind the other. Looking at the "distal" end from this view the towels are rounded over the "bone bridge". So is the distal end really flat? By the strictest definition, NO, because the towels/muscles round over the end it is not flat. I will take a big leap and assume that your ortho is not an amputee himself? If he were then he would adjust his use of the word "flat" into the context of amps. The distal end would be flat as amps go, if the bones are measured and cut right I would imagine you could draw a straight line from your tib to fib and the bone bridge will be nice and level. You may want to see if this terminology and context of "flat" is a communication error. If this Dr is recommended and you do want to use him then you may have to play his game for this last step. It sucks but go ahead and go to the rehab Dr......with a plan. Call the rehab place and let them know that all you want is a consult for a few minutes, not a full rehab session, and that you would really appreciate their help in getting an appointment immediately. You might even be able to talk to the rehabs assistant and explain your issue, then ask if it possible for them to just refer you back without requiring an appt. If you need an appt. tell the rehab Dr the short story and that all you want is for him to refer you back to the ortho. Then go back to the ortho and put your foot down, don't be rude or anything, let him know that you respect his input however you have to live with this he doesn't. Finally an argument that I love to use when someone says that one way is the same or just as good as the other way.....In your case the ortho saying a regular amp is the same/just as good as the Ertl amp. Your answer to him is this "Ok, If they are the same then it really doesn't matter which way it is done but since it is my leg I would feel more confident if we do it my way". It sucks that you can't straight up throw the facts in his face and prove the all mighty holy Dr. wrong. Wording the answer this way gives in to his ego and acknowledges that you accept his explanation that they are the same.....then it reminds him that you are the patient and have to suffer with the choices. He also can't back out of it since he has already said that they are the same. Chances are he may be to lazy to charge all the L-codes for the bone reconstruction, myoplasty, extra anesthesia for the nerves, etc. He or rather his office staff may only be charging L-codes for a standard amp and now he doesn't want to do the Ertl work for chop and stich pricing. Maybe bring in a printout from the Ertl website about the procedure so you can point out some things to ask him questions about.....this part is a bit of a ruse so that you have a reason for bringing in a printout of info about the L-codes also. You can bring up that you found this info as well and wanted to makes sure that with the extra work he is doing he is billing all and not shorting himself. This does 2 things. If he wasn't aware of the extra billing codes (since office staff normally takes care of this) then you just did him a favor. Secondly, If the Dr is trying to get away with doing as little work as possible it lets him know that you are now aware that he is making a lot of cash for less than a days worth of work. He will either be grateful that you helped him or more willing to do his job now that you know he is making $10,000-$40,000 for less than 8 hours work. Good luck
  17. Kender

    Very Disappointing!

    I feel your pain.....literally and figuratively. I am actually in pain waiting to see my ortho ( on tues.) so I can get referred to an amp surgeon. On the figurative side going to a Dr and anticipating a specific outcome, only to have the Dr shatter that hope is enough to boil the blood. I hate the feeling and I hate that Docs will say if one thing happens then they will do something but refuse to uphold their end of the bargain. So you go through the pain of doing what they wanted and then "oh, well I'd hate to go to that extreme. Why don't we try this first." I am a big proponent of the Ertl. When it's available and/or you are able to get it then that is the choice I would make. In both of our cases the Ertl is out of reach. I have to stay within workers comp network. Since the Ertl doctors themselves are not available I came up with the next best thing. There are 2 reasons why we want the Ertl. The quality of the surgeon and the techniques used in the ertl amputation. I found a prosthetist in my area that is linked to the Ertl website and knows Jan Ertl. I really like this prosthetist so I asked him who he would recommend for my surgery in my area. Since you spend more time with your pros than the Dr. and you get to know you pros really well the pros tends to hear from the patients all the pros and cons about each doc. Let the pros know you wanted the Ertl but can't afford/travel/out of network to go to an Ertl Dr. but you would still like the same treatment to the veins, arteries, nerves, bones, and muscles. This will give you the best chance of the pros pointing you to a surgeon that would fit your wants. When you go for a consult with the surgeon you can ask if he does a bone bridge (the fusion part of the tib/fib at the end). Also ask how he treats the nerves, muscles, and blood vessels. Let him tell you his preferred way first then ask "what about doing this....?" Explain your concerns and why you want these things done. There are doctors out there that do the same procedure or just a slight variance but haven't "registered" with the Ertls. At worst the first Dr. is not what you want and you go to number two but at least your moving forward. When this works out for you you will have a Dr. that does the amp the way you want it done, it is done locally, and you don't have to wait in pain with no end in sight. Good luck
  18. 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.
  19. 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.
  20. 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.
  21. 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.
  22. 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.
  23. Kender

    Phantom limb pain

    Sorry for the delay. The worst of the phantoms faded after about six weeks. In other words, no more stabbing electrical shock pains in the big toe. I still get the pervasive "pins and needles" sensations throughout the missing foot. While they are annoying and make it tough to get to sleep, the phantom pains have improved by several orders of magnitude. I haven't started gait training yet, so I'm crossing my fingers that physical therapy will eliminate the remainder of the phantoms. It's been just over nine weeks since my surgery. Staples are gone, Steri-Strips are gone, and the incision looks terrific. I'm still using a stump shrinker to shape the residual limb. My prosthetist is working with my insurance company to get the green light to start making my leg. From what I've been told, the cost will be about the same for a C-Leg or a Plie2. The choice is mine. I'm still on the fence as to which way to go (i.e. should I choose the track record of the C-Leg or the potential innovation in the Plie2?). I still have time before I have to commit myself one way or the other. I hope your recovery is coming along smoothly, too. I have NO regrets about proceeding with the amp. The last two years represent a speedbump along the journey of my life. Nothing more. :-) Mike B I replied in you other thread but in short I would go with the plie. My recovery sucks. I got an infection (MRSA) along the incision about 4 weeks after surgery. It is gone now, just a few little scabs from drainage points. Now that the post op and infection pain is gone I am able to feel the same pain that I had before my surgery, as if the surgery never happened. I am just over 2 months post op and I still take 5-10mg of percocet every 4-6hrs. I start pain management in a few weeks so I am hoping they can do something to help. The Dr is sending me to an allergist to see if I am allergic to the metals in the joint. We have ruled out all other possibilities and I have the Dr somewhat accepting that amputation may be in my future. This is if I can't take the metal or pain management is going to be life long. I am stuck on the couch almost all the time, if I stand up too much my knee starts to swell and the percocet is making me weak/short of breath. I can't pull out the garden hose without taking a break to catch my breath. If I would have gotten the amp I would be much better off by now. I guess all I can do is wait and see what happens.
  24. Kender

    Plie 2 prosthetic leg

    One of the things I like about the plie is that it uses a camera battery instead of a built in power cell like the c-leg. The battery is a common camera battery that is found at electronic stores easy and cheap. You can keep one or 2 extras with you just in case your going to be out all day or if one dies. With the c-leg, even if you have a car charger, you have to sit and wait for it to charge. With the c-leg you are stuck with otto bock feet or else you void the warranty, the plie lets you use the foot of your choice.
  25. Kender

    Phantom limb pain

    Mikey, have the pains gone away or at least decreased? Hopefully things are getting better for you. DJ