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Heather Mills - Amputee Forum

Kender

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About Kender

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    Member
  • Birthday 05/26/1978

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  • Gender
    Male
  • Location
    Tampa bay, Fl
  • Interests
    Woodworking, kayaking, and guns

Previous Fields

  • Membership Type:
    Amputee
  • Amputation Type:
    Future Lak/disarticulate
  • Amputation Date:
    07-13-2009
  • Amputation Cause:
    Failed surgery/vein dmg
  1. 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. 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.
  3. 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.
  4. 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.
  5. 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. 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.
  8. 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
  9. 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
  10. 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.
  11. 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
  12. 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.
  13. 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. 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. 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.
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