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Heather Mills - Amputee Forum


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Everything posted by CaptainKB

  1. CaptainKB


    Hey, I have not been here in years but thought I would drop in. I have had a revision surgery, two denervation procedures and tried numerous meds for my nerve pain caused by neuromas with som RCPS thrown in for good measure. I had the Neurvos Medical Device implanted in March as part of a trial. I figured what do I have to lose, I tried pretty much everything else so I signed up at one of the many participating hospitals in the U.S. and I am now on the therapeutic frequency that literally blocks the pain signal just above the problem area in my residual limb. So I never receive the pain signals in my brain. And no, it's not the same as the type that is implanted in your spinal column, this is a lead that is wrapped around the peripheral nerve. It is much like it though as in the battery/device that is in my belly that needs charging every few days. Weather patterns with high electricity values used to screw my day/days but now I do not even flinch. The first pain-free days since the day before my limb loss, almost 10 years ago. Cheers! Captain KB
  2. CaptainKB

    Medicare and Obamacare

    Fifty amputees went to D.C along with Otto Bock V.P. They met behind closed doors and talked with congressmen and women. This IS part of Medicare and was brought forth as one of multiple ways to save money to help pay fro Obama Care, this is a fact. Not a law or a bill at this point, yes that is true, but could have been put into the last budgets which included medicare. Insurance follows what medicare implements, so if this was, or will be passed than we there will be smaller CPO operations that will be forced to close, based simply on economics. There is no mark up on pin socketry and entry level knees and sach feet, and that's what the industry would become. Your point of being safe, you are spot on! Your comments are all right on point above member. People say "no this won't happen". Yeah, sure it won't. The only thing that will save us is a change of the guard and most portions of Obamacare repealed.
  3. CaptainKB

    Medicare and Obamacare

    Check your political affiliation at the door, or simply ignore this post. Thanks to Obamacare and to save money in the Medicare system, Congress has been sent a bill which I am sure all of you know of that will bring prosthetics back to the 1970's. If your prosthetist states otherwise then he is either lying to you, or he/she doesn't get what the bill is about. I am sure they are fully aware since it is their livelihood If this bill passes, 70% of leg docs in America will close shop, plain and simple. Scary? yes, possible? yes. We were able to get over 400k signatures that were sent to DC to stop this bill, but at this point according to my sources at Otto Bock, no decision has been made. Otto Bock as you can imagine has a lot to lose, like 70% of their sales worth. Otto Bock for their efforts asked 50 amputees to go with them to D.C to speak in front of congress, after the meeting I was told they went to Medicare, and after that there was a closed door meeting. I asked my Congressman and his office, nor does Otto Bock have further information. To quote an Obama administration Medicare official, “If they want the high priced and unnecessary computerize legs, let them pay for it themselves". This was stated months prior. These people are finding ways to save money to help pay for a failed Obamacare program, this is a factual comment and not mine in any way. My prosthetist has been around for 40 years, an inventor of items, some of which thousands of us use every day to help us lead a better life. He flat told me that he will close 2 of his locations, be laying off half his staff and that 70% of mom and pops will shut down and for the most part, only the large nationwide companies will survive. So why did I post this? To scare you? Yes, indeed that is why, because we are 2 million strong and your silent voice will not help! Call and write you Senators and Congressmen and women. Tell them why you need the prosthetics that you use to live everyday life. The administration is stating that a leg with a suction socket, or a knee, or a liner is not needed. Tell them why you need these things. And if you feel you do not want to, or it's too much trouble..........look at what prosthetics looked like in the late 70's. I kid you not, that IS the model that is being used. I hope and pray this does not come to fruition, but with everything else going on, it is most certainly not on top of our administrations lest I can assure you. Captain KB
  4. CaptainKB


    The newest C-leg costs my leg doc $19, 700. The latest Plie 3 cost my leg doc $18,900. I was also told that because of the amount of C-legs one orders, has to do with the cost, just like in any supply and demand business. This is cost, without mark up. The Ossur is most likely closer to the C-leg cost. Carbon feet? There are so many, For a spare the best thing to do is buy one on ebay for a couple hundred dollars. And Otto Bock will ONLY repair knees that are within the repair time frame and ONLY repair those knees for the same person that initially had it scripted to them. Do not let anybody tell you otherwise, they are not being truthful.
  5. CaptainKB

    What prostheses do you use

    I should have also noted that many leg docs do not do the vacuum system because insurance does not cover it as easily as they do the pin sockets, especially now days due to Obamacare/ACA and the recently updated approval codes based on Medicare. First step is to find a "good" doc with a proven record of vacuum use. Then he/she will let you know what your primary doc has to script < most important part. The rest is to build the system. If you are going to do it, do it fast. The recent medicare code changes have been temporarily stalled thanks to 50 amputees and the Otto Bock team that went to DC to talk with Congress and had behind the door meetings. This could change. Good luck.
  6. CaptainKB

    What prostheses do you use

    What part of the world ,country do you live?
  7. CaptainKB

    What prostheses do you use

    Hello, what is good for one amputee may not be suitable for another. I use the latest Otto Bock C-leg and have used the c leg since my 2009 amputation. I have also used a ski knee for skiing, I've used a non computerized knee also for other uses other than just walking. I have used over 15 feet and the foot really is a personal choice as to what attributes you are looking for. I have used elevated vacuum the entire time I have been an AKA. The company that didnt give you an explanation simply doesn't do them, that's why. Elevated vacuum is an art when done well. I am lucky in that my guy was in on the early years of vacuum and actually helped design pump motors, etc. You can email me for more info. message men here first if you are interested.
  8. Methadone is a very clean and cheap drug that after exhausting most drug therapies, I had to try by the wishes of my pain doc. Your pain and mine, the cause are not the same, but I always tel people what save me from the terrible nerve pain I have. Good luck to you and Steve is correct that you need to exhaust everything first. I tried 20 plus drugs, TENS, OTC ointments and nothing worked until I finally found the one thing to allow me to live pain free, except when electrical storm come in. Ouch Cheers Kirk
  9. CaptainKB

    Funding to visit hanger USA

    I am very sorry for your pain and suffering sir. I hope and pray that you get well and the help you need and deserve. Government healthcare is a terrible thing and unfortunately soon in America we will be in the same boat based on a bill that has hit or Congress. Hanger receives letters from folks like yourself often, I am sure they have helped many folks but be patient and never give up.
  10. How you like the rush foot. I love the Rush foot! I have had many diff feet, the simplicity of the foot and the way it moves with me is awesome! It is a softer foot than what I am used to, but that takes the pressure off my stump. It does everything the most sophisticated feet do, but with out the weight and the probability of anything breaking.
  11. CaptainKB

    Do I have a neuroma?

    http://www.netdoctor.co.uk/drug-abuse/medicines/methadone.html Above is a UK website on Methadone for pain and who should not take it. I will add that I took all f the Tramadols, Codienes, and all the others that made me extremely stupid, including ant-depressants and what I called MOROntin, for Neurontin. All had no affect on my nerve pain. Good luck, if you do look into the surgery, make sure you visit a micro or plastic surgeon and not am orthopedic doc. If they do not wear magnifying glasses on their head, don't bother. Bless you
  12. CaptainKB

    Do I have a neuroma?

    Hello, I am an AKA and had revision surgery myself in 2011 due to nerve pain and scar tissue. I am supposed to have micro surgery performed in a few weeks by a plastic surgeon to my distal end but I am having second thoughts. I need to weigh whether or not it will be worth it. Will it do nothing? Will it help? Will it make it worse? My pain doctor summed it up this way. 33% it will be the same, 33% it will get better and 33% it will get worse. I had many, many drugs that I have tried and I will tell you that finally I was given an extremely cheap drug that makes my nerve pain vanish; your mileage may vary however. Twenty minutes after I was given a very low dose of methadone my pain went away. The doctor explained how a certain mechanism in methadone actually blocks the pain signals in the brain that produce pain from nerve signals. Yes methadone has a stigma attached but I simply would not wish to live with the pain I have without it. I still take the original low dose today 2 years later. I work with analyzing financials and it does not affect my cognitive ability. So I fell down our stirs at home tripping on one of our pooches and injured my leg and my doctor asked me if I wanted to see a micro surgeon, the same docs that do breast implants and restorative surgery for amputations. He stated that he would go in and try and find the nerve or nueroma that is causing the pain. The key word is try. As he stated there was no guarantee, just as my pain doc stated that I mentioned. No sure if this is helping you at all but I would try EVERYTHING prior to having surgery. That is why I explained what has helped me. Indian doctors are more inclined to script Methadone since in India; there is no stigma because there is no heroin addiction there. And because it is dirt cheap, but it works. I am going to talk with my wife tonight and make a decision on the surgery. I will let you know if I have it. Good luck to you, I know how bad nerve pain is and I di try over 15 medications, the gold standards and denervation injects, all for not. Kirk
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  14. CaptainKB

    Car Rental

    I have one and bring it on my business trips. Usually I am picked up at the airport but there have been times where I was forced to rent cars due to very long delays ,etc. They come in handy
  15. CaptainKB

    Otto Bock SiOCX TF socket

    My doc works closely with one of the labs in Minnesota that makes these. The good thing about these is the ability to integrate an aggressive sit bone piece that is flexible and gentler to the skin and tendons. I am very sensitive to the knife like carbon digging into my skin. He made me basically the same thing but with a new inner wall liner called an EMS system. It is used with a vacuum system. These run in the area of 15K for the socket only
  16. CaptainKB


    This is of course the last resort for most people that have suffered this type of non-healing injury and a hope for a better life. I would like to add that a doctor making the comment that you will have a "pain free " life after amputation. Many do, but knowing what I know now, I would have had my initial amputation done the way I had my revision surgery amputation performed. I would highly recommend reading about the ERTL procedure. There are posts here and you can simply Google ERTL for more in depth information on the procedure. My avatar shows the results after of my revision which was an AK ERTL. I am able to ski on two skis and am mostly pain free. The real ERTL procedure is mostly performed for BK's. It is very important that you do your homework on the surgeon/surgeons well before your operation and insure all proper steps are taken to mitigate future pain For instance, I had really bad phantom pains after my initial amputation. For my revision, I had an epi-morph so my body would not feel any trauma during the bone, nerve and muscle cutting. This may not work for everyone but it sure did for me, no more Phantom pain. I do not mean to make you worry, just wish I would have had the chance to seek advice and to research a bit prior to my first amputation but I was unconsciousness and it was a life or death matter at the time. When I hear a doctor give a broadbrushed statement "pain free" it just annoys me.
  17. CaptainKB

    Surgery scheduled in two days

    For 300 USD installed you can have a simple device installed on the cars floorboard, it allows you to drive with your left foot. If I had my knee i am sure i would be using my right leg to drive with no device. I would have just used my left foot to drive as Gibby pointed out but i have size 14 shoes, just wouldn't work. You can also order this part for around $200 USD and install it yourself. It took me about 20 minutes to get used to it.
  18. CaptainKB

    DIY alignment

    I adjust mine frequently and was taught to do so by my leg doc. Last week while on business in Atlanta, I had two major breakdowns happen at once. 1. My 2008 C-leg died, just froze up like c-legs do when they go out to pasture. 2. My temp test socket came loose from the aluminum connector (connects socket to c-leg) not the screws but the casting wrap itself. - Home depot 7,3 miles from hotel. - I always bring another knee with me, in this case my 2013 c-leg. - Off to The Home depot to buy Fiberglass resin, cloth, hardener and quick dry epoxy. - I took the socket off the old c-leg and applied fiberglass cloth and resin to fix the socket issue. While doing this I was charging my working c-leg. Took off vacuum pump from the non-working c-leg and connected to the working c-leg. Changed the foot out and adjusted length to match the old set-up. - After 2 hours the resin was set and I was able to reassemble a "whole" leg. The main adjustment for a c-leg is to put the shoe on and draw an imaginary line straight down the middle of the socket and insure that line goes to the second eyelet of your shoes. That will insure that the toe off for a c-leg or any knee will not release too early. - Now it's a question whether you need lateral or interior adjustments (left to right) . Lastly adjust the foot. I would not recommend anyone tearing apart your set up and going to town.. if you have a back up you can play around, or if you have a leg doc that is willing to teach you; If I had no clue what i was doing I would have had a terrible experience being so far from home. As it turned out , I only was out of commission for 6 hours I did get some strange looks as I smelled like resin and mineral spirits while going through the TSA at the airport. Now if my leg doc can separate the socket from the connector. Having some knowledge about adjusting prosthetic components is critical for travelers.A three prong hex-head bicycle tool is a must.
  19. If it works for you, who cares right. This is just the NEXT step of technology simply using the materials that are already available and making something better (for vac patients). I was the second one to receive this and the first is another highly active AKA that is also a long time member here. I guess I am just a bit spoiled by who my leg doc is and his proximity and relationship with the inventor/manufacturer. I can see many people that either have, or may have vacuum in the future really liking this, especially those that are very active. The new liner is also made with a one way hole/escape route for perspiration to then make its way out of the pump tube at the shoe level. Could make for some smelly sneakers!!! I am also testing the new Rush foot as I am up for a new one. Talked to some folks that have on and they really like it for ramps (me at the airport) and its lack of dead spots. Everyone's mileage is a bit different so i will see for myself. I really like my Soleus but there is a dead spot that I feel makes me spend too much energy as it does give me the toe off I am looking for.
  20. CaptainKB

    Ertl Amputees

    I had mine two years ago, not a true ERTL in that I am a AK but by the ERTL's
  21. That's great news. I read about this on-line. I volunteer for the SEWASP South East Wisconsin Adaptive Ski Program. I was a volunteer ski instructor prior to my accident and was able to work with our ski area to bring the adaptive program in. Now there are two programs in the state. That's me post accident in my avatar. AKA with a X-T9 knee and a C-Leg shhhh don't tell Otto Bock Keep up the volunteering, it's a great cause and our program id free to the participants and their entire family.
  22. I have not been on here for quite a long time but have some good news on new technology that I am now using If you haven't heard of the EMS socket system, you will soon. I was the 2nd to receive this new inner socketry. First being a 40 year amputee BK and me being a 5 year amputee AK. Think of a golf ball and envision what the cover of a golf ball would look like inside out. Think dimple out or raised dimples. Your cast the same but the end result is a pliable socket thousands of "raised" dimples (oxymoron I know). Once my leg doc receives this piece from the manufacturer I am cast again while wearing it. When I came back the next time the socket is complete and in one piece. The inner socket is epoxied inside the carbon socket. I also use a proprietary pump system. Here is what is so cool about this new socket: The thousand of raised areas create a larger surface mass, 60% larger mass to be exact. Now I have a much larger area holding vacuum on my stump liner. The raised area also acts in a gripping fashion and the combination creates hold that I have never felt before. There are now about 15 of us on the globe with this new tech. They are designed by an amputee business associate of my leg doc and are now being made by Otto Bock I'm about 5 months in and the socket feels more part of me and the vacuum hold is amazing
  23. CaptainKB

    AKA ERTL Revision Post Surgery

    It's been 12 days since my surgery and I go to have my staples removed in 3 days. My initial amputation and recovery occurred during a 31 day stint in the hospital and my recovery took place under very heavy sedation. This procedure however was quite painful, even though I had a morphine pump. I was in the hospital for 4 nights and was very happy to get home to my family. The doc removed between a golf ball and tennis ball size amount of scar tissue (his words) from the bottom of my stump. He removed the bone spurs and capped/sealed my medular canal. He also attached muscles that were not attached during my initial amputation. He finished up by removing 2 nueromas and burying the nerves in muscle. The procedure was 3 hours. I am hopeful that the revision will allow me to be able to wear my prosthesis with much less pain than before. I have a few weeks before I am fit for a new socket. I will keep you posted. Thanks
  24. I've had my prosthesis since 5/1/09 and my ultimate goal was to ski and teach skiing again. I've realized both goals over the last 35 days. If you don't like hearing doctors or prothetists telling you you can't, fire them and find new ones! Here's a YouTube url of my C-Leg in action. Toby have you gone out yet with the X-T9? I'm getting that leg next week and will have to learn how to ski all over again. Oh well! Let us know when you get out on your board.
  25. CaptainKB

    Happy B'day Johnny!

    Happy belated birthday Johnny!