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Karen

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Everything posted by Karen

  1. Hi, everyone WARNING...this is a very long and emotional post!!!!!!! I'm sitting here at the keyboard sobbing as I write....... I am looking for some advice.... Yesterday I returned home with Test Socket #4. Because the design is different than any I have worn before, I understood going in that it may take some time to get the proper fit. The fact that I need to travel over 200 miles (RT) each visit, adds to my anxiety. This is what has been happening so far: After doing some research on the web, I became very interested in trying the MAS socket design for AK's. My current prosthetist has not learned the technique and was not interested in learning it. So I did a search and found one in Florida who was experienced in it. I made a trip up there to consult with him and found him to be very personable, and up to date with latest technology. Casting was done, and I returned a few days later to try test socket #1. It was too large in many areas so he made lots of marks on it and set up an appt. for the next week. Test socket #2 was also too large (lots of air escaping), so he made further marks. I did note that I liked the way it was low in front and back with just the one "finger" shaped piece over the iscial bone....I didn't feel any pressure there. Ok, then there was the appt. for test socket #3. It was attached to my socket and I tried walking on it. It definitely did not feel right, and the foot was wiggling. It was not in proper alignment. But he asked me to take it home over the weekend to check the fit. I was so miserable that weekend....I could not walk straight and felt so unstable. I arrived for the next appt. at 10am and was not seen until after Noon. I would not have minded if things had gone right from there! Instead, he worked with the alignment for a while and then determined knee was not attached at the right place on socket, so he reattached it. I tried it on, and he told me to walk "carefully" because the adhesive may not be totally set. I took one step (no bars) and fell because the leg came apart! Fortunately there was a chair behind me. I was still shaking when he returned with the repaired prosthesis, and tried again. The alignment was still way off, so he moved the connector to another spot on the socket. That seemed better, although still not right, but was hard to assess because the socket was not fitting well (he had made more marks on areas to change), but I was so anxious to get out of there (it was almost 7pm by that time) I said I'd wear it for a few days. I drove home that night hoping it would be better in the morning (I know better than that!!!!). Next day I was in tears because I was losing suction and so uncomfortable. The back side of the socket was sticking out too, and I found it hard to sit, so I called and asked if I could please come in and have my old socket put back on while they make a new one with the changes needed. My prosthestist was away at a conference for a few days, but his assistant (a recent grad of Pros. school) said she could do it, that it was a simple thing. She reconnected it no problem, but it was about 2 inches too long. She then said there was no way to shorten it without cutting the tube. Even I know that if you cut the tube on a C-leg you can destroy the unit! Then she was able to get ahold of the CPO at his conference and he came to the office and fixed it. At that time I told them I need a break....was too emotionally upset to deal with any more and wanted to make an appointment in two weeks after I had returned from a trip. I asked him to make the new test socket with all the changes needed and to please set aside 2 hours to work with me. He agreed and I left there feeling very proud of myself for being assertive. Two weeks later (yesterday), I arrived at the office at 9am full of hope.... until the receptionist called the CPO on his cell and he told her that there was still some "prep" to be done by one of the guys in back...who was not in yet. An hour and a half later, I tried the leg on. He didn't even apologize for the wait....and then mentioned something about putting a piece of foam on the back so I wouldn't be sitting on the hard socket. I did note that the socket looked very different from before, but put it on. I felt a definite difference in the rear end....like my bone was sitting on something.....not like before, but the inside socket itself was snug and felt good. He had me walk around the office for about 10 minutes to check how it felt. I mentioned that the back felt weird, and he checked it and said everything was in the right place. Because I was walking pretty decent and not hurting, I said I was OK with wearing it for a while. He said a week, and I agreed (again, why did I agree to wear it so long!?). Before I left he took it back and wrapped more casting material around the bottom of socket, making the part just above the knee about twice as large as my other leg. It wasn't until I got home and took it off again that I notice what was going on behind me! Just above the knee was a huge lump extending out about 2 inches.....that's why my leg felt uncomfortable and "elevated" on the drive home. I started to cry when I looked at the back trim line of the prosthesis. Gone was the long finger type extension, and in it's place was a rounder, shorter version of it with a little "shelf" looking thing just below. This does not look like the MAS socket design I saw in the photos. The round piece goes all the way to the middle of my bottom...way past the the ischial bone....then the trim line dips slightly before going back up again.....again, not looking like the MAS socket at all. I put it back on and saw that my "cheeks" were not even either. I think the prosthetist changed the shape of the socket to an ischial containment one!? Not sure since I have never had that design, but from what I've seen and read, that is what it looks like. OK...... so this morning I woke up and called the prosthetists office. They were not in yet so I left a message saying I was not going to be able to deal with wearing this socket over the weekend since it is so uncomfortable to sit on (part that dips like a V in back is all curvy and sticks out ...that's where he placed the foam) and does not even fit into even my baggiest sweat pants because of all the casting material and huge lump in back. I asked to come in Friday instead. I have not heard from them yet....he probably has another "conference". At this point I am feeling hopeless that things will work out. I want to drive up there and grab my other socket (or have my husband do it!) and drive as fast as I can to another prosthetist!!! But then I am worried about financial obligations I might have for the test sockets, even though none of them fit. I am such a wreck! Has anyone else been in my position? Can you offer any advice on what I could/should do????????? Karen :-(
  2. Karen

    Osseointegration Part One

    Paul, I'm so sorry that things have not been better for you and your family. :-( Although I did not expect that you would go skipping off into the sunset, I had hoped you would have been able to walk "stick free" by now. But your attitude is outstanding, and the fact that you are able to wear the prosthesis and accomplish all your daily tasks and more is great progress! Will keep you in my thoughts and send healing thoughts across the pond to you and yours! xo Karen
  3. ATTENTION LADIES! You are invited to take part in our FIRST gathering of women (who happen to be amputees) in Florida! (and if you don't happen to live here but are visiting at the time, you are welcome to join us!!) Date: Saturday, October 6, 2012 Time: 10am-2pm Where: Prosthetic & Orthotic Associates (POA) 3160 Southgate Commerce Blvd., #38, Orlando, FL Organized by: Karen Hughes Dress: Casual/Comfortable This is a great opportunity for us to get together as members of our unique community for a day of fun, fellowship, and food for mind, body and spirit! After everyone has arrived and introductions have been made, Donna, a certified yoga instructor (who happens to be an above-knee amputee), will lead us in a session of adaptive yoga. After lunch we will have an open discussion of issues exclusive to women amputees - no subject will be off limits!! This event is open to ALL women in the amputee community with any level of limb loss and abilities. Please spread the word! The more, the merrier!!! Please RSVP to Karen at khughes@poacfl.com or call/text 407.721.3946 as soon as possible so I have a headcount for seating, lunch...and a few surprises. :-) http://www.poacfl.com
  4. Karen

    Osseointegration Part One

    Hi, Paul! It's been three years since your last post..... how are doing? Every time I hear or read something about osseointegration I think of you and hope you are doing well. Karen AKA Orlando, Florida
  5. I have a Genium, but don't know the answer to your question. Have you figured it out yet? If not, I can ask my boss tomorrow (he's a prosthetist). Hopefully you are good to go, but I don't like the sounds of a completely free knee for walking!!!
  6. Thought I'd share some great videos Ronnie Dickson, an AK amputee and prosthetic intern at POA in Orlando put together. One is "Amputee Biking" and the other "Amputee Running". They are very informative and well put together. Biking Running He also released an "amputee climbing" video this past summer. All three videos are available to see on POA's website blog (poacfl.com) or Facebook page (Prosthetic & Orthotic Associates) if these links don't work! Karen :-) AKA Orlando, FL
  7. Karen

    Need suggestions on Prostetic companies

    Hi, I met a guy at the recent ACA conference in Irvine, CA who works for "Advanced Arm Dynamics" (www.armdynamics.com). He had a prosthetic arm and it was very impressive, both functionally and cosmetically!! He works at the Texas location, but I believe the company has locations in other states which you can check out on the above website. I have no personal experience with this company, though. Take care, and good luck with your search! Karen ;-) AK Orlando, FL
  8. Hi, there I agree with what OBL said about the hydraulic knees. There are some very good ones out there, and with a through-knee amputation (also called a knee disarticulation) you will have more control of your prosthesis than someone with a shorter femur length. I can't tell you much about the four-bar knees except that they do fold up nicely underneath when sitting, but I don't know of anyone who uses one for running. Endolite, Otto Bock and Ossur all make some excellent hydraulic knees that I'm sure you'd do great with. That being said, both the C-leg by Otto Bock and the Plie 2 by Freedom Innovations are available with a special, shorter attachment for knee disarticulates. I'm also on the "short" side, 5'4", but that has not limited my choice of knees. If that is an issue for you and you really want a microprocessor knee, I believe there is an Asian company making one for shorter people....you might ask your prosthetist if he familiar with them. I've been an AK amputee since age 13 and have worn hydraulic knees for most of life, switching to a C-Leg after my daughter was born (10 years ago) because it offered greater safety/stability when carrying her across the lawn, on inclines, etc., but I always found it to be too controlling for me. Three years ago I switched to a Plie knee which is less controlling but still offers more stability than a standard hydrualic knee. If I were doing any running, I'd probably have a separate leg with hydraulic knee for that and any other higher impact activities as they tend to perform and hold up the best under those circumstances. If there is any way for you to try a few knees in your prosthetist's office, I'd urge you to do that. Some of the product reps will be happy to bring in demo units. Having never worn a prosthetic leg before, there is no way you can know what is best for your situation, which is where the advice of a good prosthetist comes in. Make sure yours knows you are more concerned with function than looks, and what activities you want to be able to do. PM me if you have any questions you'd like to ask me about my experience with different knees. Karen :-) AK Orlando, FL
  9. Karen

    plane journeys

    Sueflayy, LOVE your suggestion to use a shrinker as one of your socks! My limb always swells when flying. I am going to try that on my next flight (in 2 weeks) and if all goes well will be sharing it with others. Thanks so much!
  10. Hi, there I know a young and very active knee-disartic who once swore by the C-leg who just switched to the new Freedom Plie' 2. He absolutely loves it! I have the original Plie', and find it much less controlling and more natural walking than the C-leg. Have demo'd the Plie' 2 and it is even smoother. Ask your prosthetitist to see if he can arrange to have the Freedom rep bring a demo model out for you to try. Tried the newest Rheo a few months ago and really liked it. What would make me choose the Plie' over the Rheo would be that Plie' is water resistant and batteries can be charged independent of the prosthesis. I also know people who swear by the C-leg, such as bikers and people who do a lot of heavy lifting...it's probably the most stable of all the microprocessors. I really would encourage you to trial different knees though, to see which one suits you best personally. Karen AKA Orlando, FL
  11. Karen

    Planning for RAK amputation

    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
  12. Karen

    better foot

    Hi, Ribmaster I'd like to know more what your definition of "active" is (ie., for some it's running, and high impact sports and others it's being a busy person on your feet and moving all day). If you have the Freedom Renegade foot, it is definitely a high activity, high impact type of foot. For me, it is way too much energy for my day to day life, although I wouldn't mind having one for sports only. Would be nice to have that option! The Freedom Runway is a great all around smooth walking and active daily life foot, but I wouldn't run on it. Generally, most AKs I know tend to go with feet with a softer heel as a good all around choice. But if you are a big guy and put a lot of weight/energy into your steps, a higher activity foot might be better for you. Hopefully your prosthetist will let you try a few. Most manufacturers let you trial them for a month or so. Good luck!! Hope I haven't confused you! Karen
  13. Karen

    Sick of the pain!!!!!!!!!!

    Check out the following link/article on a doctor at Georgetown Hospital who is doing minimally invasive procedures with short down-time on amputees to alleviate nerve pain. One of the patients at my prosthetic office had it done and it's helped him. I know you don't want to have any more surgery, but it's an option if nothing else works and it gets to be too much. Take care... Karen AKA Orlando, FL http://www.news8austin.com/content/headlin...040&SecID=2
  14. Karen

    This should be interesting

    I don't feel the need to "defend" my choice to wear a cosmetic cover. It's definitely a personal choice, and should be accepted and respected as that. Have never had anyone creeped out by my prosthesis when they realize I have one... maybe it's not realistic enough?
  15. Hi, everyone! I thought I'd let you all know that, thanks in part to the excellent advice I received from Captain KB, I learned how to ski using my prosthetic leg (with microprocessor knee) while on a family trip to Lake Tahoe last month!!!! I can't describe the feeling of accomplishment and sheer joy I experienced when I was able to ski down that mountain with my two girls! I was lucky enough to find a disabled ski school within 30 minutes of our resort, and they helped get me set up properly. As Captain KB said, having the foot and shin/pylon positioned correctly was crucial to skiing successfully. We spent some time experimenting with pads, etc. The first day I used two poles with little skis on them to help balance and make turns. I was speeding down the mountain in no time.... what a rush!!!!! My next lesson was at the resort I was staying at. I wanted to try skiing with "regular" poles, so that took some more instruction. It was definitely harder for me to turn LEFT (my amputated side), but once I got the hang of it I did pretty well. Fortunately, since we had over 7 feet of snow fall that week, any time I did miss a turn and wipe out it would be into a nice fluffy bed of powder! I'm back home now, safe and sound, with lots of wonderful memories. I'd encourage anyone thinking about giving it a try to go for it! If your residual limb isn't long or strong enough to provide enough stability, there is alternative equipment for just about any circumstance! Below is a pic of my daughters and I after a run down the mountain. Hopefully it is sized appropriately, but if not, someone please fix for me.... thx. xo Karen
  16. Karen

    I am skiing again with my C-Leg!

    Since when does it snow in Orlando? LOL Be careful Karen. Have fun!!! I'm jealous. I need to get away, but I'm thinking someplace warm with pools and drinks with little umbrellas in them. Neal! It's really COLD enough for snow in Orlando... 28 degrees tonight!!!! But I will be skiing (hopefully) out west - Lake Tahoe!! Very excited and nervous, but just got some excellent advice from Capt KB that I will print and take with me. Will let you know how I do when I return, although I doubt there will be any video for youtube (maybe America's funniest videos!?)..... stay tuned... Karen
  17. Karen

    I am skiing again with my C-Leg!

    Way to go!!!!!!! So happy for you!!!! I will attempt skiing for the FIRST TIME EVER in a couple of weeks, so you have really inspired me! Think I will PM you for some advice! ... Karen
  18. Karen

    Happy Birthday Cat

    Happy Birthday, dear Cat!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Miss you guys. You know, if the ACA convention happens to be in L.A. next year, that's a bit closer for you, isn't it? ;-) xo xo Karen
  19. Karen

    Freedom Highlander Foot ?

    The Highlander has a softer heel, and is more popular with AK's than BK's because of that (BK's benefit from a stiffer heel). Don't worry, it has PLENTY of energy return and I think it would a great foot for what you describe.
  20. Jordan Thomas is a 20-year-old bilateral amputee who lost his legs in a boating accident 4 years ago. He started the Jordan Thomas Foundation to raise funds so that other children who need prosthetics and don't have the resources he did can get the help they need. To date the foundation has raised over $400K!! You can read an article with more about Jordan and his nomination for CNN's "Hero of the Year" award using this link http://www.cnn.com/SPECIALS/cnn.heroes/vote/ What I wanted to mention here is that there is just one more week to vote (thru November 19), so please take a look and vote as many times as you can! If Jordan wins this award it will bring awareness of the need for prosthetic insurance parity for over 2 Million amputees to a National audience! You can help make this happen! Vote now, and vote often!!! Thanks!!! Karen
  21. Karen

    A piece of news

    Congrats, Higgy!!!! You are one multi-talented lady!!!!
  22. Karen

    PROSTHETIC INSURANCE !!

    Marcia, mine just arrived yesterday.....not sure how their distribution works as you and I are much closer to Tennessee than others who received it earlier in the week!? Great article, Tammy. I think it's one of the best in the issue!
  23. Karen

    Help...need advice!!!

    Mary, A few more thoughts... Amy has just confirmed what I thought I had heard, that some Symes amputees can bear weight on the end of their limb, which can be extremely helpful as you wouldn't have to rely on hopping or crutches when your prosthesis is off. That would be a huge "pro", in my opinion. Ask the surgeon whether or not he/she does that type amputation and if it's a possibility for you. It would be interesting to hear what the answer is. Also, if you decide to go BK, ask the surgeon to put you in contact with some former patients with BK amps (as many as possible) so you can see if they are happy with the surgery or have had issues with it. Any surgeon can perform an amputation, but not all do them correctly. I've met several patients who are unable to wear a prosthesis comfortably because of the way the amputation was done. Your prosthetist should also be able to put you in contact with his patients who have had BK amputations which were done well.
  24. Karen

    Help...need advice!!!

    Hi, Mary You should be able to do all the things you mention with either a Symes or BK amputation. If I were you I'd ask both the surgeon and your prosthetist which method they would recommend for you and why, and what the pros and cons are. It would also be helpful if they could put you in contact with some active Symes and BK patients to get their feedback. Educate yourself as best you can. Knowledge is power, and will help you make this difficult decision. xo Karen
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