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unique

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Everything posted by unique

  1. Hi, help, I am planning a robotic PARTIAL knee replacment at HSS in NEw york this Summer and I would love to chat with someone who is an amputee who has gone through the recovery and get some tips The last time I posted this i got replies from non-amps and I really just want to hear from AMPUTEES, that is my problem, my doc does not know of anyone who has had this done. i have been an amputee for 27 years and the good knee is and has been giving me pain for 6 years now. I have been wearing one brace of another for about four years and having synovial fluid replacemnt therapy for three years. The shots are great but they only last for two months. So I am getting fed up with having them over and over and running intp problems with doctors getting reimbursed. So please if you have been through this or a full replcemtn give me a sign! Thanks Unique
  2. Hi, I have been away form the board for a while ANd I would appreciate any expereiences out there from people who have been through Knee replacments(Partial or complete) I have been fighting it for while with synvisc injections and they are great, but don't last very long. I have the option of a partial ? But I am scared and my doctor doesn't know any amputee patients He is at the Hospital for Special Surgery and I have confidence . The partial is done withrobotic CAD CAM job. Any input would greatly be appreciated from amputees. I have tried the local board. No luck yet! Cynthia
  3. unique

    swimming

    Hi, I rediscovered swimming 4 years ago I swim almost 4 times a week.It is So relaxing and it help keep off the belly!! At 47, Ihave been an amp for 25 years and it is the best thing I have found. It also is great because I can do it all winter . I can suggest investing in a pair or Fetterman tips. They are 30.00 or so BUT they are just like tires and have tread and well worth the investment. I never slip when I go to the pool or in our very wet locker room. I crutch in rain and snow with no fear, but a little caution! if you like try www.crutchguys.com When I am out at least oncea month an map stop me and asks about them!! Swim on! Cynthia
  4. Hey everyone, Just wanted to let you know that the SECOND Anuual Amputee Beach party is happening in Margate New Jersey, on July 21st through the 23rd. If you can't come why not organize your own in your state or Country .I had this idea for years because as a non user, having people stare and make comment is an everyday thing. But in a BATHING SUIT, that was tough (Bathing suits are tough for everyone I think) So I decided why not strut your stuff in the comapany of others?? There is safety in numbers! And it was a blast!!. There were about 8 othere attendees and I hope for at least twice that this year! We mastered that art of getting into the surf with old crutches and getting out of the surf with the help of the fantastic lifeguards and others. It was really a special day for me and I hope the others as well. Thanks to our hostess the wonderful Jonay we had a blast at the BBQ, and I think we all came away with the feeling that we were not alone. No matter how good the Consmesis is it does not change the fact that we are all amputees and we all have a little different body image. So if you can come , please email me and I will get back to you. If it is too far, or the wrong continent, have your own!! It will change your view on the Beach, just remember, sand and fancy cosmesis's do not mix! Take care, and keep swimming! Unique Everyone is invited to a BBQ and to spend time on the beach on the 22nd and there are reasonable eaccomidations nearby at the Sommers Point Residence Inn.
  5. Hey everyone, The first Annual Margate AMputee Beach Party was a BLAST. Six brave souls carpooled from miles around to the lovely home of Joani W, in Margate NJ on Friday night. Johnny V drove 5 hours and picked up 3 others and his daughter. Unique drove 3 1/2 (Luck of the traffic) and picked up a fabulous lady who was in her first year as an AKA. We roundevouded at the loveley home of Joani W and we got to know eachother. The next day we hit the beach,yes in our bathing suits, prosthetics and stumps. It was a PERFERCT DAy and the usually chilly At;lantic OCean was green and tolerable. One young lady form France put us all to shame as she crutched inot the Ocean and swam in the deep water like a fish. I was jealous of her talent and her thin figure. Jonny V crtuched in and gave it a go, Unique got toppled by a BIG wave and then went in. Yes I did. Even our newest memeber took to her crutches and swam. I was in awe of her, she was a great ride buddy too. The Gorgeous Lifeguards had to help us out,yes they were, (Don't try those sand wheelchiars in the water, they don't work) But we did it! Several times. The best part was as we were sitting there a man in a BK with a Chevy logo and a woman come walking by. I thought they were another couple taht had come to meet us. They weren't. They were just walking along the beach. When I siad hi, they realized that we were all amps, and the woman was dumbstruck! She looked around and said "ALL OF YOU?" The look on her face was shock.(you have seen it before eh) We all got some sun and plenty of sand everywere. Beware(sand is not good for lovely cosmetic covers)Then we had lovely BBQ hosted by Joani and her wonderful husband Steven, and we met up with another couple. Later the crew went to Atlanmtic City for some gambling and skin, and some went back to the beach. IT was a blast. After a goodby brunch we left with sore overeused stumps and sunburns and laughs. Make it happen, have a beach party this Summer. You'll love it, it is great not to be the only amp on the beach. Unique no more
  6. Hi Everyone, I have been an amp for 25 years now, and a non proosthetic user for much of that time. I have used a scooter on and off for work ect .In the past thre years my "good knee" has been getting worse. Last Summer the swellinng and pain was bad enough that I went to an excellent(maybe the gang knows by now that I am very skeptical about Docotrs) surgeon at NYU in NYC. He baiscically told me what I already knew BUT he surprised me ! He said he Never does Endoscopic surgery on amputees for arthrits and cartilage problems, because when they "Clean Up the inside of your knee, they also take out what cushion you have left in the joint. So he offered me a steriod injection" No thanks, had 23 of those for my Nueroma's in my stump". SO he gave me some very expensive antinflammatory meds MOBIC*, which I took and they definitley help but not enough. He also told me to get a better brace. which I did and then to come back when I was ready for a ............knee replacement! Oh _______ I said. So for the last year I have been coping, decreasing my driving and crutching, and I have kept swimming to keep off the wieght. Then a few months ago someone told me about the new artificail synovial fluid(JOINT FLIUD) injections. SYNVISC* They are made from Chicken fat and supposedsly you have three of them in a row into your joint and it helps tremendously. So I thought I will call my doctor. He said that he had not had conclusive proof that they help. No help at all really. So I thought Why Not? So I had one injection, it was GREAT, but I noticed that the articles I read said that the DOC should always remove existing synovial fluid BEFORE the injection. WHICH HE DID NOT DO Then I had the second one, not so great and my knee got a little swollen, no redness just swollen and painful!! On Tuesday I am supposed to have the third one?? Anybody out there tried these injections?? Or anything else for arthritic knee pain. Has anyone had a knee replacement ?? How long does reahb REALLY take. I am not happy it hurts . Would also like to hear from anyone who had a custom made CTI brace? They cast you for it and it will NOT fit under jeans only baggy cloths and I am trying to get a part time job and I ma fairly sur they will not hire me with a noticable brace on. Would love to hear from any of you with thesa problems. Thanks Unique PS My doctor was right, hopping will catch up to you!!
  7. unique

    sinvisc injections??CTI BRACE

    Thanks for your replies! Has anyone tried the Custom made CTI brace either before or after surgery?? Was it worth it?? Is it comfortable?? Unique
  8. unique

    im so scarred

    [Hi Claire, I just wanted to say that I have been to a similar place adn thoughtthe exact same thing, and I was wrong. I sevretly beleive that we are all a little overcome by our appearnace at first. Bu time does heal all wounds. I too thought no man would ever want me again,but I was wrong, over and over, this too shall pass. You are not ugy just different. I am unable to benefit form cosmesis, as I have been unable to wear a prosthetic for many years. So what you see is what you get. Yes it turns off some men, but as far as activities such as swimming go, what they think does not matter, please do not let the stares and comment (and there will be stares and comment all you life)stop YOU form living YOUR life to it's fullest. If everybody let what people think about the way they look govern what the did or wore, this world would be a boring place. Put on that swim suit (I swim at the YMCA twice a week) and be proud in the knowledge that otheres have done the same and that you are helping the next youg woman have confidence in her ability to face the world. Put on a smile, and do wahtever the hell your leg allows you too. Don;t miss a single second of life. Becaseu that IS defeat. You go girl.! Also, you said something very interesting aobut you current"Friend" who used to be your boyfrind. Many amputees saty with old, worn out reationships becaseu the are afraid no one lese wil want them.The pattern is VERY COMMON among new amps. Perhaps you should think about what it means that he has become your friend and not you lover anymore. In time you will come to your own conclusion. Good luck, face the world with a smile, it is still you oyster sweetie! Unique
  9. unique

    Need Information

    Hi everyone, I realy wan to find a good site for crutch accessorie. I ma dtying to find Shearling(white) underarm crutch pads and hand grips. Any suggestions?? Unique
  10. Hello everyone! I have had this idea brewing in my sub/something, for awhile now. Since we are from all over the world Wouldn't it be great if we could start amputee accessible " HOUSE SWAPPING" for lack of a better word. We all have homes that are somewhat amputee freindly or in some cases wheechair accessible. Most have wheelchair entrances,(SOME EVEN WHEELCHAIRS, ramps, shower seats, safety grips in the bathroom ect and parking, in different and interesting places. THINK ABOUT IT If we "swapped places" we could take a lot of the anxiety and worry about the accomidations and accessiblity! Think about how much less Stress it would be on us AND OUR FAMILIES! To know exactly what the accomidations are and that there is parking ect. Think about how much $$$$ we would save by swapping instead of paying for a small hotel. You could cook instead of going out all the time! Each individual would negotiate their own deal of course. For example, I live 24 miles from New York City in a lovely building that has a ramp, parking ect. I would love to visit Australia or England or Germany! Anyway, I just wanted to throw that out there, Anybody interested?? Unique
  11. unique

    Very upset!

    Hi Lynn, Yes it sounds if your surgeon blew it and I personally know the big let down and all about having doctors try to give YOU antidepressants why they screw up. But the group is right, find your inner strength again and study up on what steps can be taken to help you. Please do NOT let them try to suggest LIOSUCTION as was suggested to me. If at all possible, when another dctor is recomended to you, then ask a third doctor about him First. Watch the doctors expression carefully, because they rarely will say anything bad about eachother! But the face doesn't lie. I also want to thank Liz for her story, it really puts my trials and tribulations in perspective.Her Quote is SO Great. You cannot be angry and greatful at the same time. You can do it, try to find out as much as you can about any surgeon and interview him. Ask how many amputee he has worked on and WHAT KIND . Remember they work for you not vice versa, and yes, find an ally to help stick up for you.. Best wishes Hope you feel beter soon. Unique
  12. Hey Johnny, This is a story woth crowing about, good job poukeepsie group and Johnny!
  13. unique

    Hello! ...choosing to amputate is tough!

    Hi Roz,\Unique here again, Thank you for the lovely thoughts and I ma glad that I could ehlp you see things in a different way. After reading my post I wanted to add a few things if you don't mind especially in the preopertive pain prevention area My ex -husband is a certified prosthetist(an excellent one) and he was the one who began telling me about the strides they have made in preventing pain with preoperative epidurals, these days. In many ways you are in a very unique(Pardon the pun)and eviable position to save yourself and your family the hardships of dealing with acute and the possibility of chronic real pain or the psossibilities of phantom pain or sensations. (I have been an amp for along time and it does get much better, the first year is the worst) Another amp mentioned that she was on IV painkillers prior to her amputation due to her other injuries, that method works well too, but that is not what I am advocating to you. There is a difference between the standard IV pain meds and the placement the Indwelling epidural (In your spinal chord) for at least three days prior to amputation. As I said in my prior post, please contact a pain management specialist WHO HAS DEALTH WITH AMPUTATIONS BEFORE and don't take OH well I have heard of it before as an answer. Do this NOW for your future , you have been through so much _____ you decerve to have the best shot at a real mobile recovery. Swim on , Unique
  14. unique

    What is your hobbie?

    I like to bake, cook, swim, swim, movies, and oh yes, the beach and anything outside that I can do. I read too but . Unique
  15. unique

    Hello! ...choosing to amputate is tough!

    Hi Roz, I am unique, I am so touched and feel such a kindred spirit to your pain and tencacity and determination to make a bad situation work, It just blew me away. That decision was made for me, and I became an above the knee amputee 23 years ago due to a motorcyle accident. The way you are describing the situation and your excrutiating pain, and lack of mobility, to me amputation seems like the right decision. If you can make it through the past year of hell you described, then you can make a scucess of your amputation. I have met several people throughout the years that have made similar decisons for similar reasons and without fail they are very happy they did. I am not a doctor, but barring any other probelms you will get back you mobility if you work hard at it. I have a suggestion to keepin goff the weight (a problem for many amps, start swimming as soon as you have healed up. IT burns calories and help maintain range of motion, it has kept me fit in my 40's You mentioned that your father was a doctor, and I hope that the doctors caring for you are going consult a pain specialist. IT sounds like your pelvis?? is a problem as well, so be careful pushing the weight bearing There is a whole lot of evidence that preadmission into the hospital for an long term(3 days) epidiral to numb the nervous system can prevent a whole lot of pain. Please Please talk to a pain mamagement specialist before you have the amputation about having an epidural done first. Keep in touch, We are always here for you Be strong as you can and then lean on us. Bye for now Unique
  16. unique

    back after a long time

    Hi patti, We are here for you, it is a long journey but you can do it.! Unique
  17. unique

    this is what my phantom pains look like.....

    Hi all Those are some picture ou guy put up. I don;t know how long you have been amputees, different time periods I imagine. For me the phantom pains got much better aftera about a year and every year thereafter they subsided. ZBut I still do get them 23 years later just not very often. From what I gather, one thing that hasn't changed is that they are still like hot pokers. Great pictures I have said this before but there are two topical over the counter meds that help me considerably. Capsasin and any cream with lidocaine in it. The Capsasin cream is made form pepper and it has some magical chemical in it that intereferes withthe chemical that transmits pain to the brain. Muy stump used to be so tender that I couldn't even get into the tub because I couldn;t take the pain. Now I swim!!!When I do get them, I massge and rub the stump gently or I have a beer or two and I take ahot bath.If they persist I take a muscle realxer, it is not a crime and just becaeu we take them doesn't mkae us addicts. I challenge any normie to be an amp with phantom pain and not die to take something! IF they persist and interefere with your normal sleep, ask you doc for a muscle relaxer, such as Klonopin or flexeril, because your body's normal response to any pain is to tighten the muscles and that perpetuates the problem. What most amps don't realize is that we flip and moan like a fish alll night(ASK your partner if you have one) Yes they will make you drowsy but they wear off by the morning and you will sleep. Hope this helps, unique
  18. unique

    Snowboarding

    HAHAHAHAHAHIIOOIIOIOIOII I Snicker sbnkcer, normies are so much funn. EXVELLETN SOTRRYYY Unique One of the best in a lOONG time!
  19. unique

    Having a bad day

    Hi kerrie, I hope by now your husband has been to see the pain specialist, he cna probably be your best ally in helping your husband accept and support you having the epidurals I beleive that the epidurals can be very benefical to long term pain control I guess what I don; get is waht your husbands objection is? It sounds like (and I ma not there) he is having trouble dealing with this whole situation and he feel that soemhow he has lost you. We really need a web site for family memebers too!! What the other memebers have said is true, you and he will expereince a whole new group of firsts, but acceptance taked a long time.Perhaps your family or his could try to speak to him about his feelings. I have heard many men say that they have "Failed in some way beacuse they could not protect their spouses from the amputation, and that once all of these doctors and specialist have imposed themselved in their lives and they resent it. Often the husband and other family memebers loose their feelings of importance , like the situation is out of control. Maybe you could both go to couceling together. As to he methadone not working, you tried it and you are the best judge, if it doesn't work then don't take it. Again, I strongly urge you to try Klonopin too. Just keep trying and I hope you also try the Epidural, it is your body and your pain. It will get better, and you will find ways to do your housework and have alife. there is hope. Unique
  20. unique

    Having a bad day

    Hi Keri. Unique checking in here, Right AKA 23 years. The first 6 months of my amputation were horrible, pain, pain and more apin, no sleep and I too thought I never make it. But I ma still here and still kickin, and I still bleive in pain medication and I bleive that your pain is real and needs teatment. I think the most important part of this whole coversation to me is that everyone is biologically different. We are not the same , each and everyone of us is unique and you are not alone! Please do what is best for your mental health and pain, and it cannot help but help you marriage. It sounds like your husband is buyng into a common misconception about pain, it is "IN YOUR HEAD and he is probably being fed a lot of BS by doctors who do not want to prescribe the meds, and he loves you and he is scared. Does he sleep inthe same room as you at this point? Does he wake up with you when you cannot sleep or do you let him sleep? Are you hiding your pain as I did form my spouse? I suspect that we all do hide our suffering and that part of the reason our spouses don't get it.( I would love to hear form the group on this one! How many of us HIDE our pain form our family and spouses??? I have a few proposals, Have you had your amputation X-rayed lately? or an ultrasound performed on the soft tissue.? It could be the case that you have developed a nueroma or a bone spur, which can all lead to "Phantom pain" Is the pain an intense tingling or is it spasmodic(mucle spasms.) One of the best medications I have ever found was Klonopin, because pain in whatever form, causes muscle spasms, which keep you up all night, whether you are aware of it or not. If you are only on pain killers (methasone, morphine, vicodin) and no muscle relaxers I strongly urge you to try requesting them. This is a long established treatment for amputations and chronic pain. As the others have said, take your medication and trust your pharmacist , they have no stake in telling you the truth. Then take a hot bath and relax. The first 6 months are the worst, it will get better, but it will not go away completely. Keep in touch. I wil always be here to talk, Unique
  21. unique

    PREGABALIN??

    Hi Sue, Hope it is going better for you by now. I just read this thread, so I may be out of sinc with the rest of you: I am sorry you are down Sue,I've been an amp for a long time and you have every right to be, but you are not alone out there! You have been through a horrible time, and are now coping with probblems with your other limb. All of us will face this issue sometime in our lives. For most it will too soon, that is just reality. It is very hard to stay up and positive when you are facing Phantom pain night after night with no relief! Have you tried a pain specialist?? A doctor who only deals with your pain?? They are often very well trained in meds that help phantom pain. Many amputees face a lot of pain and frustration trying to get back to normal. Not all of us get right into a leg and stayactive . My hat is off to those who do, but that isn't always the case. Doctors and drug companies ,BOTH push dud drugs and many a helpful drug on amputees. Doctors do it because we ask for something for the pain and they don't want to prescribe painkillers. The hospitals and doctors get perks, such as computers, TV's furniture grant money for projects. While the drug companies and their stockholders are making tons of money!! They also target us for anitdepressents ECT,. mainly because we talk about our pain and many of the docors think it is in our heads. Unfortuantely although many other aspects of being an amputee have really improved, I think in this area we need improvment. Especially for the young men and women coming home form the war who have almost all had traumatric amputations, and usually have a lot of phantom pains. Good luck Sue Unique
  22. unique

    Checking in

    Hey Brenda, Even though I don't post much, I have wondered were you were. I am Sorry to hear about the divorce, but it sounds like you have come to a decision and are moving foreward. I think it is always a very tough and brave decsion to make when you are a woman with an amp. I know it was for me. Congrats on loosing the weight, that is quite a lot of weight! Keep it going (away) and going back to school is always a good thing. I am considering it myself! Unique.
  23. unique

    OLD amputee with a NEW problem

    Sorry Betty, Welcome to our site and I hope you post often! Unique
  24. unique

    OLD amputee with a NEW problem

    HI Betty, I have been an AKA amp for along time as well. Unfortuantely, I think I may know what you mean. I have had nueromas inside my stump injected with drugs 32 times and revmoved surgically about 6 times, and probably as a result got a condition called RSD or Reflex sympathetic Dystrophy, a fancy name for nerve damage. There are many articles NOW about it, but when I got it the doctors knew very littel about it and did not believe me at all. As a result, I suffered for 10 years, unitl I found a Pain specialist who diagnosed me.As a result, I cannot tolerate a prostheisis and have been a nonuser for 13 years. My pain is inside my thigh as well, constant intense throbbing, tingling, muscle spasms, lot of fun. I was also told later that the neuromas were the problem and needed to come out, the problem is that a nueroma is baiscally nerve scar tissue. So when you cut the neuroma out, the normal response is to grow back. Please . please ,I cannnot urge you enough to NOT let them do anything else surgically to your stump, and find Dr. who specializes in pain management, ususally a nuerologist or an anethesiologist. You can look them m up in your local directory and try tot find one that deals with amputees. If you want to talk more, email me and I will be happy to respond. Unique
  25. unique

    Messages for Martine Wright

    Hi Maritime, I am not sure when you will read this, but as I watched the tele, I wondered who had been hurt and I knew soemone would be an amputee. I am so sorry that it had to be you. All of my love and wishes go out to you. I lost my leg in a motorcycle accident many years ago. Exactly how isn't important. I am 43 year old right AKA and I don't use a prosthesis. I use crutches and some well placed chairs. I liken loosing a leg suddenly to someone taking your favorite puch bowl(your life) and tossing it off the top pf the refrigerator. It breaks into pieces, some pieces shatter and they will never be the same, and you grieve for them for along time. Later, you fill in those pieces with new things, people and activities. You learn new ways to walk and do things. Others pieces are left whole and those you can use them to make the new punch bowl back together, one day you will I promise. I really want to hear form you about your progress, please get on the board when you feel up to it. Unique I use crtuches and I have avery nice life. , byt and I know this sounds sorny but God doesn't give you things you can;t handle
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