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charu

HD amputee

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Hello. I am 25 year old Indian female living in the UK and have had a right hip disarticulation since I was 18. This was due to cancer and while I have been free of it since (I refused chemo) I still get very depressed.

I gave up any attempt at using a leg after a nightmare of trying and get about with one shoulder crutch or wheelchair. I get sick of the automatic assumption that we should all cope with legs. For me at this level of amputaion, it just does not work. It is difficult to share experiences with others with the same condition as it is quite rare I think and often I feel I have little in common with other amputees who seem to just talk about legs!

I often am made to feel a complete failure for not using a leg but frankly I get about really well and a lot better than those I have seen. I just wish people would respect my preferences for mobility and not keep on about it.

I would really like to communicate with any body else who has the same amp level.

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Hi Charu,

Welcome to the forum! I haven’t been here in quite a while but I did see your post and your message. It is a pleasure to see another hip disarticulation amputee on the board. Yes, we are rare! That is one of the reasons I haven’t been on the forum much. It will be 6 years since my amputation on February 10th. I was 42 years old when my leg was amputated and I am now 48.

I certainly respect your decision to not use a prosthetic. It is a very personal decision and especially for hip disarticulations, it can be a very challenge process to use a prosthetic leg. And I completely understand your reasons why. I almost made the same decision because I had walked on crutches for 15 years prior to my amputation and I had become so good at walking on them. It just seemed so easy just to keep using crutches. I do use a prosthetic leg now, but it is not always easy. I do enjoy the liberation of being out of my leg and walking on crutches, but I also enjoy being able to use my prosthetic and have the freedom from the crutches. For me, there are advantages and disadvantages to both worlds.

If you feel more comfortable in not using a leg, then by all means that is that is what is best for you. The most important thing is for you to be happy, healthy and cancer free! But I would encourage you keep an open mind for the future. You are still so very young and there are so many new advancements in hip disarticulation prosthetics that have come out just in the past 6 years since my amputation. They are becoming more comfortable and less tiring to use. Your young age is definitely to your advantage!

Please feel free to private message me again. I look forward to getting to know you Charu!

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Dear Chissy

Thank goodness a response! You are the first person in the same boat I have ever managed to talk with! I went from being fit to a small painful lump near my knee and before I could take a breath my leg had vanished. I have only ever used the one crutch and can keep up with everybody else on it fine.

As a HIndu, I had big problems at the limb centre as our level of amputation is so very personal and no one ever understood this. I would never ever go through that again. There was no transcultural consideration whatsoever.

I saw young men walking with limbs there but I move very much quicker and better than they do and I can even do it in a high heel! Anyway, thanks for responding and I PM you.

Charu.

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Hi Charu, I don't have the same level of amputation as you and do respect your decision for not using a prosthetic, in many ways can understand that decision so am really sorry if you have, as you say, "been made to feel a failure for not using a prosthesis", not sure if you have been made to feel this way by other amps or people generally, but would say, from experience, that there is a lot of misunderstanding around amputees and prosthetics etc. etc. and sometimes people say things they are often totally uninformed or ignorant about.

I am reading also what you say about the problems you had at your limb centre regarding your culture and your level of amputation and the personal aspects etc., and knowing how the situation works in some centres can understand this. Though wonder if you raised these issues with them, perhaps with the centre manager or rehab consultant, as know if you don't bring things like this to their attention they prob wont realize its a problem for you. I have always found the prosthetists etc., very discreet, but even without being of your culture, I and probably many other women amputees reading this will be able to understand somewhat how you feel. These days though, many centres have female rehab consultants, female prosthetists etc. and also some centres see people individually at individual appointments, so its always worth talking to them if you are uncomfortable about anything.

Again, and not trying disrespect your decision, but if it was the problems at the prosthetic centre that formed main part of your decision and they couldn't or wouldn't help you, or perhaps, you didn't feel you got anywhere with the prosthetic side, you could try another centre. We do have choice, as far as I know, we can go to any NHS prosthetic centre, although you might have to get your GP to refer you, its usually quite easily arranged. To be honest if my amp was at your level I'd be wanting to go to a centre that had prosthetists experienced in fitting that level, because it is more specialist, there are not so many HD amps as perhaps below knee amps., and at some centres this is probably majority of their work, so a new qualified prosthetist might not have that experience, again its not always easy to get the input you need, but sometimes worth pushing for. NHS England now commission prosthetics, so should you be unsure, it might be worth contacting them direct.

No one wants to use an uncomfortable prosthesis and but know that starting out on a prosthetic, whatever level, isn't always comfortable to start with, many of us have to keep going back for adjustments and refits. It can be a pain and inconvenient and if you are used to getting around quickly it will be frustrating having to suddenly slow down and get used to walking with a prosthesis, but things usually get easier as time goes on and having been around many prosthetic centres over the years have met quite a few people who are at your level who have been quite successful with using a prosthesis. So as Chrissy says "keep an open mind on that" and also bear in mind that whilst using crutches and one leg is quick at the moment, as we get older as amputees (as I am finding out) the wear and tear on our bodies can become more of a problem.

Do wish you lots of luck ...... and you can wear heels with prosthetics, and you don't 'have' to wear trainers all the time, just let them know thats what you want, if you want heels!

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Hi, Charu, and welcome to the Forum. I'm glad that you and Chrissy were able to get together...I know a few HD amputees, but I myself am just a very basic single below-knee, and I know it's much easier to communicate with folks who already have experience with your own level of amputation.

Do not allow anyone to make you feel that you have "failed" if you don't use a prosthesis. They can be a tricky piece of "gear" for an HD amp, and if you're comfortable getting around without one, that's perfectly fine. I will, however, echo Chrissy and Ann and suggest that you at least keep an eye on developments in HD prosthetics and consider trying anything that looks new and interesting to you. It's always good to have a variety of options available when you're dealing with an amputation and there may yet be some variety of leg that might give you "another option" to mobility.

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Hello! I am a new member in this forum since yesterday. I became a bilateral amputee (right, below knee; left, hip-disarticulated) after a traumatic traffic accident in 2012 at age 46. I got my below the knee prosthesis while in rehab about 4 months after the accident. I had to have a few reconstructive surgeries and it had required a lengthy healing period, before I could finally be fitted for an HD prosthesis in the beginning of this year. I have gone (and I am still going) through all the ups and downs of a long recovery journey any amputee could possibly ever face. Like some of you on this site had been looking for the right support group which I was never able to find. I had a look at the website www.hphdhelp.org which has not recently been updated. I couldn't find any group on Facebook that really addressed the needs and issues of high level amputees. So I decided two weeks ago to found a group for hip disarticulation and hemipelvectomy amputees ONLY. Initially, I thought about a small group of max. 15 members, as we are so rare. The more surprised I have been, that the group has already 39 members, all HD or HP amputees, with the exception of a few prosthetists. Someone in this forum mentioned Dr. Christina Skoski, the founder of the hphdhelp.org site. She now is a member in my newly founded group as well as a few other members from the hphdhelp site. My group is accessible through Facebook. I made it a closed group for the protection and safety of the members. Therefore, the content can only be seen by members. I am so pleased to see how many people contribute with tips, advice and sharing their stories. I feel so honoured to have two renowned prosthetists in the group, Tony van der Waarde from BC, Canada, and John Hattingh from VA, USA.

Whoever is interested to have a look at it, please send me a request through my group site on Facebook. The group is called "High Level Amputee Support Group".

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Hello Everyone,

My name is Maceala. I am a high school student who wants to create a new type of prosthetic. I was told to look for a medical forum on which I could communicate to those who deal with hip disarticulation, and I came across this website. My cousin was born with hip disarticulation, which is what caused me to want to do this project. If you know anyone who deals with hip disarticulation and is will to take my survey that would be incredible. I would love top stay in contact through out my project if you have any tips I should be aware of. Please write back. www.surveymonkey.com/r/9TYJQHY

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