Because of a fall (thumbs up for ataxia) I broke my hip some five years ago in September 2010.
The surgeon put some steel work in, which was taken out in two phases: February 2011, a so called dynamic screw which was causing a lot of pain when walking and in March 2012 they removed the rest. So steel-free since then:) The pain in my hip when wallking remained, not as severe but still. Sitting down I dont feel a thing.
In December 2012 a new consultation. I had two choices: an artificial hip or painkillers. I opted for the 2nd because he told me that he couldn't guarantee me being painless with an artificial one and that a healthy person needs some REAL physio to get walking again. So in my case he doubted, as also my neurologist once said, that I could do the necessary physio in combination with my ataxia. So maybe never walk again. Both their words. By the way, I never took the painkillers after reading the leaflet that comes with it. I take the pain as it is..and like I said: I don't feel a thing sitting down.
I am NOW considering a total hip replacement. NOT by coincidence, I had this mind twist. There is no such thing as coincidence. But that's a whole other story altogether:)
So anyone out there who has had this done, are you walking again or wheelchaired?
Would be great to hear from the experienced:) Hugs from Holland, Elle.
I haven't had a total hip replacement but several good friends have. Not having to cope with ataxia, they were up and running very quickly indeed. I wouldn't think you'd be wheelchair bound. Of course you will need physio.
If it helps at all, a year and a half ago I had a total knee replacement. It wasn't a bundle of fun but I made sure my notes referred to ataxia. That is very, very important. I was installed in a side room (all on the NHS!) and was out quickly
Your surgeon won't discharge you until satisfied you have someone at home to look after you until you are up and running!
Thank you for your response. Seems like there is nobody out there with the combination ataxia/total hip replacement.
So I am happy to take courage from your knee replacement. A vital part of the leg too, How did you start walking again? Can you give me some specific detail please.
I am already using a 4-legged aid indoors as we speak because of the hip pain, or I hang on to anything that comes my way: tables, chairs, walls, doors. My left leg is also somewhat shorter than the other due to the breaking. I have a lift in my shoe but it doesn't help much. I am sagging through my hip despite the lift.
I have an appointment with a surgeon next week.A very special one who applies the frontal approach of the hip and not the side ways one all other orthopedic surgeons do. With frontal approach there is no need to cut through muscles. Hope that he will be willing to operate me being an ataxian. He can also lenghten my left leg to be exactly the same as my right one again.The last surgeon in 2012 hesitated and advised not to have it done because I have ataxia.
Thank you for anything useful, hugs Elle.
Sarah-Jane Squire said:
hi Elle
I haven't had a total hip replacement but several good friends have. Not having to cope with ataxia, they were up and running very quickly indeed. I wouldn't think you'd be wheelchair bound. Of course you will need physio.
If it helps at all, a year and a half ago I had a total knee replacement. It wasn't a bundle of fun but I made sure my notes referred to ataxia. That is very, very important. I was installed in a side room (all on the NHS!) and was out quickly
Your surgeon won't discharge you until satisfied you have someone at home to look after you until you are up and running!
I have not had a total hip replacement but in October 2014 I fractured the NOF (Neck of femur) in my hip I (I didn't need a hip replacement but I had pins put into my hip) I was walking a walking frame the next day (hard and painful, but something that it recommended to recovery) I was on a walker rollor for about 3 months, I can walk now without aids, but I am cautious on uneven ground. I have SCA6 and I am 56 years old. I was diagnose about 6 years ago and I was still active, my only problem was I need hand rails when negotiating stairs/steps and occasional vertigo.
My mother and aunt both had SCA6, my mother died at 64 years old and my aunt lived till 82 years old, (she broke her hip at 78 years and was unable to walk again, she had to be in a wheelchair)
Thanks for your response. I also had the steelwork after I broke my hip in 2010. However, I have not been without a 4-legged walking aid ever since. What I have now is complete necrosis of the femural head of the once broken hip. Aah..an explanation for the pain when walking. Surgeon at the time told me that this 'could' happen over the years but not necessarily. Well in my case it happened. That is WHY I am going to have a hip replacement now. Scheduled for the end of October. So ever so curious HOW an ataxian will walk after that. Having a frontal approach of the hip operation which makes ALL the difference: you don't need crutches afterwards.
gail said:
I have not had a total hip replacement but in October 2014 I fractured the NOF (Neck of femur) in my hip I (I didn't need a hip replacement but I had pins put into my hip) I was walking a walking frame the next day (hard and painful, but something that it recommended to recovery) I was on a walker rollor for about 3 months, I can walk now without aids, but I am cautious on uneven ground. I have SCA6 and I am 56 years old. I was diagnose about 6 years ago and I was still active, my only problem was I need hand rails when negotiating stairs/steps and occasional vertigo.
My mother and aunt both had SCA6, my mother died at 64 years old and my aunt lived till 82 years old, (she broke her hip at 78 years and was unable to walk again, she had to be in a wheelchair)
i havent had a hip replacement but have had both knees replaced. from my research ive done hips are the easiest to recover with. there isnt that much p.t. involved as there would be with knees. good luck on your recovery .
Thank you! All responses with replacements are welcome. Us being 'fallers' :) not many out there with broken hips and replacements, Thank God for that. Or am I only hearing the 'good' stories? the ones who are up and walking again. I can handle ALL you know..just want to get the picture:):) This orthopaedic surgeon Dr Henkus, who is going to do the 'frontal approach' replacement said, and I quote: I can do nothing about your ataxia but I can sure make you walk pain-free again.
Whereas the former surgeon in 2012 did not want to perform on account of me being an ataxian and not being able to learn to walk again. This one does the side-ways approach where you need crutches afterwards. So makes sense what he said. An ataxian on crutches, a guarantee for MORE falls, right. So you go home and accept the 'verdict':)
WHAT I donot understand is WHY in 2012 he did not at least mention the frontal approach and its mere existence. I happened to find this on YouTube some months ago. Are specialists/the medical field ignorant? Do people have to find out by their own what is possible or what is a good alternative? WELL, thanks a bunch for nothing, this cost me three years (2012-2015). Dr Henkus has been performing the frontal approach ever since 2006. It's a whole different technique, no need for crutches and start walking right away. So WHY not is this common knowledge? OR..is it in the inner circle and don't the ones with the side-ways approach want to recommend a technique they cannot perform themselves because they need a whole new retraining and building up operating experience. No need to wonder about this one!
It seems to me that no matter who does the surgery either way it would be impossible to know the walking outcome and pain threshold because every ataxia is differing in some way but all you can do is go ahead with the surgery and go from there. But that is my thoughts only. Jerry
You are absolutely right Jerry. Every individual is different. So you cannot build on the experience of others. I am just curious about others. And Dr Henkus who is going to operate has never had an ataxian on his table before, just coming as close as a Parkinson's patient. Thank you for your response.