June 7, 2023 at 12:39 pm #202939Reply To: Hip replacement and fshd
Speaking on my own experience from a perforated bowel, I believe much will depend on how much you are affected when you have the operation. You need to make sure that each and everyone who is dealing with you knows and understands your condition especially the anaesthetist. AS for afterwards the same would apply to the physiotherapists who will be helping you back on to your feet again.
For those on here who may have been through what you are now facing it would be useful to have a little more detail about how the FHSD affects you and what support you have normally.
So many love songs, so little love.June 8, 2023 at 11:23 am #202940Reply To: Hip replacement and fshd
Thanks for your reply. My concern is around the muscles in the hip, are they strong enough to cope with a hip replacement and will they recover afterwards. I read a document from February 2023 that stated a hip replacement had been done on a person with FSHD and they were the only one they knew of. I was surprised and wondered if it was true, maybe it’s not possible because of the lack of good muscle around the hip and pelvis region. I suppose I’ll have to wait and see until I speak to the doctor about it.June 8, 2023 at 12:24 pm #202941Reply To: Hip replacement and fshd
Clearly as you say, you must seek medical advice. But you must also speak to your physios who ultimately will be the ones who get you up and mobile.. You must also consider what the status of those muscles are now. Getting them reared with the correct exercises will help tremendously. With the right support from the team, especially if they understand our condition, then all will be well. It may even lead on to making a real difference to your walking as moving the hip area will become easier.
So many love songs, so little love.June 8, 2023 at 5:18 pm #202942Reply To: Hip replacement and fshd
My hip is so painful I struggle to exercise, as one false move leads to excruciating pain. I can walk, and have learned that if I move around for at least an hour a day, I get less pain at night, but too much exercise is bad, and I’m in agony all night. I don’t have access to physios, it’s not something I ever knew about, though I have been referred recently to a centre in Winsford that I was told had physios, I’m just waiting on the letter telling me I can go. I don’t think the problem with my hip is because of the FSHD, but I’m no doctor so can’t say for sure. But I worry that the muscles won’t cope with the surgery and I don’t want to end up worse off.June 9, 2023 at 12:27 pm #202943Reply To: Hip replacement and fshd
I also go to the centre at Winsford and it would be hard for me to suggest anywhere better that could help you. the staff there are truly amazing. For me it feels like my second home. Clearly there are a lot of things they can help you with in terms of mobility. I would guess that the surgeons will have imaged the hip and decided that a replacement is needed, rather than just because you have FHSD. I wonder also why you are putting up with the pain. Have you been referred to a pain consultant who again, can help you so much. Without the support I get from mine I would be curled up in a ball hardly able to walk and sleep because of the pain. These are reasons that I need you to know that you are dealing with clinicians who understand our conditions. Outside of neurologists very few do, as most will have not heard of it.
What pain meds do you use?
So many love songs, so little love.June 9, 2023 at 2:55 pm #202944Reply To: Hip replacement and fshd
I had my diagnosis of FSHD many years ago, and I have worked most of my time as a primary school teacher. I recently retired as I had started to struggle with mobility, but just sort of accepted that it is what it is. I’m not a great fan of medication for myself, it’s a personal choice thing, and when I can stand pain no longer, paracetamol will take the edge off and allow me to get some sleep. I’ve never been a good sleeper either, so probably compounds things. I use a TENS machine for all other pain sites, it’s just not useful for my hip pain. I’m looking forward to going to the centre at winsford, the nurse told me it was excellent.June 10, 2023 at 12:18 pm #202945Reply To: Hip replacement and fshd
I too did not like taking meds in fact I never had a day off school or work until well into my forties. Sadly things changed. I do hope that you can carry on with the regime you have. meantime do enjoy your trip to Winsford, and please keep us up to date with progress. Many who visit here find such things helpful.
So many love songs, so little love.
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