THR Bilateral THR due to AVN
- Thread starter emersonf
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emerson,
It is understandable that this is extremely difficult and an emotionally painful time or you. All you can do is take baby steps and you're doing that through making and attending appointments. In getting out you're forced to reconnect with life even though you don't care to right now. The sunshine, fresh air and being outdoors in nature is healing. It regulates our mood, gives us energy and can help with sleep. It may make you feel less lonely to smile at a stranger and receive one in return. Doing so may even feel heavy and emotional, but it's also healing. I'm sure your daughter would want this for you. Moving forward doesn't mean you’re leaving your daughter behind. The memories of her life and the love and special times you shared are yours forever, no one can take that away. I once heard a phrase that in grief, "it is okay to look back, but try not to stare." It is the staring that can keep you from taking even the smallest steps forward. In looking back, you're remembering, honoring, loving, but in staring you can easily get trapped in the pain of what cannot change. I pray you have a peaceful week and wish you the best as you go to your appointment this week.
Big hugs!
@emersonf
It is understandable that this is extremely difficult and an emotionally painful time or you. All you can do is take baby steps and you're doing that through making and attending appointments. In getting out you're forced to reconnect with life even though you don't care to right now. The sunshine, fresh air and being outdoors in nature is healing. It regulates our mood, gives us energy and can help with sleep. It may make you feel less lonely to smile at a stranger and receive one in return. Doing so may even feel heavy and emotional, but it's also healing. I'm sure your daughter would want this for you. Moving forward doesn't mean you’re leaving your daughter behind. The memories of her life and the love and special times you shared are yours forever, no one can take that away. I once heard a phrase that in grief, "it is okay to look back, but try not to stare." It is the staring that can keep you from taking even the smallest steps forward. In looking back, you're remembering, honoring, loving, but in staring you can easily get trapped in the pain of what cannot change. I pray you have a peaceful week and wish you the best as you go to your appointment this week.
Big hugs!
@emersonf
emersonf
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Hi everyone, my latest update is that nothing came out from all my appointments. But the doctors are saying that I shouldn't have such severe symptoms even though my knees MRIs are showing that the condyles have collapsed (lateral in one knee and medial in the other). The knee surgeon says he can’t help because of the hips and the hip surgeon can’t help because of the knees. So I’m back to square one. I don’t think anyone in the UK is familiar with multi focal avascular necrosis.
This must be terribly frustrating for you! Totally unsatisfactory, but I guess this is just beyond the expertise of the surgeons you’ve seen. The only thing I can recommend is that you keep searching for a surgeon who is willing to help you. You may have to travel quite a distance to find the right doctor. Keep trying the larger hospitals in bigger cities. Your current situation is such that things will not improve without surgery. If you haven’t tried hospitals in London, that is probably your best bet.
emersonf
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Thanks Jamie, I am in London and I visited 5 hip surgeons and 2 knee surgeons. They just don’t want to take on complicated case. But maybe they are right, I may not benefit from joint replacements if so many joints are affected. I don’t know
Are they telling you that having the joints replaced will not help? That makes no sense to me. I do agree that a lot of doctors don’t want the more complex cases like you have. But I still believe there must be someone willing to take the challenge.
I’m sorry I didn’t remember you are in London. This is a good thing because I believe you would be more likely to find someone there than anywhere else in the UK.
If you give me a list of the surgeons names that you’ve seen and where they practice, I’ll do some research to try and help.
I’m sorry I didn’t remember you are in London. This is a good thing because I believe you would be more likely to find someone there than anywhere else in the UK.
If you give me a list of the surgeons names that you’ve seen and where they practice, I’ll do some research to try and help.
emersonf
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The hip surgeons are saying that recovery will be very challenging. My hips haven’t collapsed yet so they don’t want to do anything. The knee surgeons said that they don’t think that my symptoms are consistent to the imaging, which I don’t understand as the images show stage 3 AVN with collapsed condyles. For hips I’ve seen: Hugh Apthorp, Richard Field, Sarah Muirhead, Emeka Oragui and Samantha Tross. For knees I saw Martin Goddard and Sam Oussedik
Legseleven
BoneSmart Staff
I am so sorry for your immense struggles, I can’t imagine how hard this search for help is for you on top of your daily life.
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Hi emerson,
Stopping by to say Hi and see how it's going for you currently. In stopping by, I'm realizing we missed the information you shared a few months back. Apologies for that, Emerson. I believe it was likely missed because, Admin, wasn't tagged. Thanks for providing the information and for your patience. I will tag @Jamie to make sure she catches this and hopefully she's able to provide some helpful information.
I hope you're having a good week!
@emersonf
Stopping by to say Hi and see how it's going for you currently. In stopping by, I'm realizing we missed the information you shared a few months back. Apologies for that, Emerson. I believe it was likely missed because, Admin, wasn't tagged. Thanks for providing the information and for your patience. I will tag @Jamie to make sure she catches this and hopefully she's able to provide some helpful information.
I hope you're having a good week!
@emersonf
Hi emersonf, I pray that you have found a doctor that will take on your case. Are you feeling any better? We have missed your updates.
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@Jamie
Did a quick search for the locations of these surgeons and came up with the following -
Hugh Apthorp - London Bridge Hospital
Professor Richard Field - The Lister Hospital / The Chelsea Out-Patient Center /Spire St Anthony's / The South West London Elective Orthopedic Center
Sarah Muirhead - HCA Healthcare UK The Princess Grace Hospital
Emeka Oragui - Nutfield Health
Samantha Tross - Chiswick Medical Practice / Clementine Churchill Hospital / Cromwell Hospital / Fortus Clinic Lyca Health Canary Wharf
Martin Goddard - Nutfield Health / Fortius Clinic
Sam Oussedik - The Lister Hospital / The Wellington Hospital / The Princess Grace Hospital...and a few more places where he practices.
Did a quick search for the locations of these surgeons and came up with the following -
Hugh Apthorp - London Bridge Hospital
Professor Richard Field - The Lister Hospital / The Chelsea Out-Patient Center /Spire St Anthony's / The South West London Elective Orthopedic Center
Sarah Muirhead - HCA Healthcare UK The Princess Grace Hospital
Emeka Oragui - Nutfield Health
Samantha Tross - Chiswick Medical Practice / Clementine Churchill Hospital / Cromwell Hospital / Fortus Clinic Lyca Health Canary Wharf
Martin Goddard - Nutfield Health / Fortius Clinic
Sam Oussedik - The Lister Hospital / The Wellington Hospital / The Princess Grace Hospital...and a few more places where he practices.
@emersonf …. So sorry that I missed your surgeon list. I’m not sure what to say as you’ve seen some of the experts we would recommend in the UK. I cannot believe the doctors want you to wait until your hips actually collapse. That just makes no sense.
I suggest you try contacting the patient advocate and/or ombudsman at each of the doctors’ hospitals and start registering complaints. Here is a website link for more information on how to proceed. You have a situation that needs attention and the fact that no one can agree on what can be done is not an excuse for letting things slide.
Please let us know how things go and be sure to tag me when you post. You do that by typing the “at” sign (@) in front of my username with no space in between….like this….. @Jamie.
I suggest you try contacting the patient advocate and/or ombudsman at each of the doctors’ hospitals and start registering complaints. Here is a website link for more information on how to proceed. You have a situation that needs attention and the fact that no one can agree on what can be done is not an excuse for letting things slide.
Please let us know how things go and be sure to tag me when you post. You do that by typing the “at” sign (@) in front of my username with no space in between….like this….. @Jamie.
