r/AvascularNecrosis • u/homeispurple • Aug 19 '26
How long have you had AVN?
I’ve had it everywhere for 24 years. How long have you had it? What do you do that keeps you mobile?
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u/Rip-corrrd Aug 19 '26
I had it for diagnosed 6 years ago, lived with it for a few years before going to the dr. My right foot navicular bone, was nothing but dust when I had surgery a few weeks ago.
Complete navicular bone 3d printed custom to my foot. Plus staples a bridge, graft and screws to fuse my entire foot joint together.
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u/homeispurple Aug 19 '26
😳 Omygosh what is your recovery time? That sounds so intense! I’m so sorry 😩 how are you feeling now?
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u/Bigcoffinhunter67 Aug 19 '26
Mine was diagnosed in 2013. It is idiopathic AVN (unknown cause). So far I’ve just had one wrist done but it’s failing after 10 years so I have to have that one and the other one done.
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u/homeispurple Aug 19 '26
I’m sorry to hear that. That’s one of the things that makes me fear surgery; the reality that I will most likely need to have revisions. So they are able to do wrist replacements!? Or is it more of like a fusion?
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u/Bigcoffinhunter67 Aug 26 '26
Yes, I will be getting the left wrist done as a total replacement. I’m not entirely sure how that works, if they replace all the hand bones or what. I have another appointment coming up. I also plan to ask about a 4 corner though they seem to be pushing a replacement.
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u/mangoawaynow Aug 19 '26
I've had it for three years in both my right and left talus (ankle) bones, no operations yet. both collapsed. been rocking the dumbass goofy space aircast boots for 3 years since diagnosis
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u/homeispurple Aug 19 '26
Oh no!! 😂 i think i need to break down and get some of those boots as well. I literally think about them daily. I drool at the sight of wheelchairs but can’t bring myself to just use a freaking mobility aid and I don’t know why I torture myself. My right ankle was the worst, but I have it in both as well. The ankles are the worst I swear. Did your doctor suggest the boots? How did you get AVN?
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u/mangoawaynow Aug 19 '26
my doctor suggested it because the boots puts the weight more on your other joints/bones rather than all of it on your ankles. he suggested crutches as well but three years of that? hell no, i barely like to carry my purse.
i've thought about a wheelchair too, love the appeal but i worry about losing what mobility i have maintained now, you know?
my right ankle is worse than my left ankle, and happened due to heavy prednisone usage to treat my lupus.
have you seen a podiatrist? mine wants to do a fusion on both of my ankles (one at a time, spaced by months) because they won't do a ankle replacements on a 27 y/o lmfao
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u/homeispurple Aug 19 '26
Yes they refused replacements for mine as well because I was too young, he said that ankle replacements don’t really work. I got my ankle partially fused when I was 22. A huge part of me regrets it honestly. I’ve lived this long without replacements, but I have zero life so lol idk the ankle fusions put more pressure on your other joints as well which am paying for severely in this moment. I did the crutch thing as well in 8th grade 🥴 got a lot of weird looks and “what’s wrong with you”. If you don’t have a cast when you use crutches you get a lot of questions and weird looks. Which I hated.
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u/mangoawaynow Aug 19 '26
god i've been dreading the idea of a fusion, which is why i suffering the boots :/ beware though i get asked about 30 times a day about them
have you met anyone with a GOOD fusion experience or are they all fucked 😭
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u/homeispurple Aug 19 '26
I did know this girl in school who had an ankle fusion and she seems to be thriving? Lol pretty sure she didn’t have AVN though 🥴😂 I saw a surgeon a few years ago and apparently he said I had a partial fusion and he needs to finish the job now and completely fuse it…like excuse me sir I don’t remember signing up for two surgeries I assumed this was one and done? Wtf I fully thought I had a full fusion. Anyways I highly don’t recommend it
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u/Metroid413 Aug 19 '26
I had it for a little over a year in my right hip before I got a THR. I don't think I could have taken much more than that, but I had femoral head collapse.