28 years old and diagnosed with AVN, surgeon says I need a total hip replacement, what should I do?
Posted , 9 users are following.
My medical history is somewhat complex. At 23 I was diagnosed with Acute Lymphoblastic Leukemia, and I had a brain hemorrhage which paralysed my right leg. I suffered from seizures for a while until I started treating them with Keppra.
Apparently the steroids I had to take for leukemia prevention caused a complication. It's suspected that it caused avascular necrosis of my femoral head of my LEFT leg. My right leg was the one that got paralysed, until now my left leg was my good leg. I complained about pain often but my doctors didn't take it seriously because they just assumed I was overcompensating with it. I've been in some amount of pain for about a year and a half. It still doesn't hurt too much, I can walk on it but my doctor said that if I continue to do so, it will eventually collapse.
I got an MRI after an xray to make sure of the results. He told me I'm currently in stage 1-2 out of 4 of AVN. He proposed the idea of a vascularized fibular graft to try and heal the bone and get things back to normal. He told me that he doesn't encounter AVN too often as he's sort of a small-town doctor and recommended I speak to someone else.
I spoke with a surgeon at UCLA (I'm in California) upon recommendation and the surgeon told me that the damage was too intensive and I would require a full hip replacement. He said that a vascularized fibula graft or a core decompression surgery were "very unlikely" to fix the problem.
This is really discouraging, and I'm really reluctant to get a full replacement done since, apparently I still don't have a collapsed bone. I'm in the process of getting second opinions but I feel scared. I know I can live a normal life 20 years after I get a replacement, but what about after that? Assuming I'm optimistic and living to be 90-100, I'm looking at 4 more replacement surgeries in a BEST case scenario. That's not even including the chance that something could go wrong at any given point aside from regular wear-and-tear.
And yeah, I know technology might improve, but it's still very taxing to have intense surgery like this done on you at any point, especially on the hips since it's my understanding that the bones eventually wear away and each subsequent surgery gets more difficult and complicated.
Any advice?
0 likes, 7 replies
Agentcooper mikael61683
Posted
Hi Mikael,
Im so sorry that youve been through so much, you are so brave.
Im also facing a THR at a young age (36) due to developmental hip dysplasia and I have the same future concerns. Everyone keeps saying to just focus on the now and believe in the technology, but I really dont want to be in a wheelchair in my early seventies if that doesnt pull through - I want to be enjoying my retirement! I have it in both hips and although my 'good' hip is holding out, it will need sorting eventually too.
It sometimes feels like the advice is to take the 15-20 year fix and then its all pretty murky...
Dana07 mikael61683
Edited
Your story is one of courage and it's very impressive. I am 45, double THR and I feel very good after the surgery. I had my doubts, my fear that these Implants cannot last a life time, but then one doctor said me: the quality of your life it's important NOW! You cannot suffer many years, leaving in pain and for what? If the second opinion is the same, to have THR, I would do it.
Anything you decide, I hope everything will be fine ! Take care!
alan1954 mikael61683
Posted
you been through it I feel sorry for you but if you need new hip get it done be bit of pain for few months but it will get better had my hip done 27 February this year and difference if plain to see go for it
ptolemy mikael61683
Edited
AVN can be a side effect of steroids, what a rotten thing to happen. If it isn’t treated, AVN can cause the bone to collapse. In its early stages, AVN usually doesn’t have symptoms. As the disease gets worse, it becomes painful. At first, it might only hurt when you put pressure on the affected bone. Then, pain may become constant. If the bone and surrounding joint collapse, you may have severe pain that makes you unable to use your joint.
I think looking for different opinions is a good idea. Hip replacement has changed out of all recognition over the years and I am sure will in the next twenty five years.
grekhi mikael61683
Posted
sorry to hear about your situation. i just got diagnosed with AVN with bone collapse and have been doing a lot of research. NOt sure what you have done so far since your post is few months old. have you looked into stem cell...has good results for stage 1/2. i am considering hip resurfacing for myself.
grekhi mikael61683
Posted
sorry to hear about your situation. i just got diagnosed with AVN with bone collapse and have been doing a lot of research. NOt sure what you have done so far since your post is few months old. have you looked into stem cell...has good results for stage 1/2. i am considering hip resurfacing for myself.
thea63057 mikael61683
Edited
Hi, I was 25 years old when I was told I had hip displasia that was so far gone that I literally didn't have a right hip. I went ahead and got a THR. I was absolutely good for 21 years. That was 1995. Fast forward 2016, it was time for my revision because ofcourse they done last forever. After the revision I felt fine, 4 years into that it was discovered that I had what they call periprosthetic Osteolysis, which is a fancy way of saying bone loss around the prostetic joint. The bone had literally melted away in places where the prosthetic joint connects to the bone. As a result, I underwent another surgery in 2020 to have bone grafting done. I'm a year into that surgery and now they are thinking the hip is lose. I tell you my story to share my reality with you. It doesn't mean this will happen to you.. If you need it done, definitely do so. Hope my story helped you in some way. God bless.