Avascular necrosis

Elaineea

Has anyone any experience of Avascular Necrosis they can share on this site?

CarylW

Hello @Elaineea

Welcome to our online forum. We are a friendly group and always try to share our experience to help one another.

My understanding is that Avascular Necrosis is a rare complication of Sickle Cell Disease, and affects mainly the hips and knees. Maybe some of our members will know more and be able to help you.

Do keep posting - we look forward to hearing from you.

Best wishes

Caryl

Ellen

@Elaineea

Nice to meet you.

There is a member on here @pmas who I believe has Avascular Necrosis (AVN) and @frogmorton 's daughter has it and has had surgery of her hip and shoulder for it.

It is also known as Osteocronosis and means that the blood supply to the bone has been cut off for some reason leading to death of bone tissue.

I can remember others who have experience of this condition, but know these two members are currently posting. Hopefully they should now receive a notification that their names have been mentioned. They might then come along to chat to you.

It might help them if you post a little more about your own AVN.

Best wishes

Ellen.

https://www.avncharity.org.uk/

crinkly

I had Avascular Necrosis following surgery to repair shoulder fractures in the head of humerus - cause by a fall while playing 'walking netball' as part of my OA self-management strategy.

AN was discovered after a year and was complicated by the presence of longstanding OA (bone spurs etc) so I needed a total reverse shoulder replacement, which I had 15 months afer the fracture repair.

It's now four years later and I have had no further problems - other than the expected limitations of the successful joint replacement surgery.

Of course I don't know the details of your condition so this may not be helpful but please post more if you are seeking specific information.

frogmorton

Hi @Elaineea

My own daughter has AVN

It was due to treatment for leukaemia when she was 16. Mostly the steroids (oral) she had to take.

She had subcutaneous core decompression LT hip at 18 (it was femoral head and also long bones).

She had her shoulder replaced at age 19 it having fully collapsed.(humeral head I think)

According to one of her consultants this is not unusual in fact one was so dismissive 'I have seen children with it in all 4 limbs following intensive cancer treatment' I thought thanks very much and we got a second opinion.

I did use the from mentioned above myself when this first started. She survived cancer only to get this.

Still she is doing really well now and I hope you will too.

Take care

Toni x

Elaineea

Thank you for comments. Toni - I’m so sorry your daughter has AVN after her cancer treatment and at such a young age but that’s great she is now doing well. Crinkly - thanks too and hopefully no more signs of AVN.

Interestingly, my sister a few years ago, was told she had a blood supply problem to the left hip bone. She had her hip joint replaced but mainly due to OA. But I am wondering if there is a genetic link for the AVN if there were signs of it. Is AVN rare?

I have severe OA of the hip but apparently only 20% of the joint is affected - the message seems to be the joint isn’t bad enough for surgery. The AVN that is possibly there, they never seem certain, they have said could heal by finding other routes for the blood to get to the bone. I’ve had another MRI scan to see what’s happening and am waiting the results. But the constant pain which has got worse and the impact on my life in not being able to walk very far at all is bad and seems to perhaps be a combination of OA and AVN.

I also have OA in my hands and knees, no surgery yet. I am in my late 60s so presumably not too young for surgery

fizzypip

hi everyone, my mum is 88 years old and has severe avn in both hips so she is in tremendous pain and completely immobile. She had two ulcers on her leg( which are slowly getting better) preventing her from having surgery. The doctor has put her on duloxetine medication but this doesn’t seem to be working. What medication do you guys take and is it very effective. Thank you

PeterJ

Hello @fizzypip and welcome to the Online Community. I hope that you can find some answers to your questions on here. You could start by searching (magnifying glass symbol) to see what others have written but also hopefully some who have experience will see your post and provide some answers.

Best wishes

Peter