Sticky Blood-Hughes Syndrome Support
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AVascualr Necrosis update

Hi all,

I just thought I would update you all with my rather scary news:

Well, been back to Guys and it seems I have to have part of the femur, my knee and 2/3 of tibia replaced it also seems it may well be down to the steroids, to top it all, just had may other leg checked, and it is worse :-( with more necrosis of the femur...... nothing but for more surgery after the left leg is done. I am going to post this on the forum too.

My biggest questions, were, if the bone died due to lack of blood, is it possible my leg won't heal, or could I lose it. Answer was, Lesley, you are more at risk of not surviving the surgery, however, you are lucky the bone hasn't collapsed, so lets wait and see, but if it's a choice between your leg/s or your life, your life wins..... Scary times ahead.

5 Replies

How awful for you, and it sounds like they are gong to go at it with the best solution for you possible, please keep coming on here for support from us and other members, sorry things are currently painful and tough for you. MaryF


Hi Lesley!

I am so sorry to hear you are going through this. I wish more doctors realized the connection between giving steroids to people who are hypercoaguable and those people then going on to develop osteonecrosis (avascular necrosis).

Here is an interesting study from 2010, where the scientists found that "Vitamin E prevents steroid-induced osteonecrosis in rabbits".

I am not sure if it will help you, but vitamin E maybe something that you might want to discuss with your doctor.

And of course, they have known for a long time that "Warfarin reduces the incidence of osteonecrosis of the femoral head in spontaneously hypertensive rats". So making sure that you are adequately anticoagulated is very important.

Here is a report from 2014. "Regeneration of human bones in hip osteonecrosis and human cartilage in knee osteoarthritis with autologous adipose-tissue-derived stem cells: a case series."

"Conclusions: The MRI data for all the patients in this series showed significant positive changes. Probable bone formation was clear in the patients with osteonecrosis, and cartilage regeneration in the patients with

osteoarthritis. Along with MRI evidence, the measured physical therapy outcomes, subjective pain, and functional status all improved. Autologous mesenchymal stem cell injection, in conjunction with hyaluronic acid, platelet rich plasma and calcium chloride, is a promising minimally invasive therapy for osteonecrosis of femoral head and, with low-dose dexamethasone, for osteoarthritis of human knees."

The most important step seems to be finding a doctor that specializes in avascular necrosis and who is really into the research. They seem to have found many new options in the last five years (from new surgery, implants, stem cell, and new drugs). At the bottom of this article, this doctor answers questions about AVN. If you have a question, he seems pretty good at responding. He is with HSS in NYC which is highly admired and a top research hospital in the United States.

I am praying for you!!!

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Hi I have oesteoneucrosis, due to long term problems with blood clots without diagnosis and correct treatment, warfarin Clexane etc

I had a bone density scan Dexa, it showed my bones were dense

After a bone biopsy in which the orthopaedic surgeon said he had never seen anyone with such tough bones, their was no suggestion of an operation, I often wondered if I fell and broke a bone would it heal.

I am sure I would have broken my wrist on several of my falls if it wasn't so tough, why do they want you to have the operation?


I go to Surgeon on Monday -cat scan to see how bad the AVN has progressed since my Core decompression done 6/6/12.

they knew that is was going to come back - just how quick was the question and being an 80% risk factor for surgery, they want to be sure.

they did the core decompression to see how i would deal with surgery and bleeding-- and healing of which i had minimal bleeding.

but if let go to long they won' be able to do the total hip they way they want.

so Monday the 13 th will tell for me .

sounds like you are much more serious than I -- best off luck my friend -

please let me know how things go from here on out with you Lesley. my thoughts are with you .!!

C& J


Scary indeed! I hope it goes well for you, and will keep you in my thoughts. In my experience, doctors either scare the crap out of you or minimize the risks. There doesn't seem to be an inbetween.

Make sure you ask LOTS of questions and don't take what any doctor says as gospel.

Thanks Tranquility1 for all the info you provided! I am in NYC near HSS, so good to know.


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