AVN anyone?

[uscglady]

I was diagnosed  with  APS in 1999. Now  they have found  I have AVN (a vascular  necrosis) in both hips  - one replaced 2 yrs ago. But disease is in other one too. And now  they have found  it in both  feet after sever toe fractures. Anyone else  popping up with  AVH, too. Is it common ?  I only clot in my arteries, no vein clots for me ha,ha!

[Jane01]

I had AVN of Hip last year after a blood clot and PE. Hope it was provoked by surgery and I don;t have another!

[Yllek]

Hello

I only clot in my arteries as well - apparently my micro arteries. I have terrible bilateral hip pain and APS Dr said it is bone infarction (AVN) however my MRI was normal! He said it was due to mine being micro infarcts that are hard to image! I always feel like a fraud with a normal MRI but believe me my hips kill!! They're hopeful the warfarin will increase blood flow and reverse or stop progression of mine as its early AVN. Sorry you are suffering with this  

Take care xxx

[Manofmendip]

I had AVN in my right hip in 2006 after a clot, even though I was on Warfarin with an INR of around 4.0.

Dave

[Yllek in reply to Manofmendip]

Hi Dave

Did you need a hip replacement?

Kelly X 

[Manofmendip]

No.

Mine was transient AVN and transient osteoporosis and my bones recovered after a few weeks.

The consultant said that if I hadn't recovered they would have tried drilling into the femur head with a large diameter drill to remove the dead area of bone and to encourage the bone to regrow!  That sounded worse than having a hip replacement.

Luckily I'm fine now and on Fragmin instead of Warfarin and I have not clotted on Fragmin in the six years that I've been on it.

Dave

[Yllek in reply to Manofmendip]

That's good news! I can't get my head round having a normal MRI but still having AVN! I feel I have to justify myself to people but the pain is very real. It's been much better on warfarin until I try and do something more physical than usual and then the pains back. 

Hoping it will get better the longer I'm on warfarin but seeing dr again about it next week. 

Glad you're better Dave x

[Manofmendip in reply to Yllek]

Thanks

My first MRI was very abnormal but the second one, six weeks later was much improved.

[GinaD]

According to all the docs I saw over the years my hip pain, which began @ age 48 - 3 years after my APS diagnosis, was due to normal garden veriety osteoarthritis.  But, I , who had arterial as well as venous  clots before diagnosis, kept a detailed chart of food, activity level, weight, INR, AND over the years I noted a strong corrolation between my INR and my hip pain.  The higher the INR the lower the hip pain.  But my docs never wanted my INR over 2.5.  

But no doc ( except for my gynecologist and opthamologist) ever credited this observation.  Physical therapy did help, but basically, my hip slowly deteriorated over the years until replacement was necessary.  MRIs never confirmed AVN.  Maybe I was wrong regarding the source of the hip damage?  Maybe not.  

Imaging shows that the opposite hip, to this day, at age 61, has  way more calcium deposits then my effected hip ever did. But that hip does not hurt.  Never has.   My right knee is in horrid shape and one day will need  to be replaced, but there is no correlation between the knee pain and INR.  Also, I broke that knee at age 8 and the knee was never treated and so healed  off center with a bump which slowly tore away the surrounding tissues and generated more inflammation and calcification. 

Complicated.  I know. And now that the left hip has been replaced, that joint is doing fine.  The surgery went well in 2013 and I have recovered quite well.  So. . . AVN? Or garden veriety OA?   For me now a moot point.  

Good luck!

[MaryF Administrator]

Hi, yes others on here have both the conditions you mention, I hope you have a good specialist managing your condition.    MaryF