Posted 29 September 2008 - 08:07 AM
I have just now started to research what it is and I thought I'd start with you all.
Anyone ran into this? If so, what was your treatment?
Posted 29 September 2008 - 08:40 AM
It started out as just a minor glitch, but got so bad that I had to have the surgery.
Also, ten years ago I also had surgery on my knee for what was thought to be a torn meniscus, but turned out to be chondromalacia (worn away cartilage).
Posted 29 September 2008 - 02:46 PM
I'll get to talk to my rheumatologist next week about all of this. For now, I am terribly worried, as I don't know if surgery is appropriate for me since I have lung involvement. From what I have read, sounds like it's inevitable that the knee will collapse, and it happens within a couple of years. I am not a happy camper at the moment. Thanks for taking time to tell me about your experience.
Posted 01 October 2008 - 01:17 PM
I have just had a 5 month review yesterday with my rheumatologist, I had an xray of my lower back and pelvis area, due to severe stiffness and pain which I have had for months. The results were necrosis of a joint somewhere in the pelvic region. My rheumatologist asked whether I have had children, I said yes one son. She mentioned that sometimes especially with women that have had children necrosis can mimiced in that area. She was talking alot to another doctor using medical jargon , and asked whether I had pain or numbness in the legs, which I didn't.
Any way I wonder whether this is going to develop any further. Like Craig I was on prednisolone last year for a few months and wonder whether this is why I may have this.
Posted 01 October 2008 - 04:36 PM
I hope it is not osteonecrosis. I am just now learning about it so I am definitely not a pro, but I do know that if it is showing up on an X-Ray, it means it has progressed. Stages 1 and 2 in the knee don't show up on an X-Ray. They do show up on an MRI though. Once it has gotten to stage 3, it means it has progressed and could be near collapsing, which requires joint replacement. I don't mean to scare you, because hopefully yours is not actual. However, if you are having a lot of pain you may want to ask about getting an MRI to confirm or negate. There are some treatments that can be done before having to go the joint replacement route.
Did your Dr. not act concerned that you may have necrosis? I do hope it's just from your pregnancy. Maybe others will chime in.
Posted 01 October 2008 - 09:39 PM
Thanks for responding, I am trying desperately to get the actual report from the hospital without much luck. They refuse to give me a copy as it is hospital policy and all that rubbish. This has been eating away at me all day, I will try and get a copy sent to my local doctor.
My rheumatologist didn't seem all that concerned as I didn't have numbness in the legs. She said just to apply heat to my back, do stretching and take pain medication, which does not take away the pain. She even said I need to reduce my weight as this could be the cause of my pain. I told her I have already lost 7 kg and the pain is still there. I only need to lose another 7 kilos to be at my ideal rate.
Let me know how you get on , I will keep you informed on how I do.
Posted 02 October 2008 - 11:51 PM
I just thought I would give you an update, I went to see my local doctor this morning and managed to get my xray report faxed to him. Apparently I do not have Necrosis of the hip but I do have something that is called : Patches of osteosclerosis on the iliac side of each sacroiliac joint, benign entity of osteitis condensans, which would be consistent with me having a baby.
I'm not sure what all this means but will look it up, my local doctor seems to think this is scleroderma related, which I am not sure whether it is.
I'll be thinking of you and shall send positive vibes your way, chin up, you will get through this. This is just another hurdle that you have get through.
Posted 03 October 2008 - 05:58 AM
Thank you for such kind words. I've been pretty down about it. Another obscure disease that there's not much you can do anything for.
Please keep me updated because I find it interesting. I have never heard of what you have either, but perhaps some others on the board members are familiar with it.
I hope it's treatable with NSAIS or something not to brutal.
I just got back from my orthopedic appointment and was told just to listen to my body and take it easy, especially when it hurts. I'll start physical therapy which I am happy about. Sadly, my rheumatologist said I likely have it in my other knee as well. So far, my hips are in the clear though! Both doctors believe this is from high doses of Prednisone, that I was on for about 3 months.
Celia, you take care and rest. Holler if you need anything.