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MoCo
05-13-2009, 10:22 PM
hello everyone, i'm a newbie and i've had lupus for 10 yrs now. nice to meet everyone! :cute: i have a lot of questions and i don't know where to start lol. ok here goes....about 5-6 yrs ago i got avascular necrosis in my right hip and my left hip is almost there. my rhumy told me that i would need a total hip replacement and i've been holding out these past few years and still holding out for as long as i can can bare the pain. does anyone have avascular necrosis or had a hip replacement? i'm 28 going on 29 so i've got a ways to go and will need a couple of hip replacements in the future but for now i'm holding onto dear life lol. i've done a lot of research online and they all say when you've got avascular necrosis the best treatment is THR. does anyone know if it's possible for the bone to rebuild it's tissue after avascular necrosis? i can't spread my legs farther than my hips....is it possible to stretch my legs to get them to spread farther? is my hip going to give out one day and will i collapse to the floor with unbearable pain and finally be forced to have a THR? i've been able to bare the pain these past few years because it only hurts when i put too much pressure on it, walk too much or dance my ass off all nite :fam21: yes...i am still able to dance haha......hmm what was i talking about again??? damn that short term memory! :laugh: anyhoo any info would be greatly appreciated!

Rastagirl
05-13-2009, 11:52 PM
Hi Moco...

Welcome...glad to meet you. I'm Lori and I've had Lupus for 27 years now. I've had AVN and have had both of my hips replaced so I think I can answer your questions. I had to go on Prednisone at age 18 and by age 21 or 22 was already developing AVN. It advanced pretty quickly and I lived in pain for such a long time. I was very afraid of having the surgery, so put it off for as long as I could get away with. Sounds like exactly what you're doing. My Orthopedist also had told me that, at that time, they were beginning to see some problems with the cement they had been using for hip replacements. The cement was breaking down and splintering and leaking into people's bodies and causing problems, especially for people with compromised immune systems. He also told me they were making great advances and if I could hold out awhile, he knew they were going to figure out the problems and have something better to offer me. So I kept putting it off for another 10 years or so.

But that meant slowly, over time, living life in more and more pain and having more and more limitations. Near the end, I was in so much pain I could barely walk at all, was limping around depending on which hip hurt worse that day. And my quality of life sucked. I couldn't hike anymore or dance. It was even painful to find a comfortable way to sit at times. What was finally the clincher for me was when I couldn't have sex anymore. That's all it took for me to decide it was time. :veryhappy:

Unfortunately, I had waited way too long and every step was agonizing and I was living on 2 different strong narcotics taken round the clock to manage the pain. I couldn't stand on one foot anymore and the groin pain was horrific. When it got to the point that I couldn't be sure my hip wasn't going to collapse when I stepped down, I decided I had to do it. I had waited so long that in the end, one of my hip sockets actually shattered and they had to rebuild it during the surgery.

But I can tell you that even though the surgery is a major one and absolutely no fun, it was the best thing I ever did! I got my life back. It felt so good to be able to just walk without any pain. And when I healed enough and the muscles built back up, I could dance again. Woo Hoo...something I had missed so much.

I had my left hip replaced in June 2000 and exactly one year later, my right one replaced in June 2001. And the healing process went really well. My muscles and tendons attached quite quickly to the new titanium hip prosthesis and the spike that they put in my femur bone. They watch it closely for a few years following the surgery to be sure it's attaching the way it should. So I guess to answer your questions, the bone doesn't rebuild it's tissue, but the muscles and tendons grow and attach to your new hip, and then I've been put on Fosamax for my osteoporosis and that has worked very nicely to rebuild bone throughout my body...my wrists, my spine and my femurs. The last x-rays I had at the ortho showed some nice growth of my femur.

I would encourage you to go ahead with the surgery when YOU feel ready. I had to be ready for it physically (healthy enough) and emotionally before I was ready. And I guess I'd just add that if I had to do it over, I wouldn't wait so long until the pain was so horrible and I was about ready to collapse when I walked. Once it's over and you're healed, it's the greatest feeling in the world....

Last June I had a dream come true and celebrated my 25th wedding anniversary in Jamaica and I danced my heart out late into the night, every night to my favorite reggae with some of the most amazing Jamaican dancers I've ever met. I felt on top of the world...

If you have any other questions or concerns, I'll do my best to help and encourage.

Fondly,

Lori :grin69:

mountaindreamer
05-14-2009, 08:30 AM
hi moco,

just wanted to send my welcomes to you. I have not had to deal with the hip issues, but i see you got great help from lori.

so glad you joined us, hope the knowledge here can help you make the difficult decisions. Please keep us posted about your progress and options.

Oluwa
05-14-2009, 08:48 AM
MoCo..Lori...

My heart goes out to you two..for the pain you are in and the pain you had been in...your suffering...

Happy to know you are dancing again Lori..and soon too you will be able to without pain MoCo..help is on it's way for you MoCo...a definite positive outlook Lori shared, eh?

Welcome to the forum, MoCo...you've already met two of the wonderful people here...

Hugging you two..
Love,
Oluwa

ssingh
05-14-2009, 12:46 PM
Is this caused by prednisone side effect or lupus it self?

Pearl
05-14-2009, 01:39 PM
Lori - What a phenomenal story. I'm so happy for you.

MoCo,

Welcome to the site. As you have already seen, the members here are warm and supportive. Lori's story should give you hope and inspiration that there is a happy future for you, despite your lupus diagnosis. It seems we all learn to redefine what is really important in our lives.

I hope you dance.

Jana

Rastagirl
05-14-2009, 01:51 PM
Is this caused by prednisone side effect or lupus it self?

Hi Singh...

For me it was definitely caused by the Prednisone. I had to be on very high doses right after diagnosis...80 to 100 mg. for 3 or 4 years straight. I was so sick, I just couldnt' get down any lower in dosage.

In my case, the osteoporosis started quite rapidly, within 3 years. My doctor told me that in some cases, the rapid loss of bone can be quite accelerated, especially in persons of Northern European descent, and those with small bone structure. All my ancestors come from England, Scotland, and Ireland. And I'm tiny, 5'3" and barely 105 lbs. fully clothed with rocks in my pockets. :)

I remember you shared that you've been on Prednisone for at least 10 years or so.....I'm wondering, does your doctor check your bones with a bone densitometry test? I've been having those done for years now. My doctor has me on Fosamax, for the osteoporosis, and when I get my bone scan each year, we've been seeing great improvement in the rebuilding of bone, especially in my femur bones and my spine. That's something that helps me stay hopeful that I won't break into a million pieces before I'm even 60. At least they have these medications now to help stop and in most cases reverse the effects of years of steroids. They won't restore all the bone, but at least it's a good step in the right direction, rather than continuing to lose bone.

If I remember correctly, I think I read in one of Saysusie's prior posts that Lupus can also cause AVN, but I believe, in that case, it's at a much slower rate that the Prednisone causes.

Hope this helps....

:cool2: Lori

wrightrs
05-14-2009, 02:00 PM
moco, I would like to welcome you to the group. I'm so sorry you and Lori have this so young. I have knee and hip problems but I think mine come from OA. But I not real sure. I know your in a lot of plain.

I glad you found us.

Rastagirl
05-14-2009, 02:02 PM
I just had to do this......

Here I am dancing my heart out in Jamaica, to my Bob Marley tunes

>>>>>>>> :dance: :653: :musik39: ......

'Feel like dancin'...dance cuz we are free...feel like dancin'...come dance with me...'

'Feel like dancin'...dance cuz my hips are new...feel like dancin'...your hips can be too...'

(I made up that last part....I think Bob would be proud of me)

:cool2: Lori

MoCo
05-15-2009, 05:00 PM
thank you everyone for the very warm welcome! and thank you lori for your story...it really opened up my eyes. my AVN is also caused by prednisone....i had to be on 150mg for almost a year. i too was also very ill. i remember the first day i took prednisone very clearly....it was like i was in hell. my hips were also on the road to avn in just 3-4 yrs. i'm on fosamax but it was only just recently....not even a year. my first rheummy was not helpful at all. i came to her when my hips first started hurting everyday and was affecting my work (i worked at jamba juice...lotta stress on the hips) and she just said 'oh it's the prednisone because you started on a high dosage for a long period of time'. she didn't take any tests or give me any medication...nothing :grumpy: i kept bugging her bout it but she would just brush it off. my second rheummy finally took some tests and by then it was too late...the fermur of my right hip was already collapsed as seen in the x-ray and my left hip was heading in the same direction. he then suggested that i had an operation on my left hip to removed a piece of bone to lessen the pressure....i still don't entirely understand the whole procedure but at the time he said it was a chance at preventing avn and of course all i heard was 'preventing avn' i jumped right into it. boy was that a mistake....my left hip hurt even more after the operation. it wasn't until my third rheummy that put me on fosamax. he kept asking me why the other doctors didn't put me on it.....'i don't know' was all i could say.

this whole avn thing hit me pretty hard and i'm still trying to accept it even after all these years but thank you lori for opening up my eyes. i would've waited till my hips gave out and i collapse to the floor and the ambulance would have to come get me. i probably won't be emotionally ready for it any time soon but i definitely won't wait till the excruciating pain kicks in.

once again thank you lori and everyone here...i'm very happy i finally joined this forum. Lori, i'm very happy for you...i know exactly what you went through before your surguries and i can tell you and everyone here that you are strong and a survivor! now keep dancing till the sun goes down! :fam21::8:

have a great weekend everyone!!!

Rastagirl
05-15-2009, 05:10 PM
Sun's still shining here and it's 5 o'clock. That means I have about 4 more hours to dance....

:musik05::1244::653:

Hope your weekend's good too....let me know if you have any more questions...I'm happy to share and encourage. Sure wish I would have had someone to talk to back when I had it done....would have made the unknown more bearable.

Take care....

:cool2: Lori

mountaindreamer
05-15-2009, 06:26 PM
lori, it is 9:30 here and i hope you are still dancing....you make me dance in my chair....thanks for all of the incredible help that you provide to everyone.

Rastagirl
05-15-2009, 07:45 PM
lori, it is 9:30 here and i hope you are still dancing....you make me dance in my chair....thanks for all of the incredible help that you provide to everyone.

Yep, dancing in my kitchen as I fix dinner. I stir a little, taste a little, dance over to my computer, read a little, post a little, dance back....oops, stuffs burning.........Ahhhhhhhhhhhhhhhhh!!! :wacko: Okay, guess I can't dance, and cook and type. :laugh2: Okay, for a few minutes I'll dance in my heart :heart:

Awww, that's sweet of you, Phyllis. It's easy for me to help....all I have to do is remember how much I would have liked some help and reassurance way back when. Actually, I did have one man help me...I got to have a brief conversation one day with a man that had hemophilia and AIDS that had had his hips replaced. He answered some of my questions and helped me decide it was time to go through with it. After my surgeries were done, I tried to track him down to thank him again and let him see me pain free. Unfortunately, I found out that he had died from his AIDS. So very, very sad. So, to honor him and his memory in my own way, I vowed to help others if possible that have to have the surgery. I believe the politically correct term these days is called 'paying it forward'. Am I right?

Thanks for the love, Phyllis.....right back at ya!

Hugs n stuff,

:cool2: Lori

mountaindreamer
05-15-2009, 09:14 PM
yes lori,

paying it forward is the correct term....i love this phrase, and live by it every day.

dancing in the heart....what a beautiful image.

magistramarla
05-15-2009, 09:50 PM
Hi MoCo,
I'm another one who is doubly "blessed" with AVN and an autoimmune problem. However, my AVN is "ideopathic". I've rarely taken any steroids in my life. The strange thing is, that my mother and my aunt both went through all the same symptoms - rashes on their faces and necks, severe fatigue, and "arthritis" in knees and hips that progressed to the point of replacement joints. No doctor ever diagnosed them the way that I've been diagnosed, and they have both been gone for years, but I'm betting that they had both AVN and autoimmune issues.
So far, I've only had arthroscopic surgery on the right knee. It gave me some relief, but it is gradually going back to feeling just as bad as before. Someday I'm sure that I'll reach to point of replacement. I truly know about the awful pain and stiffness that keeps us awake at night. I wake up in pain every time that I try to turn over, and then I'm restless and disturb my husband's sleep, too.
Have you checked out the listserve for AVN? It is another great, supportive group of people. I've made some friends there as well as on this group.
Keep in touch,
MagistrMarla