avascular necrosis

By deborama2 Sunday, November 22, 2009

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Hi everyone I was diagnosed with avascular necrosis to my left hip Spring of this year. In August I had a core decompression of the hip. I was doing okay while I was on crutches but as soon as I started bearing weight again the pain returned. I now have brusitis of this hip for 4 weeks. It was getting better too but yesterday I was running up and down stairs and felt some pain. The area is acutely swollen and so painful. I have been dealing with groin pain since March 2007. Both the surgeon and my GP both think I should be getting better and want to wean me off my pain meds. Has anyone had avascular necrosis and/or core decompression? I would love to hear from someone and compare experiences. This is ruining my life. I don't know where to turn or what to do anymore. Any replies would be greatfully appreciated!

Deb.

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Comments (23) | Add comment

Betty Boop Too

11/26/09 11:54pm

Hey Debo

I'm so happy I ran onto your sharepost this evening. I hope you had a Happy Thanksgiving, but I'm not sure this is a holiday in Canada, but Hope you had a good day anyhow.

I'm sorry to hear of your continued struggles and sincerely hope that you find some resolution to your pain issues.

Hope to see you around, much love and many hugs dear friend

Take care

Betty

Goodhope

12/ 5/09 9:31pm

Hi, I was diagnosed with avascular necrosis of the femur about nine months after incurring what I thought was a severe groin strain during a Krav Maga training session. I had a core decompression in March, 2007. The sharp pain decreased considerably over the first year. I hope that yours will as well. However, I still have pain in my groin every day. Moreover, within the last four months, I have developed pain radiating down my leg and centering in my calf that, at times, feels like a "toothache". It is possible that the radiating pain may be caused by my sciatica nerve and not have anything to do with avascular necrosis. Unfortunately, I don't know.

I returned to my orthopedist last week and was pleased that an x-ray showed no sign of collapse. My orthopedist, whom I believe to be highly qualified, said that there is very little chance of the hip collapsing in the future. However, he does not know what is causing the groin pain and the more recent radiating pain. He suggested that we could try a cortisone shot to relieve the pain, but I refused knowing that it is not curative. I have tried Celebrex which partly relieve the pain. However, I am concerned with its possible long term effect and it's expensive as well. Pleased that I will not need a hip replacement in the near future, I have decided not to medicate and do my best to live with the pain.

deborama2

2/ 6/10 11:55am

Sorry it has taken me so long to reply. My major symptom was and still is groin pain. I also get the calf pain as well. The core decompression didn't work for me. It helped for a while and then at the beginning of January the severe pain started again, just like it was before the procedure. I am now waiting for a partial hip replacement. They want to replace just the femur. I am relieved as this will fix the problem and then I will be able to go back to work and not be in constant pain all the time. I am so surprised the Dr. wants to give you a cortisone shot as this is one of the reasins why people develop this disease in the first place. I have had 2 cortisone shots before it was diagnoised and now they won't give me anymore due to the necrosis. I wish you well and hope everything is healing and the necrosis isn't returnning. Cheers!

brad

12/13/10 12:32pm

hello,

i am 34 and was diagnosed with avn on both hips a year ago. Ive been to four doctors and have one surgery (core decompression) with no success to releive the pain. How do you deal with the pain. I have fallen back on pain meds, and even with them have a hard time dealing with the pain. I wish someone could help. I wish the pain would go away.

deborama2

12/16/10 12:49am

I too had a core decompression to my left hip. At first it helped, but 4 months after the pain gradually crept back. I am now the proud owner of a new hip, I had a total hip replacement at the end of April of this year, and now I am returning to work gradually. I am very lucky this is what I needed. By the time I had my hip replacement I was in pain for 2 years. these were 2 of the worst years of my life. The pain of avascular necrosis has been equated with bone cancer due to it's severity. I so hope for you that hip replacements are in your future. It was the only thing that cured me. I thought I was never going to get better or ever go back to work again.

Be assertive in your quest for an orthopod to help you. DONOT let them write you off as chronic pain. The deciding factor for my surgeon was an injection of marcaine into my hip under fluroscopy. This is done in the xray department by a radiologist. It is a diagnostic way of determining if a hip replacement is needed. Good luck to you. I am so empathetic to your pain. It is all consuming and never completely goes away. Be strong and assertive!!!!! I hope you get the help you need! Please keep me posted.

Take care

Prav

10/18/11 11:10am

Hello Brad,

What is your situation now ,how is your pain ....did u undergo the surgery..pls reply

Thanks

Regards

Prav

AprilDawn

1/31/10 4:26am

I am 27 and I was diagnosed w/ AVN in 2007. I have seen an orthepedist 3 times, and a speciailist once throughout this whole process. Not because I'm not exsperiencing pain, but because I have no health insurance and cannot afford the high cost of having this disease. I struggle every day to mentally manage the pain, put it in the back of my mind, so I can try to have as normal and fun of a day as possible. I don't go out much at all anymore and yes, I'd say my whole personality has changed from this. Yet, I choose to think of having AVN as just something that I have to deal with, and when I think about it I know that it could always be a whole lot worse!

deborama2

2/ 6/10 12:03pm

Wow you have an amazing outlook! I am so sorry that you don't have medical care. I so hope for your country that some form or universal health care is developed. I live in Canada and even though we have wait lists I am so grateful that I have access to health care. I just don't understand the system in the US. The movie Sicko was an eye opener for sure. I hope your pain isn't too severe Aprildawn.

As in my previous post I have to have a hip replacement. The wait is supposed to be 6 months but I hope I can get in sooner.

Hope you are able to manage your pain. Cheers

Debo

jeff lazenby

2/15/11 3:47pm

I too have avascular necrosis of both hips. My right femoral head has collapsed and usually the pain is intense. I have no health insurance and the pain of working was finally too much. I have dealt with this for a little over two years and the pain never seems to go away. My doctors will not give me any pain meds. They say i'm too young for hip replacement and just deal with it . I was told to get a sit down job, but with no skills in that type of field it seems hopeless trying to find a job like that. I don't know what is going to happen over the next couple of years but I worry every day that I will end up homeless walking around with a cane looking like a freak. I hope others with this do not have problems like I do.

lynda

8/29/11 8:29am

Hi there..I'm so sorry to here your story and others..I too have AVN and have had it since 2/10 and have been back and forth to soo many docs. I am now on a waiting list for approx 1 1/2 years before they get to my name and then at that time set a appt which takes some additional time (lady at hospitlal explained)..Ito speak with a surgeon. I was given info to call for status on the waiting period to see where I am on the list in the meantime. I called last week to get an update and the lady told me that there was a man that has been waiting for 7 years for a hip replacement...ARE YOU KIDDIN ME!!!..I am only 50 and very young at heart and all around. I HATE this and am at the end of my rope. I have 2 grown children and 2 grandkids..this really is sad..and what the worst part of all of this is the HELP and the misconception of this disease and the damage thats being done while walking or stressing on the hip..not good...maybe we all should get our crutches and wheel chairs..etc and stand in front of Mr.Obama's sorry blank and see if he'll take us on his next destress vacation...whatcha think?....yes I am bitter especially when I see people like myself hurting and struggling. Not only does this affect our lives but our families and friends...I don't know about you but I'v used alot of my please's and sorrys and help me please till I'm sick of hearing myself.

Oh I could go on and on and I am but for now I will just say if you want to be updated on my findings on this journey with AVN..look out for my posts!..

I hope everyone with this keeps the faith and DO NOT take the pain pills unless you really have to try something else...this will cause you another problem...pain pills once in a while but daily..NO WAY...I have seen bad situations come of this.

Thanks for reading....Buffy with a smile.. stay positive...share a smile

jeff lazenby

10/14/11 1:36pm

thnaks for sharing your stories with me. I dont know why more isnt known about avn. I went agian to the doctor last week and heard the same response. I know that you have pain and I know you need a hip replacement but your only 40 so at 60 you will need another one which will be much worse. At 40 years old, i would like to live life again not be a shutin and worry about falling or moving a certain way that makes my eyes water from the pain . I do not want pain managemnet I want to be fixed. I hope soon the medical profession will take this seriously because I belive that avn can be a disabling condition. It is with me, I cant even find work because employers see me walk in to an interview limping and with a cane and i can tell it was a waste to even go to it. Good luck to everyone on this site and lets all hope things will bae better in the future, because we could all use some good news.

VLT

6/ 1/10 11:19pm

My husband is 4 month Post-op AVN Right Hip Core Decompression. He was doing great on crutches and in physical therapy. All of the sudden, in the last month he has developed hip pain again and groin pain..any idea? Is this normal or should he go back to the surgeon?

Thanks for any input

God Bless!

Vanessa

deborama2

6/ 2/10 12:22pm

Hello, so sorry your husband is dealing with this awful condition. I suggest he definitely goes back to the surgeon. This is what happened to me as well I had the decompression August last year and the pain slowly but surely started creeping back. January it was back to where it was before the procedure. I saw the surgeon in Jan and I am now the proud owner of a new hip. I had a total left hip replacement April 29th. I am doing and feeling awesome! I wish that we did this in the first place, but I know the decompression works on some people, but I wasn't one of them.

Please stand your ground and be persistent. I did see the surgeon a few times before Jan and I had to keep going back. I wish you luck and a solution to your husband's discomfort. AVN pain has been equated with bone cancer in it's comparison of level of pain.

Take care

Deb.

VLT

6/ 2/10 10:21pm

Thanks so much for replying to my post! Your insight helps a lot. I'm glad to hear that you are feeling much better after your hip replacement. Take Care and God Bless!

Vanessa

Shawnea

1/20/11 12:20am

Hi, my name is Shawnea and I was recently diagnosed with AVN in my hips. Last week I had a core decompression surgery done on my left hip. I was told by the dr that about 3-4 days after surgery I should start noticing the pain gettin alot better. Well, its been a week and I am in so much pain I barely sleep at night. So my question is how long should I expect to be hurting like this? Or is this maybe a sign that the surgery didn't work?

deborama2

1/20/11 11:27am

I so hope and pray for you that the decompression was successful. If you can't sleep from the pain I would definitely go see your physician again. My decompression seemed to work in the beginning, but as time went on it was apparent that it wasn't. Good luck to you. Please keep me posted!

Deb.

absofbeer

2/15/11 9:03pm

I also have AVN in both hips.. In November I had a Core Decompression on my left hip.. it relieved the pressure and felt pretty good while on crutches. I am now about 13 weeks since the procedure.. My pain is just about as bad as it was.. I am really stiff and achy after I sit to long and it makes me walk with a limp.. There sometimes a certain way that I move that makes my hip almost give out... I think it is the dead spot on it??

Anyways.. My pain from the surgery lasted about a week and I didn't feel very much AVN pain.. Is it the exact same pain from before the surgery you feel?? AVN Pain? Or is it that the bone was drilled and the incision pain?

Bill in Indiana

arenea

3/19/11 10:53am

Hi Shawnea. I am Adriane a 32 year old who has SLE (Systemic Lupus Erthyrmatosos) and as I result of taking steroids I too was diagnosed with AVN. I had to undergo a total hip replacement February of 2010. It was alot of work rehab and all but my hip is wonderful. But in January 2011 I was diagnosed with it in the left hip. So my doctor suggested Core Decompression since it was detected at an early stage. I had the procedure done February 4,2011. I noticed that about 2 weeks post op I started getting some relief. I could move my hip and had a great painless range of motion. I just got off crutches 2 days ago (after a looong six weeks) and last night i was hurting so bad till i couldn't hardly walk. They said my xrays looked great and i was ok to walk but i don't know what is happening. Has anyone experienced this?? I am getting a little nervous.

Anonymous

3/28/11 3:29pm

Hi Everyone,

I am a 32yo female. I was diagnosed with AVN of the right femoral head in 2001 while in the US army. I underwent a Free Vascularized Fibula bone graft and the surgery is deemed a sucess...I guess. The femoral head looks great now and no signs of collapse.

Why do I still have constant radiating pain in my right leg still? I know i have sciatic issues a bit, and some bursitis on by the incision site on my hip...

Its like a gigantic tooth ache but in my leg.

I never talk about it much, because I would just sound like a broken record to those around me. But yet at the same time...I feel like I am not validated as having this invisible disability. I have 3 small children under the age of 5, and my limatiations are become more apparent as they grow. "Run with me Mommy!"....yeah...thats a hard one to hear.

I hope wish you all well and hope to hear more about all of you.

Warmly,

Sabrina

nick

10/ 2/11 8:33pm

I too am in the army and was diagnosed about a month ago. i should be getting surgery here in about two weeks. what should i expect post op? im a little scared.ive heard all too much on how this surgery dosent work. some doctors wont even perform this surgery. any info would be appreciated. thanks

nick

MaineMamarazzi

10/ 2/11 8:55pm

Hi Nick,

So sorry to hear about your diagnosis. Do you know the cause of your AVN? What stage are you in?
The army misdiagnosed me for a while, saying it was just a femoral neck stress fracture..then they decided to finally give me an MRI..and OOPS, your bones dead!!

Gee thanks!

Where are you located. I had my FVFBG done at Brooke Army Medical center. I was the FIRST one done there!!! So I was their gunieau pig :-)

Recovery sucked! Especially waking up from anestesia.
You will have drainage tubes in your leg for a few days....and foot pumps to keep circulation going. The worst part is when they take out the thin drainage tubes.

You will have physical therapy...that was rough.

So if you just get through the first few days...you will be fine. Its just rough in the beginning.
I took con. leave and came home to recover for a month. I was in wheelchair and crutches for like 6 months! NO weight bearing.
THings may have changed, seeings I was the first one done there...so perhaps they have learned more about the procedure.

I could go on and on. I would be happy to chat with you via email.

fitmominmaine at gmail dot com :-)

warmly,
sabrina

Yaisa Hagood

3/21/12 10:25am

I learned I had AVG in my right hip in September. I had core bone decompression six weeks ago. Now trying to walk without crutches for the past few days is still painful. The movement is not normal and I am bent over. I hope this gets better. I am only 34.

deborama2

3/22/12 12:36pm

Best wishes with your recovery. I had a core decompression which was unsuccessful. I had a hip replacement 8 months later with great success.

Cheers, happy healing!!

avascular necrosis

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