Help needed! Possibility of surgery due to avascu... - LUPUS UK

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Help needed! Possibility of surgery due to avascular necrosis!

SLE-Warrior profile image
5 Replies

Covid has made it difficult to receive adequate care because of social distancing.

In June 2020, I received a steroid injection in my left hip. Honestly, I have not seen much improvement. I have increased my fitness by exercising 3 to 4 times a week and hoping it would improve my mobility. I was using a walking stick since February 2020 and since June 2020 I have been using a crutch which am I currently using.

I had an x-ray of hip and MRI scan. I have finally got the results my consultant said I have avascular necrosis.

mayoclinic.org/diseases-con...

And discussed the possibility of surgery. I have consistently exercised since May 2020. I need to book an appointment with my physiotherapist however I do not like the fact all my appointments are now online.

I am trying not to worry but just need some advice.

I need some advice from anyone who is in a similar situation or has/had problems with their mobility. Any advice will be welcomed!

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SLE-Warrior
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jetjetjet profile image
jetjetjet

I developed AVN from the APS in Right hip and they had never done a procedure for this here.So they decided they would do a Core decompression instead of total hip as it is less evasiveness than a total hip . This was done in 2012 and i am now starting to have pain again and I also am going to be picking up my exercising program and they do know it usually goes Bi lateral .I have been having tenderness in left hip now,But after the core decompression they cleared the way for me to have a total hip when it became necessary .I was also having injections into both hips which was stopped for awhile and now they are going to try a new type of injection. My Rheumy is checking into it now and i have an appointment next month for these. i can't remember what it was called. but I can check into it and will let you know how it all works out if you would like ..The pain I am having now isn't real bad yet but it won't be getting any better unless the injections may help but for how long ??

SLE-Warrior profile image
SLE-Warrior in reply tojetjetjet

Thank you for being so open about your situation.

I have continued to work on my exercise regime and I have returned to swimming. I have continued to get the stiffness in my legs and joints. I find it difficult to squat as a result of my stiffness. I have considered to increase my swimming twice a week and see whether this will help. I am only 28 years old and the possibility of surgery is not something I would want to do. I have also considered getting a professional massage as well to help my situation.

Maybe physiotherapy may help your situation??

jetjetjet profile image
jetjetjet in reply toSLE-Warrior

i was glad i did it because it was worth it I am 66 and was 54 when i had my hips done - i was a gymnast all thru school an my joints took a beating Ha

Deiniol profile image
Deiniol in reply tojetjetjet

Can someone tell me what the symptoms are of AVN? I started having pain in the top of my left buttock, thought it was my typing chair as I'm working from home since March. Changed the chair to my works chair but no improvement. It then started to hurt round the side and my groin. The pain is worse in bed at night, especially if I've done a lot of walking in the day. I'n not sure if it's muscle or joint. Afraid it's AVN as I've been on steroids for 37 years. On 7.5mg now since I can't remember and can't come off ever. Any thoughts? Thanks.

Pollynolongerinagony profile image
Pollynolongerinagony in reply toDeiniol

Hello there Deiniol , so sorry to hear you're struggling. Last year I had crippling pain in my right hip, agony . I have PMR and used to my system being attacked by arterial inflammation in various places. I'm on 8 mg pred/steroids. My Rheumatologist I eventually saw me he said I had a bursitis from knee to hip, so tender sometimes hot, plus painful. My right buttock was so tender all because of my hip. He thought it was my iliac region as extreme pain on lifting leg plus severe low back pain. He also considered AVN and this made sense to me as it was neither muscular nor skeletal pain. Climbing stairs brought me to tears and eventually I had to sleep downstairs...... Rheumy gave me some gentle exercises to target area mobility. And heavy duty pain killers, booked me in for a scan.... The appointment took so long and very very slowly the symptoms eased... so much so I felt I did not need to go. It's 80% better now, and PMR is busy voraciously attacking other areas, every now and then my right hip goes and I'm in agony for 48 hours but it fades thank goodness, but its damaged and left a weakness. I do pray you will be diagnosed and help. thankyou for sharing your story, keep safe vry best wishes Polly

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