Osteomyelitis ruining my life

[Tiny-Size&Hope]

Hello,

I don’t really know where to turn any more.

A year and half ago I discovered I had a very painful bone infection that had eaten my whole hip joint away (I mean completely gone). I am a very keen cyclist and as the pain had radiated down to my knee I had no idea this was going on in my body so I just tried bedrest and ice until the pain became so horrific-my mum took me to A&E.

The gave me ananda MRI and found out it wasn’t a knee problem and the reason I had suddenly lost the ability to walk was a severe bone infection that had eaten the joint away. I was only 33 and devastated.

The main surgeon/consultant wasn’t very sympathetic or understanding and did not explain what was happening to me in any way I could comprehend or put me at ease. They said then needed to get the dead bone out, wash it all out then put me on IV antibiotics to get rid of the infection then they can put in a replacement so I can walk again.

the pain was horrific and very traumatic recovering from the operation. We are now four of those same wash out operations down with Five stays in hospital for IV antibiotics no closer to my hip replacement except now the infection has spread to my pelvis so have had some of that removed recently.

I don’t think I will ever walk again and am trying so hard to be strong but I’ve had enough. Out of the last 15 months, 3 of them I’ve spent at home. And due to COVID restrictions I’ve been through most of it alone.
They don’t treat me that well in hospital and I’ve lost so much of who I once was. I’m close to feeling I don’t want to carry on like this. This is not the life I want for myself and everyday I’m miserable.

I have a fourteen year old daughter who is just getting so fed up with it all. I don’t feel like her mum anymore. She just wants tocome home but everytime I come out of hospital and she gets to come home she rememberers what it’s like now and how much our lives have changed.

Has anyone experienced anything along this like with bone infections that won’t budge and stopping joint replacements happening? Any advice at all please as this isn’t a common situation.

I have requested help from Oxford Bone Unit but I’m looking for anything, anyone and I’ll travel anywhere! Money is mot an issue at the point either

 

[Jamie]

My goodness, I'm so sorry for all you've been through and the challenges you are facing.

First, please tell me where you are in the UK and what doctors and hospitals you've had helping you so far. We have a representative, @Jaycey , in the UK and she may be able to guide you to a different facility that is better able to handle your infection and loss of bone.

Do you have an infectious disease specialist assigned to your case? If so, how long has that person been working with you? If not, you need to insist that one be brought in. If needed, enlist the help of your GP to get a referral. Since you've had four washouts, it would appear that your particular infection is beyond the expertise of your current surgeon. Jaycey can possibly give you some options of other doctors to pursue.

I'm glad you found us. We'll do our best to get you in the right hands. In the meantime, please don't hesitate to post when you're needing a shoulder to lean on. You're part of the BoneSmart family now and you are NOT alone as you figure out your next step.

 

[Jaycey]

@Tiny-Size&Hope So sorry this has been a nightmare journey for you. If you tell me who you have worked with in the past and what hospital I'll see if I can find someone for you.

 

[Layla]

Welcome to BoneSmart. Thank you for joining us.

My heart goes out to you for all you’ve endured and the journey you’re on. It‘s been a long road, but hopefully through any recommendations, Jaycey, provides you will find the help and resolution you’re seeking. Hold onto hope, for brighter days with your precious daughter, family and friends that love you. You will be in my prayers. Please know we’re here for you.
@Tiny-Size&Hope

 

[Jamie]

I hope you will consider accepting Jaycey's help to find a doctor who might be able to provide information and a treatment that can get on top on the infection.