Multifocal AVN, Hips & Knees - welcome any discussions of painful journey.

Hello there,

At the age of 46, after years of Doctor (GP) visits here in the United Kingdom and being told time & time again my pain was soft tissue damage - finally, a MRI in December 2018 showed insight. It was discovered that I had multifocal intramedullary bone infarcts involving both femoral heads, both distal femur and both proximal tibia. My GP telephoned me 2 days after the scan with the news. It was quite a shock. The infarcts were not early stages. I was referred to a Rheumatologist Consultant for blood screening and after no immune disorders were discovered, passed to Orthopedics. I was presenting myself in relatively good health and it was a case of 'see how things go' which is fairly typical of NHS healthcare in the UK. I maintained a very good physical fitness regime and excellent nutrition. By the time the UK headed into its second Covid 19 Lockdown, I was beginning to feel quite intense pain, on/off, and consulted my GP. Referrals to Orthopedic Consultants followed and a MRI (with injection) showed the left hip to be in need of replacement. The right hip, less so, but certainly not overly healthy. The knee issues were put aside. I remained active up until February 2022 and by the time I was booked in for Left THA, April 2022, I certainly needed the surgery. The surgery was side access and cutting through the muscle rather than moving the muscle. Recovery was reasonable, I followed my exercise regime at home as no other physiotherapy offered on NHS at this stage. 6 weeks later, I saw the Orthopedic team, not my actual surgeon and was given the usual X-Ray. I was told I could begin driving again (manual clutch not auto) and restart my Gym activity, (stationary bike & cross train), low resistance and gradual. Leading up to my 6 month review appointment October 2022, I began to feel something wasn't quite right, I never truly got going at the gym, perhaps a little timid about it but still maintained some physical activity, even simple walking outside instead. The X-Ray appeared, mechanically, speaking, ok & I was told to give it a bit more time. In February 2023, I went back to my GP and requested a referral back to Orthopedics., by this time, not simply for the replacement hip but also, the right hip pain that was becoming painful. I had to wait until October 2023 for the MRI of the hips. (Inbetween this time, I had my right knee MRI, different Consultant). The hip MRI was inconclusive for the pain, now quite severe, I was experiencing in the left hip. The right hip was showing signs that it needed surgery, which was not a surprise but more importantly, it was agreed that further exploration of the frequency of pain in the left replaced hip needed further investigation. Now February 2024 and I am two weeks off a 3 Phase Bone Scan of the left, a much more in-depth look at what is happening in the replaced joint. I have to say, the pain in this joint is now more painful than it was in 2022 before it was replaced. The right hip is on standby for surgery and is becoming very painful now too. It's not a good combination. For the first time, this week I have been prescribed Morphine Sulphate at a low dose, an addition to my regime of Naproxen and simply paracetamol. I have avoided opiates as long as possible. Even with the Morphine, the pain is, of course, a constant. My knee AVN treatment is so long off due the hips. I can no longer drive and living alone in a rural area is quite difficult. I'm finding it hard to comprehend that 22 months in from a THA, continuous pain and now more acute pain in all key areas of the groin, outer thigh, buttock etc, I'm still in a position of not knowing what is wrong. I only hope the 3 Phase Bone Scan shows something meaningful so I can get on the road to recovery, whatever that may be?? Revision surgery or ?? and once solved, I can then have my right hip replaced soon after, then finally move on to the knee! Is there anybody out there with a similar multifocal AVN situation or similar THA hip issue they would like to chat about? Best Wishes.

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