u/808Sate

Approved by djspacebunny

Hi everyone,

I’m a patient-researcher in the UK. I’m currently managing the long-term effects of a shattered pelvis and 15 spinal wedge fractures. Through my own recovery and total hip replacements, I’ve had to navigate the complexities of Heterotopic Ossification (HO)—that "body turning to stone" sensation where bone grows in soft tissue.

I realised there wasn’t a centralised, permanent place for us to find and share high-quality clinical data alongside personal experiences, so I’ve started r/HeterotopicOssify.

The goal for this community:

• Centralise Research: A non-profit library for clinical data.
• Peer Support: A space for shared "human touch" insights.
• No Noise: Strictly a resource—no sales or coaching.

A quick note: This is a very new venture for me. I am learning how to manage this condition and how to moderate a community at the same time. The subreddit is in its earliest stages, so if you join, you’ll be among the first.

If you've dealt with HO following trauma, orthopaedic surgery, or injury, you are very welcome to join us. I’ll be around to answer any questions in the comments.

I have lived with juvenile myoclonic epilepsy since my teenage years for over twenty years, I was prescribed the anti-epileptic drug sodium valproate, known as Epilim Chrono.

At the time, the long-term impact of this medication on bone health was not fully understood, but it effectively made my skeleton incredibly fragile. Once the severity of the bone fragility was realised, we began the transition to a new medication, but during that period I suffered three seizures. Two were falls from standing and one occurred while in bed; due to the bone weakness, those episodes resulted in fifteen spinal wedge fractures across my thoracic and lumbar spine, ranging from mild to extreme.

​Following the spinal injuries, I underwent a major pelvic reconstruction to re-align my hip sockets and put my pelvic girdle back together. Because the pelvis is the foundation for the spine, this was a massive undertaking that fundamentally altered my mechanical alignment. A few years later, I underwent bilateral total hip replacements to try and regain function. However, as a result of the extensive trauma and the surgeries, I developed heterotopic ossification—a condition where the body grows extra bone in the soft tissues around the joints.

​I am currently managing grade four heterotopic ossification in my left hip and grade three in my right. The grade four classification in the left hip is especially severe, as the extra bone growth has nearly bridged the joint, significantly restricting my movement. I am sharing this to connect with anyone else navigating a "total rebuild" or dealing with the complications of heterotopic ossification.

Because this condition is so specific and often isolating, I have recently started a small subreddit dedicated entirely to sharing experiences regarding HO, as I wanted to create a focused space for those of us navigating this particular reality. It is a complex journey when your foundation is a mix of original bone, hardware, and the extra bone your body decided to grow on its own.