Amanda, UK - email@example.com
My 13 year old daughter Megan first complained of pain through school 4/5 years ago when she found it difficult to sit on the floor. I took her to the GP who's said without examining her physically that children run and jump and fall and she has probably bumped it and it will take 12-18 months for it to heal. To me it sounded plausible...
My daughter in 2017 complained of her pain a lot and I asked how long this pain had been going on for... She said all the time. "I just though it was normal because the doctor said".
I began a long journey of banging on doors to get her pain taken seriously. Mid 2017, after repeated errors in failure by professionals to either refer or even look at her lower spine with their own eyes I finally got an appointment with Mr Prem, a foot surgeon. I insisted to him he was to look at her spine not her feet and thanks to him and by the grace of God he ordered an X-ray due to my insistence.
Megan's coccyx was bent through 90 degrees and her sacrum was prominent and flattened.
He referred her to spinal surgeon Mr Mertha. We saw Mr Spillsbury (see Doctors and specialists in the UK, West Midlands). He advised coccyx removal was last resort but trying MUA (manipulation under anesthetic) and steroid injection.
The day Meg had MUA for the first hour or so she was OK walking etc. Then... Pain... Pain ...pain... I called the hospital ward on many occasions to say her pain is worse and her bruising is not going. But they said... Don't worry steroid takes time and surgery leaves bruising .... Plausible.
Her pain never went. Our GP prescribed cocodamol after the MUA. And still her pain wouldn't go. She siezed up for a third time at school about 5 weeks after the MUA and needed for the third time morphine ..and diamorphine ... Gas and air and other Meds to control the pain... Her blood pressure fell below 50 and she was transferred from the children's hospital to the Royal Orthopaedic (where her MUA had taken place)
I was advised that "If I don't know what to do, no one will" by Orthapedic surgeon. ... And Meg was discharged with dihydracodene, gabapentin, ibuprofen and paracetamol.... Along with laxatives to assist.
My child suffered the humiliation over overhearing ward staff say "don't know why she is here there's nothing wrong etc...." A week later the surgeon called and left a message to call... Meg was to have an urgent MRI and not to worry.
This revealed that her coccyx was broken.. During manipulation.... She can't now have a coccyx removed because the surgeon has never done this with a fracture/break and she is to try NOT to sit. My child is 13. My follow up is in 4 days.
I would be grateful if someone with the same or similar experience would get in touch.
Amanda (Megan's mum)
Note from Jon Miles:
I emailed more than a year after this story was posted, to ask for an update, as the long-term outcome of treatment is of great interest. In this case I did not get a reply.