Will the NHS cover surgery for retroflexed odontoid?

General
1

Hi I’m wondering if the NHS does surgery for retroflexed odontoid/basilar invagination? I just read about a woman with cranio cervical instability & how the NHS wouldn’t cover her surgery so she had to pay £350,000 for surgery… this got me worried if the NHS will cover retroflexed odontoid surgery. I do not have a supportive family and they will not offer me money for surgery if I do require surgery.

Comparing old scans to new scans, my odontoid angle is getting progressively worse, it used to be 20 degrees in May last year, but now it is at a 25 degree angle, as of late September 2020. September 2020 is also when my symptoms weren’t adequately improving after sleeping through the night in bed. All my scans are lying down. so I’m assuming the angle is even worse when I’m sitting or standing…

Edit - I thought I might clarify that it’s the entire odontoid bone that is retroflexed, not just a portion of it. I have EDS

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Hey Yota,
I’m in Australia and I’m sorry to say how the NHS works (Or doesn’t work) is well outside of my league,
But in having EDS, it may be better to investigate it as an EDS symptom/treatment rather than looking at it from a Chiari stand point. Retroflexed odontoid is a known symptom of Chiari but may not be covered, but when viewed as EDS with Chiari as a contributing factor this could alter how they categorize it.

Just a thought
Merl from the Modsupport Team