Thank you very much for replying!
When you say ‘almost Chiari’ would this be a Chiari O?
Does this mean that this ‘almost Chiari’ could be causing some CSF blockage?
I have the images on disc, would it be helpful to post them here for you to see?
The ‘cerebellar tonsils’ part is the only part of the report that I didn’t really understand. But thanks very much for clarifying that for me.
When I saw the EDS specialist, as soon as he saw my symptom list, he suspected a Chiari.
I have been told I have a ‘retroflexed odontoid peg’ which is causing ‘ventral brainstem compression’. I’m not sure why this has happened, but it could due to part of my neck ‘sub-luxing’ when I move it. This, by the looks of it, is definitely causing a blockage.
I am now waiting to see a Neurosurgeon.
In 2009, I was referred to Ear Nose and Throat as many of the symptoms I’d been suffering for years had become unbearable. I was having the following symptoms- pain and pressure in my head feeling like my skull was going to explode, nausea and vomiting, vertigo, dizziness, balance problems, ear fullness/ popping/ pressure, pulsatile tinnitus, tinnitus, a sense of fluid behind my ears ‘whooshing’ sound in ears, hearing problems, neck pain.
My ears were fine, and they did a bunch of tests that showed abnormal eye movements and concluded that my symptoms were neurological. (Brainstem/ cerebellum).
Unfortunately these results were not passed on to anybody, so I just got worse and worse.
A year ago I was assessed by a brain injury organisation who said I had extensive brain injury symptoms- speech, memory, cognitive, movement, balance etc. But they obviously couldn’t tell me what was the cause.
Since these findings, I contacted them again and they said that this ‘retroflexed odontoid’ would be causing a CSF blockage (going in)- let alone the pressing on the brainstem, which would explain the ‘feeling like my head is going to explode’ sensation.
They’ve also gone through a list of my symptoms- speech, memory etc, to show the Neurosurgeon to show which parts of my brain could be damaged by some kind of fluid build up.
I’ve likely had this blockage/ brainstem compression for over 10 years.
Does this make sense to you, with your experience of people with this kind of condition?