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November 17, 2015 at 1:17 pm in reply to: Could someone please explain this upright MRI finding #5702misosoupParticipant
Hi
I just got a reply and he stated he didn’t think the gap was wide. That I have ‘laxity of the craniovertebral ligament complex and consistent with me suffering from the hypermobility syndrome’
November 17, 2015 at 9:12 am in reply to: Could someone please explain this upright MRI finding #5701misosoupParticipantHi Barbara
Sorry for the confusion.
Just to say the two MRIs I posted to compare (upright vs lying down), aren’t mine. They’re just some random ones I found online.
I wanted to see if an upright and lying down MRI made a difference with this gap thing. Obviously the ‘gap’ is a bit wider in the upright.
I’ve e-mailed the doctor who assessed my MRIs to ask about this gap.
November 16, 2015 at 4:25 am in reply to: Could someone please explain this upright MRI finding #5699misosoupParticipantI found two MRIs to compare. (The below aren’t my scans)
There’s a difference in gap size because it’s upright/ lying down.
November 16, 2015 at 4:21 am in reply to: Could someone please explain this upright MRI finding #5698misosoupParticipantTo answer your questions:
1. The gap means that the elements between the two structures are likely being stretched
2. Yes, occipital refers to lower back of head, atlanto refers to the atlas which is C1, the top neck bone, the bone the head sits on.
3. I asked if you’d been in an accident because with EDS the gap is generally more uniform and usually less obvious.
4 Just search online for ‘missed craniocervical injuries’ and you will see that it is commonly missed!!!I was wondering if it makes a difference as my MRI was upright?
November 15, 2015 at 7:11 pm in reply to: Could someone please explain this upright MRI finding #5696misosoupParticipantThanks!
Do you know what this gap means?
I’ve done some Googling, and I believe it’s the ‘atlanto-occipital gap’?
Btw, why do you ask if I’ve been in an accident? Is this not related to EDS?
I’ve had the report back from the upright MRI, and there’s no mention of this ‘gap’. How was this missed?
I’ve been looking at loads of MRIs to compare and yes, there is a definite gap there!
I do have really bad neck pain, constantly.
Thanks again
November 15, 2015 at 1:25 pm in reply to: Could someone please explain this upright MRI finding #5694misosoupParticipantHi!
Can you explain more, please?
I imagine that the Neurosurgeon will spot this too?
I fell from a tree as a 10 year old, flat onto my back, from around 7 feet. That’s the only accident I’ve had, really.
Just adding another image, to see if the ‘gap’ thing is clearer?
misosoupParticipantOh thanks!
Do you have any idea what causes it or what it’s related to?
Could it be caused by chronic dry eye? Or is it just ‘one of those things?’
The optician didn’t explain it to me at all, just gave me a name and told me to come in ASAP if I get floaters.
Thanks for the reply.
October 22, 2015 at 2:22 pm in reply to: Could someone please explain this upright MRI finding #5674misosoupParticipantThank you very much for taking the time to answer my questions!
The specialist said about the Chiari, as you have said, that it can be managed with medication and physiotherapy, and pain management.
He was mostly concerned about the retroflexed odontoid, which is why I’m being referred to a Neurosurgeon.
Also, the ‘left facet of the atlanto axial joint’ (no idea what that means!) is subluxing when I move my head. This is likely the cause of the ‘retroflexed odontoid’.
Would you be able to recommend anything I can do in the meantime such as- supplements or exercises? I take Vitamin D, also magnesium (after watching your video), B vitamin complex.
Thanks again for taking the time to reply.
October 22, 2015 at 11:13 am in reply to: Could someone please explain this upright MRI finding #5670misosoupParticipantThank 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?
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