NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › chiari malformation?
- This topic has 8 replies, 5 voices, and was last updated 9 years, 8 months ago by Lab-Scientist-Lady.
September 21, 2013 at 1:33 pm #579
I just had an mri done and am waiting results but would like to know what people that have this think of the mri… I have EDS (classic) and pots with autonomic dysfunction etc.. input would be greatly appreciatedSeptember 21, 2013 at 2:49 pm #4408
Have you compared it with my example at
My comments on yours would be that it’s difficult to tell whether you have a collection of Cerebro Spinal Fluid at the top of your head (hydrocephalus), or not, from the quality of pic that you’ve posted. I notice that the lower part of your hind-brain (cerebellar tonsils) abutts the foramen magnum (the hole at the bottom of your skull). This is called Cerebellar Ectopia. Although it doesn’t protrude sufficiently in my opinion to qualify for Chiari Malformation 1 (CM1), which they say is 5mm (or was the last time I checked), it may protrude just a little, it’s difficult to tell when it’s not life-sized. From a reality point of view this could still manifest in a boat load of symptoms, especially if it’s interfering with the free flow of Cerebro Spinal Fluid (CSF) between your head and spine.
I do notice that you either have a retroflexed odontoid, or maybe it’s a pannus (difficult to tell for sure) but having a pannus is a sign of Cranio-Cervical Instability. A pannus is a pad of dense tissue which collects adjacent to the back of the tip of the odontoid peg and it’s something your body produces to try and stop your brain-stem from being injured by the bone (as your head shifts abnormally).
Of course, having a cranio-cervical instability in combination with cerebellar ectopia, is a whole different ball game with yet another boat load of symptoms. I notice you have a loss of lordosis (the natural C shaped curve of the neck), I take it this MRI was taken lying down. I also notice quite a wide gap between the back bottom of your skull and the posterior arch of your C1 (the top bone in your neck), which may be another sign of instability. It may be helpful if you could get an upright MRI taken in the ‘neutral’, ‘flexion’, and ‘extension’ views.
Have you had a head injury, or a neck injury ?
(UK)September 21, 2013 at 7:48 pm #4412
I have been asked privately which is the best to capture Cranio Cervical Instability – Cine MRI or Upright MRI and these are my comments:
Cine MRI is to look at the Cerebro Spinal Fluid (CSF) flow, it’s usually taken laying down (though for some, upright Cine MRI would be interesting !) Anyway, when laying down, if you have cranio-cervical instability (CCI), it will push the head forwards of the neck, compressing the hind brain (if you have Cerebellar Ectopia) against the brain-stem, thus constricting CSF flow. Cerebellar Ectopia on it’s own can restrict CSF flow. However, CCI on it’s own, without the Cerebellar Ectopia, is unlikely to restrict CSF flow.
Upright MRI: There is a document (under handouts) on the website that you may wish to give to the radiologist prior to your upright MRI, should you choose to have one (Arrgghh but I can’t find this! Dr Diana can you help locate it? – it’s the document to do with Chiari and EDS/Hypermobility)
(UK)September 21, 2013 at 11:44 pm #4413chadthrowerParticipant
Is this the article you’re looking for?September 22, 2013 at 12:18 pm #4414
Thank you, Thank you and Thank you!! I am so nervous about my appointment and having some understanding of what I am looking at and feeling makes so much more sense now which gives me relief in that area. I will keep you postedSeptember 22, 2013 at 2:28 pm #4415
Is this the article you’re looking for?
Sure is! Thanks very much for that.
(UK)September 24, 2013 at 4:51 pm #4421
I am beyond frustrated at this point. My MRI results game back normal of my brain… I have EDS and POTS and autonomic dysfunction and I have most all the symptoms from chiari I thought for sure they would find something. My entire head base of skull hurts and when I press on it, it feels like a bruise and feels like releasing pressure, I have had swallowing issues throat soreness, hoarse voice different times throughout the day and major headaches that radiate from the back to my ears and behind my eyes. Does anyone else see anything wrong with this MRI? I am not convinced this is normal and will be sending my records for a second opinion. ThanksSeptember 24, 2013 at 6:48 pm #4423charlie1Participant
I’m sorry Janelle but I can’t read MRI’s ! I do want to say though that I feel your pain.Most people would think it strange to hear you’re frustrated with the news that your results show your brain to be normal. But I know what you mean… you just want answers. Knowing that significant issues can be missed or disregarded by radiologists doesn’t help us. Wishing you the best in your quest for answers and better health.
CharlieSeptember 30, 2013 at 12:31 pm #4453Lab-Scientist-LadyParticipant
We are often told we are “normal” because the doctors miss the external fluid. Your symptoms sounds like you have high intercranial pressure. Diamox is a cheap fix and works overnight. Have you watched Dr. Diana’s videos on Diamox?
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