August 24, 2016 at 11:37 pm #1037
I have suspected a Chiari Malformation for a while. For the past 3-4 years I have been living in a new sort of EDS/ POTS hell. I have had sever neurological symptoms including multiple stroke-like episodes, occipital headaches, choking (mainly on liquid), a feeling of being choked/strangled (when sitting upright such as driving or in a desk), tinnitus, neck pain, blurred vision, sneeze-syncope ( mostly blacking out when I sneeze), my ears always seem to be “leaky”, etc. I do have scoliosis that hasn’t been monitored in about 8 years. Any feedback would be appreciated!August 27, 2016 at 8:06 pm #6004
I know some of those symptoms very well. Can I ask about the strangling/choking sensation, is it like your throat swells up for 30 minutes or so? If so, I know what caused mine, it was looking from side to side whilst my head was looking down (in flexion), e.g. when flicking through a magazine. I had to avoid the movement in order to avoid the consequences.
With regard to your MRI, I can see some extra fluid above the brain, as many of us have. You don’t have blatant Chiari but you do have what are called, low-lying cerebellar tonsils, see the post below for further info:
Regarding your neck, I can see a loss of lordosis (the natural C curve of the neck) in the neck bones that are visible (down to C4). There’s also a measure of anterolisthesis between C3 and C4 neck bones (top bone more forwards than the bottom one). I have annotated it below.August 29, 2016 at 11:22 pm #6005
Thanks for your reply! I wish I could I find an EDS knowledgeable doctor that would be willing to try the Diamox for me. The strangling/choking sensations are provoked by sitting straight up, I will most often get them while driving or in a desk. It took me a while to figure out they were driven by my posture- the first episode caused me to pull over while driving. The only thing the neuro I have seen has recommended is wearing a c-collar around.August 30, 2016 at 5:39 pm #6007
My experience of wearing a soft cervical collar was that it worsened my symptoms, as my head/neck junction wasn’t supported correctly. The Philadelphia collar however did the trick, as it kept my head and neck in better relationship to each other, allowing easier cerebro-spinal fluid flow through the junction, helping to reduce raised intracranial pressure.August 30, 2016 at 5:57 pm #6008
Thank you, I will look into the Philadelphia collar. I am waiting to get the images from my neck- MRI, hopefully these will yield some more insight to my symptoms/pain. My neuro diagnosed me with migraines with aura without headache… seems like he just wanted to pass me along. I have always wondered if high CSF could potentially be causing the stroke-like episodes I have had.September 2, 2016 at 4:52 pm #6014
Well high intra-cranial pressure (ICP), in my opinion, can promote either tachycardia or higher blood pressure, as the body desperately tries to deliver sufficient oxygen to the brain, against this raised ICP.
For migraine, if by chance you are suffering from it, you ought to look at the ‘magnesium deficiency’ connection. In fact, in decades past, they used to give magnesium to lower high ICP (the cheap solution!)
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