March 10, 2018 at 10:51 am #1155JolleyBeanParticipant
Wow, no idea how we’ve missed your forum! Been looking for information for a few years so it’s crazy today is the first time! Communities are terrific for interacting and information- our 19 year old son could use a lot of both. EDS can be isolating. He’s gone from a pretty normal life to almost no social life. We’re zeroing in on the single most debilitating aspect- the ridiculous headaches he’s had since gosh, 3rd grade? If they could be solved, the rest, he can deal with. Not just headaches- they’re what prevent him from being OUT there. He’d also had a nasty concussion ( pre-EDS diagnosis, football…. )
Now to tempt him to please come have a look at this forum.
They’ve gotten worse and constant. EDS doc ordered a 2018 MRI, ( first an upright, which the insurance accepted but those over them declined )suspecting a hernia, sent us to a neuro, we thought GREAT, he’ll have some relief. She was baffling. Stated the report read ‘ normal ‘, refused to read the MRI for another 3 months, when we would ‘ discuss ‘ it, raised her voice and said she would STEP from the room now. ( please note none of us were arguing ) And she sure did. We’ve been doing this for a lot of years. No offense to techs- we just wished the neuro to please read it? We’ll go elsewhere, ( quietly ) just to ( quietly ) get this kid some relief. Someone who reads these said ‘ slight hernia ‘, 3 perspectives seem to show something amiss- but it’s like pulling teeth.
Can slight hernias cause headaches and the other symptoms, please? Also, including a snip of his eyes- is that right? Sorry to ask so much. Thank you, if it’s not a lot to ask?March 13, 2018 at 4:05 pm #6263Dr. DianaKeymaster
HI and welcome to the forum! The only thing I can tell from these scans is that the pituitary gland is slightly squished (we call it a “partially empty sella”). This can be from high intracranial pressure. Can I assume you have a copy of The Driscoll Theory? It describes the symptoms of high intracranial pressure for you — worth a look! 🙂
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