- This topic has 1 reply, 1 voice, and was last updated 2 years, 7 months ago by .
- You must be logged in to reply to this topic.
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?
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! 🙂
This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.
“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”
-- Chris Gross