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Hi Dr Dianna I have a question I had a mra done in feb and june of this year on the report it said everything is normal along with my neurologist at that time. Well I’m at the same neurology office they just switched my dr and my new neurologist showed me an image of my arteries in my neck and she pointed out how my left side was narrowing but didn’t explain anything other than showing me the difference on the right and left side which was very noticeable and she had circled a spot on the top of my brain but also didn’t explain what any of this meant. I do have huge veins/arteries that pop out of my neck on a regular basis. If my hair isn’t covering my neck you can see them clearly and my neck looks kind of deformed. Could any of this have anything to do with hydrocepholus/pseudotumor cerebri or the pain I was having at the base of the skull & the head pressure? I’m still on diamox and cortef was added almost a month ago I haven’t had much pain at the base of the skull or as bad. my neck and shoulder pain has improved with diamox and got even better once I started the cortef. But my neck still looks deformed with veins and tendons popped out. Also my report from my dopler says normal but my new neurologist says I have valvular disease. I’m getting confused as to what to believe and what not to believe! Ugh!! I think I’m ready to submit my form for a consultation with you:)
Jamie:)Hi Jamie,
Do you have your raw daMN data on disk? That is very important to get. Sorry I don’t have any answers to your questions but, I thought it would be important for you to know to get your hard copy of the MRI. I have a lot of funky veins and arteries and so does my family. Both internal and externally. It hard to know what is because of EDS and what is not.
Shonda
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