I’m so sorry you are going through this, but I think this site may be able to help you. If you are not draining CSF well and you had trauma, or if your C-2/C-1 is not straight, you may be draining CSF even MORE poorly (if that makes sense). Of course I can’t diagnose you over the internet, but I’d recommend that you talk to your doctors about a trial (just a day will tell you if we hit it) of Diamox (no sulpha allergies?). Poor CSF drainage (or too much production) can mimic the symptoms of Chiari or a need for neck fusion. Yikes. I wasn’t able to look down at a desk and work — everything had to be at eye level. I completely understand that!
Did you have a chance to look at The Driscoll Theory? A lot of us with this high pressure (external communicating hydrocephalus) also have mast cell disorders, and our POTS (you may have that, guessing from your description of higher heart rate upon being vertical) is sooooo much better on mast cell medications. If we can shorten and ease your journey, we’d like to do so. Cool?
You’re among friends, here, Melania. Will you keep us up to speed on how you are doing?