April 1, 2015 at 2:33 pm #816eudaimonia1Participant
I guess the orthodoxy considers it a normal variation, with perhaps SOME correlation to IIH??? But do true IIH experts think most of these cases of empty sella are due to intracranial hypertension?
I have an empty sella, and I have apparent CSF leakage (sudden watery flow out of only one nostril, when I bend over, during pounding headache with pulsatile tinnitus and very stiff neck, as well as periodic serous fluid behind the eardrum with no sign of infection or any normal type of congestion, leading to hearing loss lasting a few days)–naturally, since I’ve figured out that I have possible IIH and CSF leaks, my six-month headache and leaks are no more–for now at least (so, I haven’t been able to collect fluid). I’m seeing Dr. Henderson, the neurosurgeon, next week, so I’m trying to prepare.
I have Ehlers-Danlos Classic. My other upper spine issues: vision issues that an EDS expert neuroophthalmologist attributed to posterior fossa and CNVI. Also, craniocervical instability, mildly compressed cord at C5-C6, cervical kyphosis/scoliosis/severely degenerated vertebrae. My upright or supine MRIs did not show any Chiari.April 2, 2015 at 9:40 am #5418Dr. DianaKeymaster
I learned that the experts do NOT consider an empty sella a problem without a high reading with a lumbar puncture. I remember discussing this with the neurologist at Mayo. He said that 6% of “normals” will also display an empty or partially empty sella. I countered that perhaps they should reconsider, if I had EVERY SYMPTOM of high ICP along with that partially empty sella? (doesn’t that make sense? I mean, really…). I think you know from the book about our tendency to develop chronic leaks from lumbar punctures, so I wasn’t going to let them do that just to prove my point! Instead, my kids and I responded beautifully to Diamox. Although we no longer need Diamox, it was a life-saver for a couple of years! 🙂April 14, 2015 at 11:19 am #5430BarbaraParticipant
What I would also ask them to consider is what flattens the pituitary, either partially or fully, if not raised pressure ?
Pituitary problems are grossly underdiagnosed, especially in those who have suffered brain injury.
- You must be logged in to reply to this topic.