Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
A collaborative of my good docs has submitted a referral to Johns Hopkins Headache & CSF Disorders Centers on my behalf. It is in the works according to the endless middle-men, but I have no idea how long referral-to-intake process will take. Am assuming Ill wait quite a bit.
So, Ive have all the high-ticket item diagnostics we could think of run at our university hospital over past 2 years (cerebral angiogram, some Ig bloodwork, etc.) hoping that these wont need to be repeated. The referral requested diagnoses and treatment plan(s) that can be implemented here locally. Im ready to send 2 years worth of records/scans/reports/labs, etc. at a moments notice.
My current insurance runs out in November sometime at which point Ill be rolled into Medicare (owing to SSDI). So, time is quickly becoming of the essence.
What might I expect? Going back to an earlier post, how in blazes does Hopkins make sense of the chaos called my medical chart?
While everyone round me is very excited at this opportunity, I am both excited and quite nervous that Hopkins will take one look at my Bi-Polar DX and diagnose based on that alone. I DO have a rather long note from my current prescribing psychiatrist detailing that my BP is mild and well-treated, plus hes approved use of any medications/procedures that will treat the headaches & other symptoms first as long as he stays involved. Thats not a problem.
Guess Im just jumpy from the less-than-positive experiences Ive had with neurology over past couple of years, plus the fact that my pressure is now just below 25 cmH20 while on Diamox.
What think thee?
So, Ive have all the high-ticket item diagnostics we could think of run at our university hospital over past 2 years (cerebral angiogram, some Ig bloodwork, etc.) hoping that these wont need to be repeated. The referral requested diagnoses and treatment plan(s) that can be implemented here locally. Im ready to send 2 years worth of records/scans/reports/labs, etc. at a moments notice.
My current insurance runs out in November sometime at which point Ill be rolled into Medicare (owing to SSDI). So, time is quickly becoming of the essence.
What might I expect? Going back to an earlier post, how in blazes does Hopkins make sense of the chaos called my medical chart?
While everyone round me is very excited at this opportunity, I am both excited and quite nervous that Hopkins will take one look at my Bi-Polar DX and diagnose based on that alone. I DO have a rather long note from my current prescribing psychiatrist detailing that my BP is mild and well-treated, plus hes approved use of any medications/procedures that will treat the headaches & other symptoms first as long as he stays involved. Thats not a problem.
Guess Im just jumpy from the less-than-positive experiences Ive had with neurology over past couple of years, plus the fact that my pressure is now just below 25 cmH20 while on Diamox.
What think thee?
Good luck! Sounds like it might be just the step you need!
I like that you can click on the links to get the headache definitions
http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/headache/conditions/
dont know if there is any other relevant stuff for you PC dont know if it is an up to date page....
I think the defs they present are a tiny bit old-school in some regard, but otherwise a pretty good primer resource for the public. What's also interesting to me is how many other medical shops have pilfered Hopkins' language for their own websites -- or maybe there's mutual pilfering? Da da da...
I have to say that I've got a little anxiety about their Toe-the-Line definitions of what IIH or Occipital Neuralgia are, how IIH presents (pressure > 25), demographics, etc. BUT, that the CSF Disorder Clinic truly works hand-in-hand with the HA Center makes me hopeful. Regardless of my actual pressure, there's no one who can disregard 6+ years of CSF disorder. So...onward one goes!
Thanks for taking a look and sending link -- always great to have many eyes ready to help out! Wish we could magically pack you in the rollie bag to come with.