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How often do you see your neurologist?
I've had a VP shunt since I was 6 months old due to an issue at birth. My last issue with the shunt was in 20 years ago when I was 7. I have not seen a neurologist since high school when I needed to get sign off to play football.
Fast forward to a few days ago and my clothes iron fell on top of my shunt in my laundry room (Ouch!). This prompted me to go get seen by a neurologist since its so long overdue and my prior neurologist/neurosurgeon is pediatrics...and the pressure headaches behind the eyes I've been having since this happened. So, how often do you all go in and see your neurologist? I'd really like to be more consistent with being seen; God forbid something happen and I don't have a neurology practice. |
Where do you live that your hydrocephalus is managed by a neurologist? Right now we live where my daughter has a pediatric neurosurgeon but for a few years we lived outside the U.S. where a neurologist managed her care (no revisions during that time). Went to a transitioning talk recently where they talked about how hard it is to find a surgeon who will take a new patient on when one ages out of pediatrics. Kids generally see a surgeon once a year where we live, but imaging can be less frequent, our docs want imaging every few years if one has been trouble free. I don't know what the recommendation for adults is, got the impression baseline imaging is infrequent. She does see a neurologist every three months or so for seizure issues. I've never met a neurologist who knows much about hydrocephalus and a lot of adult neurosurgeons don't sound interested either based on extra overhead for such patients, better pay with just straight up surgery I think.
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My primary care is the one who referred me to a neurologist and supposedly flagged it as ASAP, but the neurologist hasn't even returned my phone call. Might try and get my primary care to switch it. At a minimum, I'd want to get updated MRI and/or CT scans done. Since its been over 20 years since the last time I've had any imaging done and since the iron fell I've been constantly taking OTC medicine for headaches and difficulty concentrating. |
My story's a bit similar to yours. I haven't really had any shunt issues since my last revision 15 years ago. The last neuro visit I had was 10 years ago due to migraines.
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