My 22 year old daughter was diagnosed and received a VP Shunt for a diagnosis of hydrocephalus 2 1/2 years ago. Her symptoms were quite unusually and not typical for hydrocephalus (syncope on rising,headaches,pixilated vision). Within a year or so, her symptoms of syncope came back periodically and we attempted to get help from her Neurosurgeon. The doctors office would simply order a CT Scan and advise her the CSF fluids and ventricles were acceptable in appearance and to call if she has problems. The syncope has become much more prominent over the last month along with ongoing headaches and new symptoms. The new symptoms include ringing in the right ear, and right pupil dialation that comes and goes. Again, Neurosurgeon ordered a CT Scan and advised that the ventricles are within normal limits.
Each time I see the CT Scan report there is also a mention of possible agenesis of the corpus callosum. We attempted to contact UCSF medical school last year regarding a brain study involving the possible agenesis of corpus callosum but after sending in all of films (MRI and multiple CT Scan films) we were advised she was not a candidate for study as the corpus callosum appears to be fully formed and simply appeared stretched by the congenital hydrocephalus that had gone undetected until she was 20 years old.
We are baffled by the lack of concern the medical staff shows her regarding her symptoms and issues that are creating medical concerns for her. We have asked about the Corpus Callosum factor but this was simply ignored. I know how important the CT Scans are but these do not address her ongoing symptoms and right now that is something we are wanting to address. I have gone on to do a little computer research and her symptoms actually match up very closely to someone with a corpus callosum disorder. She even had a midline ureter obstruction that had to be surgically repaired at age 13.
We just want to know if we are on the wrong track for getting her some real help. The hydrocephalus was originally noted to be moderate to severe and I believe the VP Shunt has relieved a great deal of internal brain pressure but these episodes of blackouts, vision pixilations, headaches; and the more recent ear ringing and single right pupil dialation are really concerning.......Is it possible that going back to the Neurosurgeon is our mistake and perhaps we need to find a Neurologist to be her gatekeeper and help stay on top of the symptoms? She certainly does not want additionally surgery however there are definite concerns about the symptoms she is experiencing. She is a recent college graduate, living on her own and the near syncope/blackout spells leave us all concerned for her safety.
Any input on the best process for getting the best medical care team and getting the focus on resolving the symptoms that plague her life right now would be greatly appreciated. It just feels like everytime she goes to the Neurosurgeon for help, they order CT Scan and tell her everything is fine.....but she knows better and they won't listen, as a matter of fact they won't even make her an appointment to see the Doctor himself, it is always the assistant that addresses her over the phone and assures her no appointment is necessary.