July 16, 2018 at 7:27 am #1173DianeParticipant
My Heds child was accepted into Dr. Diana’s Hydrocephalus study a few years back. He has now developed severe blurred peripheral vision where he can see 3 or 4 letters while reading and everything external to that is blurred. He’s been evaluated by our local Children’s hospital Opthalmalogy, neurology and Visual PT departments and they’ve found nothing. He’s had Mra/I’s, ct/a scans, opthalmalogy did every test, including peripheral field and micro scans. They suggested that my bright 13 year old may have just realized every letter is not in focus as we read and that is normal. I explained he said this is a new symptom but she was keen to say there wasn’t a problem because they could find no problem. Even the peripheral field test showed normal but it’s based on being able to detect bright lights, not how clear or blurred they are. The neurologists say there’s no sign of Chiari malformation.
So, my first question is could this type of visual problem be related to hydrocephalus? He is 13 and in the last month has also developed severe sadness/depression, but only at night. A few days ago woke with a severe headache, vomited and the headache was gone, the vision issue came on in November, faded to almost normal after a few months and is back again. He’s had migraines for years now, does have a high palate, he’s been falling for no reason in the last month, poor memory, has irritability.
So, with all of the experts having gone over this imaging, is it possible they missed some of the subtleties described in the Driscoll theory? Or, there’s mention of an fMRI in the theory, I know there was an MRA done which showed blood flow. Is an FMRI which is mentioned in the theory able to show something additional? What additional testing can they do? My son has given up his computer with the vision issues which is a very big deal to him. The more I read the theory the more concerned I am that permanent damage is being done if this is his problem. Any advice or suggestions would be greatly appreciated.July 21, 2018 at 8:51 pm #6292Dr. DianaKeymaster
Hi Diane, I am so sorry to hear this about your son! I can’t tell you what is going on without taking a close look at everything, of course, but like you I would also be concerned about high intracranial pressure. We ran three different studies on this potential issue and I don’t know which study you were in, but in our last one we treated folks with Diamox to help us diagnose these difficult cases. Diamox can be used as a diagnostic tool (and my neurologist uses it as such with his patients, too). But a close evaluation is always required first. We see SO MANY cases where this IIH doesn’t present as typical, but we can usually find evidence of it with some sophisticated ocular studies and review of the brain MRI. If you get stuck, we offer evaluations/treatment for IIH at POTS Care. You can call us at 1-866-349-9905. We’d love to see you again! xxooJuly 25, 2018 at 2:28 pm #6295DianeParticipant
Hi Dr. Diana,
Thank you for your response. I shared the Driscoll Theory with my son’s Neurologist and
received a response that there is no sign of high intracranial pressure from all of his imaging
and they would not be willing to do a trial of Diamox or any other similar drug. I will contact you
at the number you’ve provided. For my information, is it typical that this would not be noticed
on Mri/a’s or ct scans? Is it a matter of communicating to the radiologist something additional
that is easily overlooked? Thanks so much.
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