I wanted to be able to understand more about how SS affects hearing so I wrote a letter to Dr. Jordan & Dr. Levy to get their expertise on the subject.
Dr. Jordan and Dr. Levy
I’m sorry to be such a burden. I just want to be sure I'm understanding the CNS and the CSF flow correctly. I’m seriously trying my best to understand all of this. Just when I think I’ve got it, I don’t.
I understand that iron is being deposited on Zachary’s spinal cord. What I don’t understand is how does that affect his hearing? I guess I’m confused by the details of Superficial Siderosis and it's affects on the hearing. How does the iron affect his hearing? I want to know exactly how SS affects the hearing. Does it destroy the inner ear somehow? I don’t understand this part of it and because this seems to be the reason for Z’s hearing loss I’d really like to know more about how SS wreaks it’s havoc on this part of the body.
I would be most grateful if you could help me to understand. I’m all about researching and if there are reliable places for me to do this that you can send me to, I’d be greatly appreciative. I would really like to be as educated, as a mother who has a child with SS can be.
I'm trying to understand the flow of the Cerebrospinal Fluid ... Is it true that it is produced in the center of the brain and then travels to the ventricles then down the spinal cord and back? I just want to be sure I understand that it does go down the central canal of the spinal cord and then back up again to the brain, which means it must pick up some of that deposited blood/iron at the base of Z's spine and it drags it back to the brain, right?
Thank you so much for your time
Michelle Huguley
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