I'm new here... Was decompressed in '98, just found out my cerebellum is falling thru my decompression hole... Sorry to be so graphically descriptive

Hi, I’m Nancy or Mrs. G. I was diagnosed and decompressed back in '98 aand had a sunt placed in my spinal chord shunt in '99 and have been pretty much stable since then. I just found this sight yesterday. I have had my share of symptoms over the years, migraines, numbness and tingling, lump. In my throat, jaw, ear, neck and back pain, etc. For some reason, I have a pretty high tolerance for pain, or I’ve probably just gotten used to it. BTW, I have hydrocephalus (shunted) and syringomyelia (also shunted).

Well, to make a long story short, about 2 months ago, out of the blue, I began having visual field changes. It seems as if I have a line that runs horizontally, in line with my pupils, across both eyes. The line is transparent, but is definitely there. Plus, from the point of that line down, it’s as if I am looking thru shear gray fabric. I can see thru that too, but still it’s there. So, i went to the NS who has been following me here in the Milwaukee area. I am originally from NW Indiana and was decompressed there. The doc I’m seeing here has never operated on me here, he’s just monitored my symptoms. For several years he saw me for almost daily migraine. So, this doc ordered an MRI to see what my VP shunt and hydrocephalus were doing. He’s always worried about my hydro and the shunt, he never really talks about my Chiari. Well the MRI showed that my shunt and hydro are fine, but that my cerebellum is falling through the space left by the decompression surgery. This doc says he knows what needs to be done, but isn’t quite sure how to do it. So he said he plans on presenting my Case…

To 8 of his colleges, 1 of which is a doc from U of Iowa with lots of Chiari experience (are we allowed to name docs here? ) he wants to find out, what needs to be done to fix me and then he wants to do the surgery. This makes me soooooo nervous!! I know my medical records are on their way to the doc at U of Iowa. Today, I tried to make an appointment with that doc, but was told I can’t unless my doc here refers me, or if after the Iowa doc reviews my case and requests to see me.

So, has anyone here had this same
Problem and if so how was it “fixed”? And what are the policies for discussing and recommending doctors?

Thanks for reading,