
Steven’s Brain treatments
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Update: on 11/2 I got a second opinion with another specialist and he is sending me for a specialty MRI. I also have to be seen by a Neuro-Ophthalmologist. He strongly believes that I have an active CSF leak and it’s the reason for my worsening symptoms and flare ups. He believes I’ve had a leak since surgery and that my original surgeon did not take the proper steps to contain my leak. It looks like I will have to get an LP shunt. He doesn’t want to try to correct the surgery, because it can make everything worse. I’m in a crazy situation right now. I also have pseudomenigocele, which there is a a pocket of CSF fluid sitting by the surgery site. Anything helps and I appreciate the time taken to read this. I just want some what a normal life.
Hello, my name is Steven and in 2021 I was diagnosed with a rare brain condition called Chiari Malformation type 1. And Syringomeylia. I have underwent decompression surgery 5/12/22 and since then my symptoms have not improved. I’ve been to several Doctors in the area and all they can do is prescribe me medication for it. I’m unable to work due to the conditions. I’ve been diagnosed with several other conditions due to Chiari. The reason I'm starting this is for my family and I. My case for disability has stalled and is taking way much longer then it should be. The case was suppose to be settled a few months ago. My program that I was on ended abruptly due to lack of funding. My family and I have been on that to help with rent and utility bills. I’m on a tough situation right now and I don’t like to do this. I had to suck up my pride and at least try. My Chiari herniation is continuing to herniate downwards towards my spine and the back of my brain is starting to slump into the open space where the surgery was performed. I’m very nervous about this and I have to make an appointment with a Chiari Specialist and will have to be self pay.
Organizer
Steven Lopez
Organizer
New Port Richey, FL