That summer I got sick with what we thought was the flu. My mom ended up rushing me to the city hospital which is about an hour and a half away because I started having headaches with continuous vomiting. We went into the ER of the hospital where they did a CT scan and X-rays. I do not remember going into surgery that time. They did the surgery and the shunt was either totally broken or blocked and they replaced it.
The next year I was having a period of headaches again and they found out that the shunt they had just revised was not working and they would have to replace it. I had surgery and the very next day I started having severe pain that only morphine could handle, severe vomiting, and I could not even feed myself. They took an X-ray and found that when my neurosurgeon put the shunt in he kinked the tubing up some where the long shunt tract was and they had to do emergency surgery to fix it.
One day that summer I woke up with a really bad headache. It got worse along the day and I started to have continuous vomiting. My mom rushed me to the city hospital and I was seen by my NS in the ER. He said that I was severly dehydrated and need to stay in the hospital and that he also wanted to do a Shunt-O-Gram. In this test they inject dye into the shunt and watched it flow through the shutn system for a few days.
About a month later, I started having headaches again. I woke up one day with a severe headache that progressed worse along the day. I started vomiting and once again my mom rushed me to the city hospital. Thsi time I was seen by the NS on call at the ER, where they did a shunt tap to relieve pressure and he said I was dehydrated so they gave me some IV fluids. I am sure at this time they did some X-rays but I don't remember. This time I was diagnosed as having a SLOW FLOWING SHUNT and was observed in the ER for a few hours and sent home with no treatment in the form of surgery.
The next year I began having headaches and they found that my shunt was not working so I had to have surgery. The next day the incision and the shunt were draining infection so they had to do an emergency surgery to remove the shunt that was infected. I had to be fitted with an external shunt and be put on strong antibiotics until the infection cleared up. At this time they also put in a central line. I was in the hospital for about a month. About a month later my infection cleared but they had to remove the central line because it got infected. They had to do a third surgery to put the shunt on the side of my head. I went home about 5 days later.
The next year I started having headaches again. I went to my NS. He would not speak directly to me but only to my parents and would do nothing for me. (While on this journey, I lost a lot of vision that I used to have so I decided to go and get a guide dog.)
The summer of 99 I went to California to Guide Dogs for the Blind, to get a guide dog. You had to stay for a month to get the training. While I was there I started having bad headaches, falling, and other things. So they wanted me to go to the hospital to get checked. That was a joke since I was in California and they would not take my health insurance at the hospital but the school agreed to pay for it if my insurance did not cover it. The doctor at the ER called my NS and asked him what he thought he should do. My NS said to do nothing so they did not do anything for me except a CT scan that they said was OK. They also treated me for dehydration. Usually my CT scans would show up normal but my shunt would still not be working properly. When I got home from California I still did not go see my NS because he said that he did not need to see me because he did not think I was having any problems. So I was getting ready to go get soem computer training at a School for the Blind out in Kentucky. I was having constant headaches and there was nothing I could really do for it.
A few years after that I moved out of my parents' house and into an apartment of my own. Hoping that my mom would accept the fact that I wanted to switch doctors and that she would not let me do it when I was at her house, I went looking for a new NS. I started seeking counseling for depression that should have been treated in 1999 because that is when it probably started. I went to my family doctor who referred me to a Neurologist. I saw the neurologist and he put me on a medication for my headaches called Topamax, which is an anti-seizure medication. He reffered me to a different NS.
My headaches got so bad that I called their office to see if I could get a sooner appointment because my headaches were getting so severe. They said that the doctor I was supposed to see was out of town and they set me up to see a different NS the following Monday. I went into his office and this Doctor talked to me like I was stupid and got up in my face because I was blind. He got up in my face just because I was blind and kept holding things in front of me and asking if I could count his fingers after I had already told him I could not. Then he misdiagnosed me and told me that I had a type of hydrocephalus that older people get. I told him that I got mine from meningitis and that should have clued him in. He did not help me so I left and asked for a referral for a second opinion. He referred me to the NS I was supposed to see in the first place.
A week later, I went to a different NS and I told him about my headaches. He scheduled an ICP monitoring study where they drill a hole in your skull and place a fiber optic monitor to monitor the inracranial pressure for 24 hours. I was placed in ICU to have this done. The test did not show anything so he said that it was not my shunt. So, nothing was done and I was sent back to my Neurologist.
I saw the neurologist off and on for treatments and medications for severe headaches that did not work. Finally, in November he sent me back to my NS because the shunt was making funny noises in my head. My NS said that my shunt was probably overdraining and he scheduled me to have a programmable shunt placed in on Dec. 16, 2004. This shunt can be adjusted in pressure settings manually by a magnet.
I had surgery on Dec 16 and was still in the hospital on Dec 25 because of compications with really bad headaches and the doctors having the shutn valve pressure set too high.
Since the surgery I am still having really bad headaches. I have had my shunt valve adjusted twice but am hoping that they will adjust it again soon to see if that will help. I do not work because of my headaches. They cause severe nausea and sometimes cause me to get very sick. I have to be careful about dehydrations. I also have Slit Ventricle Syndrome, which means that my ventriles are slit like and kind of small from having so many surgeries.