So, I've been in recovery for a month. And let me tell you, it's been a journey. I will tell what happened to me so that people can see the good and the bad and a different experience. The more information you have the better equipped you are.
The morning of the surgery, which they moved up a week due to complications, was a rushed one and I was nervous as hell. We get to the hospital and within 15-20 minutes, I was prepped and in surgery.
When I woke up, and remembered waking up, I was on the neuro-surgical ICU floor with monitors and such connected. Everything was good for the first few hours. Then, I felt a knot in my hair and went to fix it (Ladies...you know how annoying those things can be). Well, it was a knot, but it was around the ICP monitor wire and I didn't realize it until I tugged a little. Needless to say, when I realized my mistake, I panicked. It turned into a full blown panic attack that night around 8pm when the monitor we noticed, stopped working all together. NO readings!
The next morning, a representative with the monitor company came in to check the monitor as the night before, we tried to switch the actual computer part and nothing worked. We found out, after about 30 minutes, it was the monitor in my head. It acted like it shorted out. My neurosurgeon came in and told me this was the first time in the 75 procedures he's done that this has ever broken. He said to stop eating and drinking and that at 6pm, I was going back into surgery to place a new monitor in my head.
When I woke up, I couldn't see out of my right eye and I was back in my room in ICU. The anesthesiologist, an eye doctor and my surgeon come back into my room to look at my eye and somehow, they abraised my cornea. So, I had to have drops and ointment put in and cover and tape my eye closed so it could heal. The 18th was talk like a pirate day so I dubbed the 19th, dress like a pirate day.
The new monitor was working good and reading everything. I stayed in the hospital for a couple more days and we realized that the machine/monitor was not calibrated correctly so the reading were inconclusive and not accurate. It also doesn't help that my doctor wanted me up and walking around as if I was home but the nurses on the floor would NOT let me up to even use the potty without them hovering over me. I had to kick them out and force them to close the blinds to my room for the privacy of using the potty.
Now, a month and 10 days later, I am still receiving no help from my neurosurgeon or his office. Since the follow up in his office on October 2nd, I have had non stop headaches with blurred vision and sometimes black spots, stars or loosing my balance. I couldn't take it and even went to the ER on the 15th where they did a spinal tap. My opening pressure was 52; the highest it's ever been since finding out about the condition. The ER doctor wasn't comfortable dropping my pressure any lower than 30 millimeters of mercury due to the pressure being so high. When I informed my surgeon of it the elevated pressures, they immediately set me up with a fluoroscopic guided spinal tap with my surgeon and an eye appointment.
According to my surgeon's PA, they don't believe I have this condition so that is why they are not doing anything. That is why they sent me to a pain clinic where the doctor just looked at me and asked me this past Thursday what my surgeon was hoping to accomplish as no amount of narcotics or injections would treat the pain. He blatantly told me that I needed a shunt and that he doesn't like my surgeon as he is known to not help his patients when they really need it most.
So, we are at a stand still and a waiting game.
The morning of the surgery, which they moved up a week due to complications, was a rushed one and I was nervous as hell. We get to the hospital and within 15-20 minutes, I was prepped and in surgery.
When I woke up, and remembered waking up, I was on the neuro-surgical ICU floor with monitors and such connected. Everything was good for the first few hours. Then, I felt a knot in my hair and went to fix it (Ladies...you know how annoying those things can be). Well, it was a knot, but it was around the ICP monitor wire and I didn't realize it until I tugged a little. Needless to say, when I realized my mistake, I panicked. It turned into a full blown panic attack that night around 8pm when the monitor we noticed, stopped working all together. NO readings!
The next morning, a representative with the monitor company came in to check the monitor as the night before, we tried to switch the actual computer part and nothing worked. We found out, after about 30 minutes, it was the monitor in my head. It acted like it shorted out. My neurosurgeon came in and told me this was the first time in the 75 procedures he's done that this has ever broken. He said to stop eating and drinking and that at 6pm, I was going back into surgery to place a new monitor in my head.
When I woke up, I couldn't see out of my right eye and I was back in my room in ICU. The anesthesiologist, an eye doctor and my surgeon come back into my room to look at my eye and somehow, they abraised my cornea. So, I had to have drops and ointment put in and cover and tape my eye closed so it could heal. The 18th was talk like a pirate day so I dubbed the 19th, dress like a pirate day.
The new monitor was working good and reading everything. I stayed in the hospital for a couple more days and we realized that the machine/monitor was not calibrated correctly so the reading were inconclusive and not accurate. It also doesn't help that my doctor wanted me up and walking around as if I was home but the nurses on the floor would NOT let me up to even use the potty without them hovering over me. I had to kick them out and force them to close the blinds to my room for the privacy of using the potty.
Now, a month and 10 days later, I am still receiving no help from my neurosurgeon or his office. Since the follow up in his office on October 2nd, I have had non stop headaches with blurred vision and sometimes black spots, stars or loosing my balance. I couldn't take it and even went to the ER on the 15th where they did a spinal tap. My opening pressure was 52; the highest it's ever been since finding out about the condition. The ER doctor wasn't comfortable dropping my pressure any lower than 30 millimeters of mercury due to the pressure being so high. When I informed my surgeon of it the elevated pressures, they immediately set me up with a fluoroscopic guided spinal tap with my surgeon and an eye appointment.
According to my surgeon's PA, they don't believe I have this condition so that is why they are not doing anything. That is why they sent me to a pain clinic where the doctor just looked at me and asked me this past Thursday what my surgeon was hoping to accomplish as no amount of narcotics or injections would treat the pain. He blatantly told me that I needed a shunt and that he doesn't like my surgeon as he is known to not help his patients when they really need it most.
So, we are at a stand still and a waiting game.