I am a horrible blogger, but that's okay because no one reads this anyway. Fair warning: this will be freaking long. I'm still struggling with low pressure during the day and high pressure at night. It's official: my shunt hates me. How can something that is supposed to help you and improve your quality of life do the opposite?
We turned my shunt to the virtual "off" meaning according to the company, it should be draining very little. So, I had high pressure for months with no vomiting (vomiting is a sign of shunt failure). I have an adjustable bed (pretty cool I know) so I just slept upright for months. Then it finally happened. I started throwing up. Great. I only threw up once, but combined with the horrible high pressure I was having that day we decided it was time to make the drive to the er to have a shunt tap and remove some fluid.
My mom called ahead and talked to the neurosurgery resident and he said he would be waiting for us. It wasn't too busy when we got there so we got a room right away. I have a port and I'm so thankful for that! The er doctor could tell I was in a lot of pain so he didn't hesitate to give me iv pain medicine since it works much faster intravenously.
I had a ct to check my ventricle size and see if they were enlarged, which is another sign of shunt failure.
With hydrocephalus the ventricles enlarge.
I have a rare disease similar to hydrocephalus. The difference is with intercranial hypertension, the ventricles do not enlarge so we knew they wouldn't be bigger, but the hospital said it's protocol. I have hydrocephalus as well, kind of. After I had a cranial expansion (taking apart the skull and making it bigger) my ventricles did get bigger, which is what the neurosurgeon hoped for. My shunt has broken since then, but never enlarged again if that makes sense. Hydro is common. It's easier to tell people I have that.
We found out my neurosurgeon/family friend was out of town so I had to see his new partner and you guys, he was his freaking doppelgänger. I swear, same glasses and dorky clothes too!
We got to the er around 4pm and even though we called ahead, we didn't see the neurosurgery resident until 8pm. Although, I didn't think calling ahead would help at all. He decided not to tap due to infection risk and to turn the shunt all the way down to the lowest setting to get the fluid out. BUT since I have a programmable valve, you need the programmer, but he didn't know where it was.
At this point I was pretty out of it. I was in a significant amount of pain and nothing was helping. My mom told him if he couldn't find it within an hour he was doing a shunt tap. He found it upstairs in 30 minutes. It was turned down and I was admitted for the night to watch. Since we turned it down so much and so drastically I had HORRIBLE low pressure so we turned it up a little and that's where I am now. Still having low pressure headaches with horrible back pain as well and high pressure at night.
I have an appointment to talk with the surgeon about either adding a new shunt assistant or switching out one of the old ones. I'm praying he agrees to do something. As much as I hate surgery, I hate being in pain more. I'm miserable and can't really do anything at all because of the pain.
Sometimes people think that since I've had so many surgeries it gets easier every time. The truth is, it doesn't. In fact, it does the opposite. It gets harder. Harder, because this is one more option that you are crossing off the list. Harder, because you know that this is a crap shot. I have hope (not my twin sister Hope). Hope that this may help. Hope that this could be the last surgery I have to have. So that's the end of my saga. For now.
Note: I mention my mom a lot in my posts. She's my best friend and my rock. She has slept on uncomfortable couches and fold out chairs for months at a time. She advocates for me when I can't and does everything she can to provide me with the best medical care and to get the help I need. She encourages and supports me. She means the world to me and I could never repay her for everything she has done and sacrificed for not only me, but my family as well. I'll do the same for her if need be.
At this point I was pretty out of it. I was in a significant amount of pain and nothing was helping. My mom told him if he couldn't find it within an hour he was doing a shunt tap. He found it upstairs in 30 minutes. It was turned down and I was admitted for the night to watch. Since we turned it down so much and so drastically I had HORRIBLE low pressure so we turned it up a little and that's where I am now. Still having low pressure headaches with horrible back pain as well and high pressure at night.
I have an appointment to talk with the surgeon about either adding a new shunt assistant or switching out one of the old ones. I'm praying he agrees to do something. As much as I hate surgery, I hate being in pain more. I'm miserable and can't really do anything at all because of the pain.
Sometimes people think that since I've had so many surgeries it gets easier every time. The truth is, it doesn't. In fact, it does the opposite. It gets harder. Harder, because this is one more option that you are crossing off the list. Harder, because you know that this is a crap shot. I have hope (not my twin sister Hope). Hope that this may help. Hope that this could be the last surgery I have to have. So that's the end of my saga. For now.
Note: I mention my mom a lot in my posts. She's my best friend and my rock. She has slept on uncomfortable couches and fold out chairs for months at a time. She advocates for me when I can't and does everything she can to provide me with the best medical care and to get the help I need. She encourages and supports me. She means the world to me and I could never repay her for everything she has done and sacrificed for not only me, but my family as well. I'll do the same for her if need be.
No comments:
Post a Comment