Many of you have been asking so I thought I would take this time to dive into a little more detail about my condition and my upcoming surgery. So I was born with hydrocephalus, just bad luck really. I was born 3 months too early and not ready for the world yet. It is Greek for water on the brain. I had excess fluid on my brain and it was causing pressure on my brain. However, I was lucky. I was born in 1984 and they knew about my condition and how to fix it. Had I been born any earlier and they probably would not have had the technology or knowledge to know how to help me.
The doctors decided to implant a VP shunt on my brain basically a one way check valve that was gravity fed that drained the excess brain fluid via a tube into my stomach lining to be absorbed. This setup worked fine for me (after 3 different shunts from the doctors!) until I was 13 years old and the tube broke. I started having headaches and vomiting and the pressure was increasing on my brain I knew something was wrong! The doctors went in and gave me another tube and all was well until I was 35 years old.ç
My original shunt from 1984 was designed to work for 10-15 years but it lasted me until 2020. In June of 2020 this whole saga started. I won't rehash everything but basically the old shunt broke and they tried to reuse the one I had but were unable too.
I have had 4 operations since June of 2020, and they decided to implant two programmable vp shunts to control the four ventricles in my brain. So I have one shunt and tube controlling three ventricles and another tube and shunt for the 4th ventricle.
The problem (in addition to my lazy eye) is that the shunts and ventricles are not playing nice. They are not talking to each other as they should and they are getting out of whack and everytime they do this I have to go back into the hospital and the doctors have to adjust the pressure of my shunts (luckily with these new shunts they can adjust the pressure via magnets and don't have to operate every time)
But for two years now they have not been able to get the pressure right and get me fixed on a permanent basis. It is extremely hard to work or have a normal quality of life when you are living with this uncertainty. I never know how good I will be or for how long. Every time I go bad again, I have to go back into the hospital and my speech and walking are affected. My whole life gets turned upside down.
So my doctors here in Spain finally decided to operate. Their plan was to remove one shunt, put in a stent and allow the four ventricles to talk to each other again. Basically restoring me to how I was before June of 2020. I was very happy that they had finally found an option to (hopefully) get me back to normal! Of course any brain surgery is scary, I was worried about losing my memories or my ability to speak etc. But it was (and is) really the only option left.
However, I found out today that they are delaying my operation. I am ¨good¨ since my last hospitalization/adjustment and they don't want to mess with anything if they don't have to. But I have been here before. I will probably be good for a month or so and then get all out of whack. Of course it is possible that this time they really did find the correct pressure and fix me for good. The good news is that I can spend the holidays with my family and not in the hospital. They have told me if I go bad again, then they will operate so at least I know that I do not have to deal with this forever.
I know this was quite long but hopefully if you made it this far you have a better understanding of my condition and what I have been going through. I tried to avoid technical language hopefully I did ok.
P.S. Even though I have had some struggles (had to go back to rehab and speech therapy) I am doing much better than some others out there and I consider myself the luckiest man alive to be alive and to get to hold my little girl every day and love on my wife and my family and friends. I couldn't do this without yall. Thank you.
Take care, Tyler