I have hydrocephalus, but it doesn't have me. I have struggled with medical issues, and this struggle has helped shape me, but it doesn't define me... I am no stranger to doctors, hospitals, and surgeries. I have had 19 shunt-related surgeries, 6-7 eye muscle surgeries, wisdom teeth extraction under general anesthesia, c-sections, a tonsillectomy, and a hysterectomy.
I have had hydrocephalus since just after I was born. In my first year, I had 9 shunt surgeries. One of those surgeries was to treat an infection. While they were dealing with the infection, pressure built up and caused eye problems, so I also had a few eye surgeries in that first year.
Hydrocephalus and the process of treating it in that first year could have caused so many problems: I could have been blind, deaf, or even vegetative. By the grace of God, I only deal with mild learning disabilities, memory issues (which is the worst in the couple of years after a revision), and slow motor skills, which includes speech. We had no idea how long that 9th shunt would last. As a child, I had a handful of eye muscle surgeries, but my shunt kept working.
As a child, because of the slow speech & struggles with academics, I ended up with some social struggles. I was bullied because I was different. I was called names that I will not repeat here. Adults excused the bullying: "I was the new kid," "boys will be boys," "suck it up. You're too sensitive," "to have a friend, you have to be a friend." I felt like I just wasn't good enough and never would be.
I had to wait until my 10 year reunion to hear that people admired me for accepting everyone & not being in a clique. I wasn't in a clique because I wasn't accepted. I accepted everyone because I knew what it felt like to not be accepted. People came to me about struggles, & I helped them, even if they were one of the people who were unkind to me. They told me I was easy to talk to about anything, but that didn't change how I was treated outside these one-on-one interactions.
As an adult, I have had one more eye surgery & 10 more shunt-related surgeries, 7 of them being between April and October of 2020.
Let's jump back to the first one... in Spring of 2003, I was in my second semester of college and started dealing with debilitating migraines, worse than I had ever had in high school. The meds wouldn't touch them, and I started falling asleep on the bus on my way home from school or work, which would lead to missing my stop. This went on until I went to Glennallen to another school fall of 2003. That schoolyear, my symptoms continued to get worse and worse. I could only stay awake in class if I kept my hands busy in class, so I crocheted. The extreme cold outside helped keep me awake outside. Spring semester, I started alternating between extreme insomnia & having days where I didn't even wake up. During spring break, I just slept to escape the pain, because meds didn't do anything. Eventually, after a few times of sleeping for 2-3 days straight, I went to the neurosurgeon and found that my shunt had disconnected. I had surgery to replace it and missed the rest of the semester.
A year and a half later, I got married and moved out of state. I told my husband about what had happened, but just the basics, because I thought the new shunt would be good for 20 years. Three years after the replacement I had just gone through, less than 2 years after getting married, I got an infection and my shunt failed again. My husband recognized what was happening when he couldn't wake me up. They said it was because the old system had been left in and the extra surface gave opportunity for bacteria to cause an infection. The new doctor removed both & put in a new one. That one lasted 11 years, through 3 pregnancies.
In 2018, my shunt started to fail, and we recognized the symptoms before it got to the point of not waking up. I found an awesome neurosurgeon who listened to me and agreed that we shouldn't wait for it to get to that point. He replaced the old system with a programmable shunt.
Last year, I started having symptoms that I suspected might be shunt-related, but I hesitated going in because of everything I else going on. Easter morning, my husband couldn't wake me up, so he took me in. I woke up that afternoon in the recovery room, and my first thought was "oh, no... not again." I knew exactly what had happened.
Each shunt failure has been a little easier to recognize, for the most part.
Last year's surgeries were a little different from previous surgeries. The one at Easter was from a clog, but they couldn't see what caused the clog. That surgery was a "flush & reconnect." Jun 8th, I went into the ER for something completely unrelated, but that completely unrelated thing became the cause for another clog & shunt failure. An ovarian cyst had grown to a point that it was painful to stand up of move. I went in for the pain from that cyst, & when it ruptured, it clogged the shunt tubing. So, on the 8th, they tried the "flush & reconnect" that had worked 2 months ago. 24 hours later, symptoms were worse, so the system was removed, & an external shunt was placed. But part of the tubing broke off, so that led to general surgery going in to take out tubing on Friday. That meant having an external drain for a few days, then have the tube re-internalized.
As a general rule, each surgery has required a longer recovery time than the previous. I am thankful that I am getting better though. I think the hardest part for me is the non-physical effects. The brain is the control center for everything else, so pressure on the brain, & the effects of the surgery itself affect pretty much every aspect of my life: mental, emotional, & physical.
Last summer, a few nurses noticed something different about me from all their other patients: Joy. They commented that I am always smiling, even after these major surgeries. Even after having 4 major surgeries in 2 weeks. I am thankful that this is what they see. I am thankful that they started asking how I was still smiling through all of this. I am thankful to know that I have an opportunity to be a light. God doesn't promise us that we won't go through storms in this life, but He does promise that we don't have to go through them alone. He walks through the storms of this life with me.
One thing that has been different about the last few surgeries is that I have not had to cut all my hair off to avoid painful hair ties, clips, & pins touching or pulling on my scalp. I can put my hair up to keep the weight from pulling on my head, & pull it back in hairstyles that cover the incision without causing extra pain. The week leading up to the 5th shunt surgery of last year, nurses enjoyed coming in to brush & braid my hair, & I enjoyed the company.
I was home less than 3 weeks after that round of 4 surgeries before I had to go back and have 2 more: one to temporarily externalize the tube again, & one to put it back in, this time as a VA shunt, which drains to the heart. This was because I had developed a pseudocyst on the end of the shunt catheter. This took me to a lifetime total of 19 shunt-related surgeries so far.
Since the surgeries to place the VA shunt, I have only had to go back a few times to adjust the flow of the shunt, but the hydrocephalus headaches are gone. I can say that I have seen God's hand on me through all of this, and I know 1. That I am not alone and 2. That God has a purpose for my life.
My hair is still growing out from the last 6 shunt surgeries, but my hair accessories have been wonderful for dealing with this. In my groups on Facebook and MeWe, I share more about this. I want to be able to help others who have dealt with or are currently dealing with similar struggles.
#BlowingBubblesWearingBaubles #Hydro #hydrocephalus #HydroWarrior
Jeremiah 29:11
For I know the plans I have for you says the Lord. Plans to prosper you and not to harm you. Plans to give you a hope and a future.
Roman's 8:28
And we know that all things work together for good to those who love Him, to those who are called according to His purpose.
Hebrews 13:5-6
And let your conversation be without covetousness, for He himself has said "I will never leave you, nor forsake you.
So we may boldly say "the Lord is my helper. I will not fear; What can man do to me?"
Because one of the shunt clogs was caused by ovarian cysts, and the hormonal treatment for those cysts was not actually helping the cysts but was causing more migraine headaches, I finished the year 2020 with a total hysterectomy on December 10th. I am thankful to be blessed with such amazing doctors.
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