Kim, 62

One morning, as I woke up and got ready for work, I felt nauseous. Soon, the nausea turned into projectile vomiting, along with feeling hot, dizzy, shaking and sweaty. I decided to take a trip to the ER.

I was fast tracked into the ER and they suspected a stroke. A CT scan showed a large buildup of cerebral spinal fluid (CSF), and I was scheduled for an MRI that afternoon. The shocking results showed a Chiari malformation, a large syrinx and hydrocephalus. You could have knocked me over with a feather. The only symptoms I had were intermittent nausea for approximately two weeks prior, which my general practitioner had chalked up to vertigo.

After getting the diagnosis, my general practitioner referred me to a neurosurgeon. I felt so blessed because my neurosurgeon was fabulous. I saw him the following week and he admitted me that day and scheduled me for brain surgery. Within a few days, he operated and placed a ventriculoperitoneal (VP) shunt.

By the time I was taken to the operating room, all of my symptoms had gotten so much worse. My symptoms included vomiting, dizziness, blurred vision and my walking had turned into shuffling around like a 100-year-old. It felt as though I was walking through the sand.

I was so grateful for the amazing care I received from my neurosurgeon and the neurology team. The first 24 hours after surgery was the most difficult. I had never done well with anesthesia or narcotic pain medications, but once they were all out of my system I felt reasonably well.

Fast forward two more weeks, I was back in the hospital to undergo a Chiari decompression. Seven hours after being put under anesthesia, I awoke in the neurology ICU. I was wired for sound with cables and cords coming from everywhere. I was surprised in how little discomfort I was experiencing once I was fully alert. There was no need for more narcotics and I was thankful for that.

I stayed in the hospital for two days and it went very well, but my recovery at home was a struggle at night. I was forewarned that sleeping in a comfortable position with a good pillow was paramount and that my neck muscles would contract and stiffen during sleep. They were so right. Thankfully, that only lasted about a week.

I have had my shunt for just over four years. I did have my valve adjusted about a month after surgery, changing the programming from a five to a four because my vomiting had returned. Since then, I have been fine.

Living with a shunt doesn’t give me a carefree life, but it does not restrict me very much as long as I listen to my body. I have noticed that barometric pressure has a definitive effect on me. It causes intermittent headaches, eye pressure, slight nausea and a general feeling of lethargy. As long as I listen to my body and don’t push myself, my symptoms subside.

I turned 62 this year (2022) and I take into account the changes that come with growing older. I keep myself fit, eat right and sleep well.

This past summer, I did start to have some recurrent hydrocephalus symptoms and my neurosurgeon advised that the setting on her shunt be changed back to five to see if it would help. I did not want to try that, so my neurosurgeon gave me some good ideas and sleeping modalities to try. He helped me find a pillow called a zipper head pillow for better head positioning when sleeping. In addition, he offered advice on how to counteract the symptoms that come with over draining, which turns out that was causing my symptoms after all.

I recently joined the slit ventricles and see so many people having issues with their doctors not listening to them. Even though I didn’t experience the same thing, I appreciate everyone’s story, trials and tribulations. My doctors have helped me in every way to keep my symptoms at bay and avoid surgery.

I feel that it is very important for doctors to listen to their patients and realize they are not hypochondriacs. What they all feel is very real. But it is up to everyone to be their own advocate. I have worked hard to understand everything that has happened and continues to affect me, to know my limits and enjoy life to the fullest. I truly appreciate everyone’s testimony and have a strong sense of belonging to an amazing group of hydro warriors.

Tell us about your journey with hydrocephalus!

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