Carly

I was born at 26 weeks and weighed 2lbs 4oz. I developed a grade three brain bleed, which turned into a grade four. This caused my hydrocephalus. I had a total of six surgeries during my 4-month stay in the NICU, and had a shunt placed at 4 months old before I went home from the NICU.

I had my first shunt revision at 13 months old because I grew quicker than expected, and my distal catheter became too short. I was good until I was 9 years old, when I had my second shunt revision. Then, when I was 16, I had revisions three through six.

In April of 2015, I had my third revision due to intermittent shunt failure. Then, on June 1st of 2015, I had my most traumatic shunt malfunction while I was at school, and 911 had to be called. I was transported to the hospital where my neurosurgeon at the time was. The next morning, I had my fourth shunt revision. Then, later that day, I had an MRI, and the shunt wasn’t in the right position, so I had to go back in the next day and have my fifth revision. I ended up with another shunt malfunction a week later, which ended with me having my sixth revision. Then, on October 13th, I had my seventh shunt revision.

A week later, I had my eighth revision. During this revision, the neurosurgeon disconnected my shunt that was on the side of my head and placed a new one in the back of my head, and reconnected it to the new one (supposedly). I didn’t have the old “non-working” shunt removed because I was told it would do more harm than good. I had enough with my former neurosurgeon, and I decided to make a switch.

I went to NYU and was admitted two different times. In March 2016, I was admitted to my local hospital for intestinal adhesions and a small bowel obstruction. I met my current neurosurgeon during this hospitalization. It was a good thing we met him when we did, because on May 13th, two weeks before prom, I was sleeping and my pillow was all wet, and so I felt my head and it turned out that the spot where my “non-working” shunt was located was leaking. We went to the ER, and I told my neurosurgeon, and he said he was going to remove it and that the fluid that was leaking was cerebrospinal fluid (CSF). After the surgery, he told us that the supposedly non-working shunt was actually functioning, so that’s why it was leaking. I had my 9th revision after being externalized for two weeks in July of 2016.

On January 1st of 2018, I went to the ER again with horrible headaches. The steroids didn’t work at all. The neurologist said, “yeah there’s no way you can have a migraine for two weeks.” I had intracranial pressure (ICP) monitoring again, and it was determined that I was overdraining, so I had my 10th revision in which my ventriculoperitoneal (VP) fixed-pressure shunt was switched to a Programmable VP Shunt.

In June 2018, I had my 11th revision. During my 10th revision, my neurosurgeon had said he thought I might not need my shunt anymore and said that maybe someday we could see if I even needed my shunt. So on January 15th, 2019, I had my shunt taken out, and an external ventricular drain (EVD)was placed to measure the pressure.

About a week later, I had it clamped off, and I could only handle it clamped off for an hour, at which my pressures got all the way up to 56 when normal is -3 to 20. So this told them that I still needed my shunt. I then had my 12th revision to put a new shunt in, followed by my 13th revision on January 13th, 2020. When my neurosurgeon did the revision he saw that my shunt was actually broken. I had a whole new shunt and gravitational device placed.

In August 2020, in the middle of a pandemic, I went back to the ER and was admitted. I had ICP monitoring done, and it showed I was overdraining again. So I had my 14^th revision.

Despite all of these revisions and hospitalizations, I don’t let it stop me from living my life. In 2019, I went skydiving for the first time, after making sure it was okay with my neurosurgeon, and it was absolutely amazing!! I’m currently 22 years old and going to college to pursue Nursing. I work at my local hospital, where I’ve had many surgeries and hospitalizations, as a Patient Care Technician, taking care of patients like I’ve been cared for. I absolutely love it!!

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