Carly, 22

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 3-6. In April of 2015 I had revision #3 because I was having 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 4th 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 5th revision. I ended up having my 6th shunt malfunction a week later which ended with me having my 6th revision. On October 13th I had my 7th shunt revision.

A week later I had my 8th 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 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, 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 ICP Monitoring again and it was determined that I was over draining so I had my 10th revision in which my VP Fixed 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 EVD placed to measure the pressure.

Carly doesn’t let her hydrocephalus stop her from trying out new experiences like sky diving!

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 over draining again. So I had my 14th 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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