Neurofibromatosis and Pediatric Stroke: Patrick's Story

Patrick suffered a stroke during surgery to remove a tumor on his cerebellum. Here, he shares the story of his recovery at CHOP. 

I don’t know exactly where to start. I guess I should go back to the year 1994, when I was only 1 year old. My biological mother died from a brain tumor that was caused by a genetic disease called neurofibromatosis.

Neurofibromatosis (NF) is basically a genetically inherited disorder that disrupts cell growth in the central and peripheral nervous systems, causing tumors to form on nerve endings and nerve tissues, and causing various other abnormalities.

These tumors, called neurofibromas, can form anywhere in the nervous system.  This includes the brain, spinal cord, and various other large and small nerves. The tumors are usually benign (not cancerous), but in some cases they can become damaging and disastrous. Only 3-5 percent of NF cases become malignant, or cancerous. However, my mother’s case became malignant, which resulted in her death. 

After she died, I had many tests done to see if I had contracted this genetic disease. Luckily, at that time at least, I hadn’t. In 2002, I had an accident. I fell down the stairs and it resulted in a concussion. I was rushed to the emergency room and had CT scans, MRIs and multiple other tests. The results seemed to come out OK, except for one thing: they found a couple of tumors forming in my brain. With a little more testing, I was soon diagnosed with neurofibromatosis. 

Since that time, I went to duPont Hospital in Delaware for my neurology care. I had MRIs every six months, along with other examinations. Along with that, I saw Leslie Sutton, MD, chief of the Division of Neurosurgery at The Children’s Hospital of Philadelphia (CHOP). This was in case, God forbid, I ever needed surgery in the future. 

Tumor growing, surgery scheduled

Around April of 2008, I was going in for my routine MRI.  However, this was the first time the results were not as expected. The tumor on my cerebellum had grown to the point that I needed surgery to remove it.

After many different appointments, my surgery date was set for July 1, 2008, at CHOP.

I was 15 at that point, and had just finished my freshman year of high school. I was very nervous about surgery, especially because it was a brain operation. However, I was told I would only be in the hospital for about a month and that everything should go well. Though, there’s one thing I forgot to mention: I also have hypertension

Into the OR

I remember waking up very early the morning of my operation. I had to be at CHOP’s surgery reception by 6 a.m.

My father and I had to wait a while until I got admitted to the OR, but I was eventually wheeled away. I waved goodbye to Dad and off I went.

Next thing I knew, I was receiving the anesthesia and everything went dark. 

When everything was over, I was sent to ICU for a while. In a couple of days, when I started to come through, I was sent to a regular hospital room.

Another medical challenge

One day my brothers, stepmom and dad all came to see me. They also brought me pizza, and that’s when my stepmom noticed something very strange.

She asked me, “Why are you eating and doing everything with your left hand and leaving your right arm flat on the bed?” I said, “Because it doesn’t work!”

Immediately after I said that, my dad rushed to grab my nurse and I had tests done. The results came back and they showed that I'd had a stroke near the brain stem during my operation.

Since I have hypertension, my blood pressure was 190/110 at some point during the surgery and that is what caused the stroke. My entire right side was affected, and because of that I was placed in the Seashore House at CHOP. This is the place patients are sent for inpatient rehabilitation.

Brain swelling

I only lasted two days in the Seashore House before developing a condition in my brain called hydrocephalus. This condition caused a liquid to build up in the skull which leads to brain swelling. 

Because of that, I was rushed back to the pediatric intensive care unit (PICU) and was given a VP shunt to drain the liquid out of my head. I was laid up in the ICU for about a month and a half, which really set me back on rehabilitating in the aftermath of my stroke. I don’t remember much about that time. I was in pain and couldn’t move very well. After it was all over, I went back to the Seashore House for the long-awaited rehabilitation I needed. 

Rehabilitation

The rehab was hard at first because I was unable to walk or use my right arm at all. Having that infection really set me back. So much that I remember being told that I might never be the same again. I remember being told I might never be able to function right again. However, I still continued rehab.

With each week I got stronger. Before I knew it I was walking again. With more time, I bounced back. I never fully recovered, however, though it was amazing how quickly I did start to get stronger. That is why I’d like to thank CHOP, especially the physical and occupational therapists for giving me the motivation to get better. I still remember them, and probably will never forget them either. 

Long-term recovery

Currently I’m in my second year of college. I’m majoring in English with the hope of becoming a writer. I am also able to drive now. So, I made a recovery from the stroke I suffered in 2008.

I still have weakness on my right side, but it is nothing like it was. Having some weakness is a small price to pay from where I was when I first had the stroke. I’m just happy I was able to go back to my life.

It may not ever be the same, but I know it could’ve been worse. I’m pleased with what I have.   



By Patrick