Jessica Agricola, 31 years old, California (photo at bottom)
I was born 2 months prematurely on Nov. 21, 1984. My mother swears her labor was brought on by some bad Chinese food she had sometime before the 3 day ordeal of my delivery. The MD had hoped to stop my delivery, but being the persistent person I am, after 72 hours, I had arrived weighing a whooping 3 pounds, 5 ounces. I was premature so they took me away promptly to the NICU (Neonatal Intensive Care Unit). One week into my stay in the NICU, the nurses began to notice that I was noticeably lethargic and I was taken for a MRI and, you guessed it, I was diagnosed with Hydrocephalus. I was shunted at 1 week and unbeknownst to my parents my Neurosurgeon did not believe I would survive after that initial surgery due to all the CSF that had accumulated and was drowning my brain; HOWEVER, I recovered with no issues and was just a normal, very tiny baby. At 1 month old, I was reshunted due to shunt failure and released home with no issues. My mother tells me that I had a shunt malfunction at 3 months old but it resolved itself (which can I just say how amazing the human brain is)! So, then it was a malfunction at 3 years old which resulted in, you guessed it another surgery, and then a recovery. I consider myself very lucky because I didn’t have any Hydro-related issues/needs until I was 10 years old! I will spare you the details of my losing consciousness in my 5th grade class and the terrifying 1.5 hour in the car with my parents as they rushed me to UCSF because it was faster than waiting for an ambulance. Just know that for all you parents with wonderful children like us, I have seen your fear in my own parents’ eyes and I wish that no one would ever experience that feeling EVER in a MILLION LIFETIMES. So where was I? Right, I’m 10. At 10 I underwent an ETV (Endoscopic Third Ventriculostomy) and it lasted 8 years! Another huge success since it was rare for them to last, at that time, over 5 years so after 8 everyone thought that my Hydrocephalus “cured itself.” Two weeks after my 18th birthday, I had a shunt placement since I was showing symptoms of Hydrocephalus and although I was crushed that I was, in fact, not cured, I figured it was another surgery and then I’d be home. Sadly, it was not that simple. The thing is I had OLD hardware in my brain for so long that it calcified and when my Neurosurgeon took it out everything went smoothly; however, when he placed the new, shiny shunt it caused a brain bleed. The scariest thing in my life was being woken up with your Neurosurgeon saying my name and telling me, repeatedly, to “push on my hands with your feet.” As I thought I was complying with his simple instructions it became clear that something was wrong. I was so frustrated that I swore at him and told him that I was doing what he wanted (What the HELL was wrong with HIM?!). It wasn’t until after the MRI that I truly felt despair of being paralyzed on the entire left side of my body. So, as you can imagine, this hospitalization was quite different and all I wanted was to go home. The only thing, or person I should say, was a PA who worked with my Neurosurgeon who kept talking about an inpatient rehabilitation center that could help me “get back to ‘normal.'” All I can remember is seeing RED and thinking “who the hell are you? I’m getting out of here if it takes every last bit of energy that I have. Sometimes, you just meet people who have NO CLUE and really doesn’t seem interested in understanding. Well, this was her. I was bitter then, but now I see her as someone who made me stronger during this time. She said that in order for me to go home, I had to walk up and down a flight of stairs 3 times and all without the use of my entire left side. Again, because I am very persistent and stubborn I DID IT. To my delight and her shock (I think my family was shocked too) I got to go home!!! At home, it was exhausting with the Occupational Therapy and Physical Therapy- relearning how to dress myself, eat with silverware, and be able to walk without smashing in to walls. I was paralyzed from Dec.13, 2002-Feburary 14, 2003 and although I still have residual neurological side effects like my left foot swinging out and a left foot drop when I am physically tired, I fully recovered. As soon as was able to go back to school and resume my normal life, I did. After this major medical event, I had 4 uneventful years where I attended community college, went out with friends, and spent time with my family. It seemed like the worst was over and I was going to be okay since I had a wonderful support system of friends and family and nothing could stop me. But like many of us come to realize, we cannot get too comfortable about our situation because you never know when Hydrocephalus would throw you a curveball. I don’t know when exactly I started feeling crummy, but I eventually was referred to Stanford Pain Management and despite the lovely specialists and how hard they tried, I suffered for 4 years debilitating headaches. I was sleeping 16-18 hours a day and with pain I would not wish for anyone to experience. This went on for 4 years, but then I found a miracle. I had a friend tell me about a neurosurgeon who was trying new treatments for chronic headaches with people with Hydrocephalus and we decided as a family that we had to try anything we could to improve my situation. We learned after extensive tests that my ETV was still working and a shunt that I had been overdraining. My shunt was capped off in the same trip and I returned to CA with no shunt and NO headache! What does one do when they don’t have a headache? I had forgotten! I decided to finish up community college (it took me 7 years to complete it with 3 AAs), I transferred and completed my BA from University of California at Davis and then completed my Master’s in Social Work from University of Southern California. I was able to get my dream job as a hospice social worker in my community. During this time, I broke my cardinal rule: I got comfortable and let my guard down. I ended up thinking that Hydrocephalus was not going to ruin all that I was accomplishing. But little did I realize that the dizziness I had been experiencing, periodically, and suddenly experiencing sensorineural hearing loss that practically has be me deaf in my right ear and compromised in my left ear, was really Hydro-related. The ENT at Stanford kept asking if I had been to my Neurosurgeon because “it sounds Hydrocephalus-related” but I kept saying that that could not be possible. Long story short (after 1325 words I’m trying not to bore you), for 4 years I was suffering from increased ICP and I needed a shunt. On Aug. 28,2015. I had a shunt placed but continued to have problems and after having a CT that showed that my one ventricle became entrapped and ballooned severely enough to shift my midline, I had a revision on Oct. 19, 2016. STILL my symptoms continued and I had a lumbar puncture (because scans are no longer showing changes in my ventricles), my neurosurgeon decided I needed a 2nd shunt and I had my last surgery on February 26th. I’m afraid more surgeries are looming and that’s my reality at the moment, but I’ll take it in stride because I don’t know any different 🙂
So, I hope you enjoyed my story. I tried to make 31 years an easy read. Please feel free to share your story/something you want share that is Hydro-related with us by emailing me at Jessica.firstname.lastname@example.org and I will add it to our Hydro-Talk Blog!