My Story

SUMMER & FALL 2002 - Diagnosis

During the summer between my freshman and sophomore years at Brigham Young University, I started experiencing debilitating dizziness. It felt like a mold of jello was jiggling in my brain! After several weeks, the sensation miraculously went away just in time to travel back to school in Provo, Utah.

A few weeks into the semester, in the middle of a dance class, that same jello-jiggling dizziness came back. A friend of mine drove me to the student health center that afternoon. One of the doctors there referred me to an ENT and that doctor ordered an MRI. He suspected a tumor and when the results came back a few days later showing abnormally large amounts of cerebrospinal fluid (CSF) in the third and lateral ventricles of my brain, this same ENT was relieved to tell me that I had what is called hydrocephalus and I would just need to take a pill every day for the rest of my life that would slow down the production of CSF. I was mortified that I'd have to take a pill every day! Oh, silly me. The ENT referred me to a neurosurgeon at the local hospital for a consult a few days later.

Dr. Lynn Gaufin (the neurosurgeon) explained that hydrocephalus is usually a symptom of another problem that limits the flow and/or absorption of CSF. In my case, he told me that I had aqueductal stenosis, which is a blockage in the aqueduct of Sylvius (the small passageway connecting my third and fourth ventricles) that prevents the CSF to flow correctly through the brain and instead causes the CSF to build up in the third and lateral ventricles. He told me that I would need brain surgery immediately!

I remember leaving the hospital, going to the university’s administration building to defer classes for the semester and receiving a tuition refund (it just happened to be the last day you could add or drop classes without a financial penalty), going back to my apartment and finally allowing the tears to flow. I remember my darling friends holding me in the sweetest hug for what seemed like an hour until I'd calmed down. Friends, classmates, professors, and neighbors showed me so much love and support! My sister and her husband kept me distracted and entertained for a few days until everything was lined up for me to fly back to California to meet with a neurosurgeon at Kaiser in Redwood City to discuss treatment options.

FIRST VP SHUNT - 17 Oct 2002

We were told by the neurosurgeon at Kaiser in Redwood City, Dr Cecil Jun, that I would need a shunt, or a pressure valve system that would drain the excess fluid out of my third ventricle down to my abdomen. He showed us an informational video and assured us that my shunt would fix the problem and I'd be good to go!

I received my first shunt on Thursday, October 17, 2002. I don't remember ever feeling as horrible as I did when I woke up from that surgery. I felt nauseated, had a constant headache, and was just miserable for a few months with the worst headaches, nausea, and vomiting you could imagine, often returning to the neurosurgeon or the ER in debilitating pain. CT scans, shuntograms, spinal taps, and other tests all came back negative for any problems. And because I was still walking, talking, and even trying to study for tests for my BYU independent study classes, the doctors believed that I was just fine and my symptoms were normal for someone who had just had brain surgery.

They were WAY wrong.

SECOND VP SHUNT - 19 Dec 2002

I remember my dad having to come pick me up from work one morning. I could barely sit upright. The dizziness was out of control awful. My vision was really blurry. And I thought I was going to barf any second. I felt guilty for not being able to "suck it up" and push through the discomfort. My neurosurgeon told me just days before that these symptoms were normal for people who have hydrocephalus and that I should just get used to it. As we arrived home and pulled into our driveway, I jumped out of the car, ran into the house and straight to the bathroom to barf, and... that's all I remember.

It turns out that the brain can only handle so much pressure before it shuts the body down and that's what mine did. This coma-like state is weirdo. I have teeny tiny bits that I kinda remember like opening my eyes briefly during the ambulance ride from the Kaiser in Walnut Creek to the Kaiser in Redwood City. I remember my brother coming into my room before surgery. He was very distraught. But those were just really short moments of awareness when I was really out of it for the rest of the day. A new neurosurgeon replaced my first shunt with a new, programmable shunt on Thursday, December 19, 2002. I woke up after surgery feeling FABulous and just a bit groggy, but I knew right away that the shunt was working because all of that pressure and pain was totally gone. Apparently the proximal end of the catheter (the tube inside my brain) had clogged and my ventricles filled up again with too much fluid. Just hours after surgery, I walked out of the hospital feeling amazingly well for the first time in months and excited to enjoy the Christmas season with my family.

I returned to BYU a few weeks later for winter semester and was doing and feeling well.

That is, until I wasn't doing so well.

THIRD VP SHUNT - 10 Feb 2003

The headaches came back with a vengeance. My vision blurred. This second shunt was programmable, so the neurosurgeons in Provo, Utah tried to help my headaches improve by adjusting the pressure at which the shunt would open and drain excess CSF. They believed that my shunt was draining too much CSF which was causing low-pressure headaches. I was also told to drink a lot of caffeinated drinks. Apparently caffeine sometimes helps these kinds of headaches. But after a few weeks of treatment, I went into a coma again. The doctors determined that the second shunt had failed because the proximal end of the catheter had clogged, just like the first shunt failure. They replaced it with a new programmable VP shunt on Monday, February 10, 2003, and I felt great again and continued with my studies for the semester.

ENDOSCOPIC THIRD VENTRICULOSTOMY - 11 Oct 2003

This third shunt lasted until October 2003. By this time, we were well aware of the symptoms leading up to shunt failure: terrible headaches, nausea, blurred vision, and once I started vomiting from the pain, we knew that my brain would shut down my body soon after. But this time, the failure was so extreme that the pressure on my optic nerves created a "sunset" effect on my eyes causing my pupils to fall below my lower eyelid. It was really bad. Thankfully I don't remember any of this and my then-boyfriend, now husband, Glen Varga, and my roommates took care of me until my mother could get to Utah.

The adult neurosurgeons in Provo insisted that I be treated by the pediatric neurosurgeons at Primary Children's Medical Center in Salt Lake City. We had no idea that some of the best (if not THE best) neurosurgeons in the world for the treatment of hydrocephalus were so close!

My neurosurgeon, Dr. Douglas Brockmeyer, determined that the third shunt had failed for the same reason as the other shunt failures: the catheter inside my brain had clogged. He informed my mom that I was actually a perfect candidate for a procedure called an endoscopic third ventriculostomy (ETV) where he would remove the failed shunt and essentially poke a hole in the middle of my brain (at the base of the third ventricle) thus allowing the spinal fluid to drain without the need for a shunt. Mom consented to the surgery (because I was still totally out of it in my semi-coma world).

The surgery was a success! There were a few problems after it, though. The shunt removal caused blood to mix with my CSF giving me chemical meningitis which resolved with steroids and draining the infected CSF until the fluid ran clear again. The hole they made was also next to the hypothalamus and pituitary glands causing quite a few hormonal issues including a four-month stretch of menopause! But that particular issue resolved with hormone treatment in the form of birth control. In June 2004, an MRI showed that the ETV fenestration was possibly closing or scabbing over, but we all agreed not to do anything unless my symptoms returned which actually took another twelve years to happen.

FOURTH VP SHUNT - 16 Jun 2016

My kids and I went to stay with my parents in the San Francsico Bay Area while they were off-track from their year-round school in April. It was probably the longest I’d stayed in California since Glen and I were married in 2004. I don’t know if staying at sea level for two weeks caused the return of the symptoms, but by the time we got back to Utah, I had, what I believed to be, the worst tension headache ever. But my traditional remedies weren’t working… massage therapy, chiropractic therapy, rest and relaxation, an anti-inflammatory diet, anti-inflammatory medications, essential oils, etc. And then my vision got blurry and doubled. When I started barfing from the pain, I knew that the ETV had failed and my hydrocephalus was back.

CT July 2016
Compared to the previous scans, there's SO much
less CSF in even the wrinkles of my brain! 

Everyone, and I mean EVERYone, believed my ETV had simply scabbed or scarred over as predicted in 2004 and just needed to be reopened. So imagine my devastating surprise when I woke up from surgery on Thursday, June 16, 2016 with a SHUNT in my head again! I couldn’t believe it! I felt terrible. The shunt was overdraining from the start. We finally turned it “off” to allow the ventricles to fill up with CSF again, and I was actually pain-free between July 1st and July 5th, but then I started getting high pressure headaches (like the tension headache I struggled with in April) more and more often, so we had to turn the shunt back “on” again. But then the shunt went bipolar and was unable to decide whether it should over or under drain my CSF. We suspected that the antisiphon device on this shunt wasn't working correctly.

FIFTH VP SHUNT - 31 Aug 2016

I finally threw my hands up in defeat and asked my neurosurgeon to either retry the ETV or replace my shunt with something else. On Wednesday, August 31, 2016, my shunt and the proximal end of the catheter were removed and replaced with another shunt that seemed to be doing the trick right from the start! I woke up from surgery experiencing incision pain, but my high and low pressure headaches were GONE for the first time since April (other than that few day reprieve in July). That same afternoon in the hospital, I was scared to death to sit or stand up with the new shunt in case it would start overdraining, but it never did and hasn’t yet!! My incisions are still really tender, but I haven’t had a too much or too little CSF headache since I came to on the recovery floor. THIS is how hydrocephalus patients feel once their CSF is under control. I’m feeling less bitter about having a shunt again because I’m finally able to go about my days mostly pain free.

UPDATE: 12 Sep 2016

I promise I'm not trying to whine. I'm simply trying to be accurate in my story for any other hydrocephalus patients and their families. So please read this in your mind in a very factual, non-whiny voice... I've had a headache since Saturday afternoon that just won't go away. But it doesn't feel like a high or low pressure headache. I'm not sure exactly what kind it is and it's more annoying than debilitating and traditional medicines aren't working. I'll start exploring TMJ remedies including wearing my night guard when I sleep to prevent any clenching. I'm also going to ask my neurosurgeon for a prescription for a therapeutic massage. My neighbor and friend is a sports medicine masseuse and has helped me work out scar tissue in my head and neck from previous brain surgeries and she's been a HUGE help in relieving tension in my jaw muscles. I'm almost positive that this headache can be relieved with her help.


I'm also still struggling with dizziness, but for the first time since May, my eye glasses are actually helping! I tried on my contacts yesterday and the left eye was perfect, but the right eye made vision in that eye more blurry. I'm sure that will calm down with time. I've had a wonderful eye doctor monitoring my optic nerves all summer long. He's been instrumental in my care this year! And since my past bouts of dizziness were related to changes in my vision, I think once any residual swelling in my brain calms down, the dizziness will be resolved as well.

We're on this path of healing! It will take time, but at least we're heading in the right direction with this new shunt and and we have a team of medical and health professionals who are dedicated to helping me get back to some semblance of a normal life.

UPDATE: 4 NOV 2016

SEVENTH BRAIN SURGERY: EXTERNAL VENTRICULAR DRAIN

I went to my August 31 post-op appointment on October 6 and it turned into a pre-op appointment because my shunt wasn't at a great setting and wasn't draining enough CSF. October 12th, my neurosurgeon tested my shunt to make sure it wasn't clogged or broken and then gave me an external ventricular drain (EVD) that would measure my intracranial pressure (ICP) so that we could collect ICP data and then choose a shunt that would work well for me. So, with the help of the Neuro ICU nurses, we carefully wrote down my ICP levels and CSF drainage in different positions and for differing amounts of time.

The seven days I had the EVD were crazy emotional. I didn't allow myself to cry very much this summer because it made the headaches worse, but I could cry all I wanted with the EVD because I could raise my head above the EVD drain to help my CSF drain more quickly and relieve the pressure. A lot of the tears were from feeling sorry for myself and hating how this was affecting my family. I missed my son's sixth birthday because of this EVD experiment. Thankfully I had some amazing nurses and staff who kept me comfortable and semi-happy even. One of my favorites was Frank, my nutritionist. Not only did he bring me all the cheesecake I could eat, but he would stay and chat about anything and everything.

EIGHTH BRAIN SURGERY: SHUNT #6
After seven loooong days with the EVD, I was finally going in for surgery! Dr Doug Brockmeyer, the pediatric neurosurgeon who performed my endoscopic third ventriculostomy in 2003 that kept me shunt-free for all that time, joined my adult neurosurgeon, Dr Joel MacDonald, to explore why my ETV wasn't draining enough CSF. They discovered that the fenestration/hole was wide open but that I had a lot of scar tissue behind the hole in the sub arachnoid space. Unfortunately, it's too dangerous to remove it and even if they did remove it without killing me, it wouldn't take long for the scar tissue to grow back.

So they gave me a Codman Hakim shunt set at its lowest setting because my pressures with the EVD were super low. They also installed an anti-siphon device in an attempt to prevent overdrainage. Unfortunately, the shunt at its lowest setting was overdraining my CSF from the start. They raised the pressure threshold and that helped, but not enough. Two weeks after placement and overdraining, they adjusted it again and it seems to be helping. We're hoping this will be it and this shunt will last two or three decades.