I originally started to blog as a way to keep my friends and family up-to-date on my recovery from my original brain surgeries in 2013. Initially I refrained from sharing about my brain tumor diagnosis on social media. When I was first diagnosed, I only shared the information with my immediate family and close loved ones. I was diagnosed a month before my wedding and the dialogue quickly shifted from cliché wedding bliss-small talk to questions about my diagnoses and prognosis. In fact, a couple of months later we went to a celebratory barbeque and I left feeling extremely violated. A mutual acquaintance was beyond quizzical. She asked me multiple personal questions about my illness. I was mortified by this encounter and was furious that my very sensitive situation was being shared with others. However, when I was ready to undergo the brain surgeries, I knew that my struggle for privacy would be nearly impossible. I decided that I would share under my conditions. I haven’t always made the right moves but I can assure you that I’m trying my best. A dear Aunt of mine lovingly scolded me about not only sharing the highlights; encouraging me to share the lows as well. She felt it was a disservice to my healing if I was only showing people the highlight reel of my trial. I now, truly understand what she was saying. I didn’t realize that loved ones were curious but perhaps uncomfortable to ask. I now realize that making light of my situation has watered down the severity of my ailments. My illness and ongoing recovery are not for the fainthearted. I will try my best to explain things based not only my understanding but from my experiences.
After about six years of being juggled around from one medical professional to another the source of my issue was finally diagnosed. In July of 2012, I was diagnosed with a pituitary tumor known as a pituitary adenoma and a left cerebellar mass. It was later, during surgery that it was confirmed to be another brain tumor.
At Keck of USC, in November of 2013 I was scheduled for surgery. The original plan was to remove the pituitary tumor and then to biopsy the mass. If the mass was in fact a tumor my Neurosurgeon had my consent prior to surgery to remove it. The pathologist report confirmed that the biopsy of the mass was in fact a cerebellar WHO grade II astrocytoma. While resecting this astrocytoma, the team ran into an unforeseen issue. According to the operative reports, there was a significant amount of blood loss. After clamping off the blood loss source they state on the report that they worked quickly to stabilize the issue and concluded the resection. Leaving a small portion intact because Dr. Zada felt it was no longer in my best interest to continue. After the resection of the cerebellar astrocytoma, they went on to the second procedure.
The second surgical procedure was to remove the pituitary tumor. Dr. Zada and his team were successful in resecting the pituitary adenoma. The issue was that my pituitary gland was inactive which led to the suffering of my endocrine system. Not only was I under the care of an endocrinologist but a reproductive endocrinologist as well. After developing an auto-immune disease and other ailments I decided to consent to the resection. This surgery was successful and so far no issues have surfaced from this resection. After a few months my body started to regain full function of the pituitary gland.
Initially my recovery was off to a good start. Shortly after my discharge I quickly regressed. After being rushed back to Keck of USC in Los Angeles, I was immediately ushered into surgery where they attempted to correct the CSF fluid build up. December 19th of 2013, I underwent to emergency brain surgeries to stabilize the new issue that surfaced. I was diagnoses with pseudomeningocele and underwent a procedure known as suboccipital I and D with repair of pseudomeningocele.
After a short stay in Neuro-Trauma wing it became apparent to the team that I would need a VP Shunt to assist my brain in draining CSF fluid that was accumulating. The complication during the resection of the tumor in the left cerebellum (astrocytoma) led to a diagnosis of Hydrocephalus. December 22nd 2013, it was decided that I would require an insertion of right frontal ventriculoperitoneal shunt. The idea of the VP shunt was to aid my brain in reliving itself of the built up fluids. Once the VP shunt was implanted, I went back to recovering from the brain tumor resection surgeries.
After several months of vestibular rehabilitation, I returned to most of my normal activities. During 2015, I started to develop unexplained symptoms and unbearable pain from pressure tension. My brain was struggling to maintain the inserted VP shunt. January 2016, I underwent my first VP shunt revision surgery. Several months later I was seen in clinic where he attempted to perform a ventriculoperitoneal shunt tap. He was unsuccessful in drawing a significant amount of fluid. I was then admitted for monitoring and scheduled for surgery the next morning. May 2016, another VP shunt revision was performed to once again switch out the malfunctioned VP shunt valve.
In regards to the hydrocephalus issue, anatomically all appeared to be stable while reviewing the post-op MRI images. During my post operative appointment, I discussed a list I had compiled of unresolved symptoms. Initially my concerns were made light of because it was still early in my recovery from the VP shunt revision. After time had passed, I again addressed my unresolved symptoms with my Neurosurgeon. Dr. Zada immediately sent me for a new MRI series. These MRI reports were conclusive with my unexplained symptoms.
July 2016 I was diagnosed with Syringomyelia and what anatomically appeared to be Chiari Malformation. Once I was diagnosed and given my odds, I retreated from sharing details because I was so overwhelmed. Dr. Zada suggested that I consent to having the CSF fluid manually drained from my fourth ventricle as many times as possible to postpone the inevitable. It was his approximation, that in the next two years the condition would immobilize my extremities, as well as impair my bowel and bladder function. I did not want to discuss the new diagnosis with anyone so I only shared it with those that needed to know at the time. I had gotten pretty good at making light of my situation but these diagnoses were much heavier; too heavy to carry publicly at the time.
I will start with explaining the diagnosis of Chiari Malformation. I was misdiagnosed but understandably so. One of our countries Chiari and Syrinx specialists accepted my request for a second opinion and reviewed my case. Dr. Batzdorf called and spoke to me in length about my current condition and made recommendations in accordance with his opinion of my diagnosis. He disagreed with the diagnosis of Chiari Malformation. He explained to me that my issue was not a “real chiari”, even though my images met the requirements. Anatomically, the MRI technicians was right in suspecting a chiari malformation finding. When you review the images it’s clear that my brain is pushed out of the skull and applying pressure to my spine. However, a true diagnosis of a chiari malformation is when an infant develops this deformity of the brain and spine. My brain was in fact pushing out of my skull and applying pressure to my spine. However, I was not born with this malformation. There was a collection of CSF fluid trapped in my fourth ventricle; this collection was pushing my brain outward and visibly causing it to push out from the skull and onto the spine. This not only meant that I needed to surgically correct the issue of the trapped fluid collection in the fourth ventricle but the syrinx issue.
I did in fact develop a syrinx in my spinal cord. Initially, you lose sensation, feeling, and then mobility. As the syrinx gets larger and travels further down the spine these symptoms also worsen. I was in the beginning stages of these symptoms. I was struggling with my reflexes, tingling sensations and intense twitching became common. Had these been my only symptoms I might have stayed in a state of denial. In spite of these issues, I was experiencing pain that would immediately cripple me. There were many moments were I would be unable to find a position or remedy to ease the tension and pressure I was experiencing. I would often wake up from intense twitching and was often unable to regain full sensation of my extremities. I’d attempt to aid my arms or legs body in recovering from one of these episodes but with time I was unable to stabilize these episodes.
Dr. Batzdorf made arrangements for me to be seen by his junior colleague, Dr. Fallah. He explained that the complexity of my case required immediate intervention. He felt that Dr. Fallah’s expertise with these multiple ailments was the best surgeon for my case. I’m eternally grateful to Dr. Batzdorf who made arrangements on my behalf to see his junior colleague. Dr. Fallah is a pediatric neurosurgeon. As I previously explained, patients are born with these issues and its extremely uncommon to develop these issues as an adult. My issues are a result of both brain tumors and the resection of them. Dr. Batzdorf ended our call by assuring me that he would be overseeing my case but trusted Dr. Fallah to perform the surgical procedures. So far this has been true; often times he weighs is on surgical plans and techniques to aid my ongoing symptoms.
In October of 2016, Dr. Fallah performed a shunt revision to ensure that the shunt was working adequately. The idea was to attempt the most non-invasive option first. The surgery initially showed some promise but, after several months I started to regress again. My symptoms were intensifying and it was became very evident that the inevitable was happening. I was warned that once experiencing worsening symptoms of the syrinx that these issues would most likely be irreversible.
In June of 2017 my Neurosurgeon recommended a posterior fossa exploration to fenestrate the 4th ventricle and also to perform an expansile duraplasty. Again, I will explain to the best of my understanding. He was suggesting that he reopen the original surgical incision area and attempt to re-open the pathway to allow the trapped fluid a passageway. This would decrease the issue of the 4th ventricle and the fluid leakage (syrinx) would then reduce, then reducing the syrinx traveling down my spine. Upon deciding on a date he agreed to postpone surgery until after my sisters wedding date. The Monday following her wedding, I underwent the first of five additional surgery procedures to stop the Syrinx from paralyzing me.
The first surgery took place August 7th, 2017 and was initially successful. They were able to reopen the pathway and even created extra space for fluid to move fluidly. Shortly after being discharged I developed a CSF leak. On August 16th, upon readmission they attempted to stop the leak non-invasively. First by re-stitching the incision area. This proved to be unsuccessful and I was soiled in brain fluid again. They then when on to attempting a bedside-spinal tab procedure which was also unsuccessful.
Another surgical procedure was performed and the leak was successfully repaired. ???? Right when I thought I was in the clear my brain’s health again declined. My ventricles were struggling to communicate with each other properly.
I underwent two additional surgeries before they were able to control the Syrinx. During this time, I again lost feeling in my extremities.
In effort to allow my brain a chance to heal and avoid another CSF leak a drain was inserted; my stay in the ICU for these nine days consisted of them manually draining the CSF fluid, hourly, around the clock. Again, my brain seemed to comply and I was discharged.
Unfortunately, there were again unexplained symptoms that I was experiencing and after more testing it was back to the drawing board for my Neurosurgeon and his team. I was immediately admitted and put on the waiting list for an operating room. Again, I was operated on in effort to stop the Syrinx from worsening. As the story goes, everything appeared stable and again I was eager to leave Ronald Regan Hospital. It quickly became obvious that my fourth ventricle (where my issue was steaming from) was no longer in sync with the others.
After a very lengthy discussion with my Neurosurgeon and his Resident Neurosurgeon we reached an understanding that the benefits still outweighed the risk. I then agreed on the procedure he proposed and I requested that he not admit me for the procedure he’d attempt the following morning. I asked that I be able to return to the hospital in the morning for the operation so that I had an opportunity to get my affairs in order. On the drive back to my parent’s house I received a phone call from him. I’ll spare you the details and just tell you that the phone call was to ask my consent to try something somewhat experimental, and definitely more of a gamble. I heard the confidence in his plan and after discussing it all in great detail I agreed to give my consent. The following morning we again discussed the game plan and I gave my written consent.
Because of the new issue that we were battling the final surgery last summer consisted of three teams: my neurosurgery team, a general surgery team and a team of cardiologist.
My latest battle has been with the cranial nerve damage as a result from the last brain surgery. More specifically sixth & seventh cranial nerve dysfunction/damage. The sixth cranial nerve issue has led me to be diagnosed with Esotropia. I refer to this as double-vision. The seventh cranial nerve issue is known as Facial Nerve Palsy. Both conditions are a bit complex so to simplify things I will explain it based on what I experience. For years I lived with multiple "invisible illnesses" but these new issues are obvious. I wear an eye patch to assist me in being independent with normal day to day activities. When I cover one eye I am able to see the way I normally would have. However, without the patch I see two of everything which makes things a littttttle complicated. It's hard to explain so I will add a video that will give you a visual.
Unfortunately, life doesn't come with a guidebook for living with chronic illness, so you'll just have to trust that I'm doing my best. I've been navigating through my twenties, one beautiful disaster at a time. My journey to recovery is not for the faint-hearted. While I actively practice staying in the light, there are definitely dark moments. There are often times where the light at the end of the tunnel seems so dim that I'm afraid I will lose sight of it. Without faith and prayer, I'm not sure I would sustain these ailments.