Much like most ailments, aneurysms can include co-morbid symptoms. Therefore, when signs appear you must be vigilant and note things that seem different than usual. In 2018 I was a 28-year-old full time working mother to a seventeen-month-old beautiful soul and in love with my best friend. We were starting a life together with our first child in our newly purchased house in late 2016. I was incredibly excited for my future and when things started to slowly change, I knew that something was incredibly wrong.
First, my vision became blurry. Not noticeably initially, just when switching my eyes back and forth from a computer monitor to paper documents on my desk. I tried looking away often and focusing on things 20 ft away for 20 seconds, but it just seemed like there was a delay with my eyes finding focus. I attributed this to possibly being dehydrated. I was weeks into a new role within the company I had been employed by for a little over three years at the time. I was amid training when this began, and I was not on top of my water intake like I typically had been. I just assumed I needed to take breaks more often and drink more water. Also, I had just seen my eye doctor for a new prescription. I thought, maybe I am still adjusting to these lenses. For years I wore a certain brand, this time a new brand was ordered. I was in the process of trialing them before actually ordering boxes for the future, so it was looking like this fit was not a match for me.
About two weeks into this noticeable visual change, I would wake up with vertigo and coordination impairment, especially as I sat up and stood from the bed. When this happened, I thought allergies? Clogged ears? I have always had a terrible experience with my allergies so again, I thought of a logical explanation. I just knew that I was having eustachian tube issues and that was confirmed suddenly when I could barely hear out of my right ear. Not being able to hear, feeling dizzy. Obviously at this point my new job was going great… This is when I started to question things. Could there be something going on with me? Sudden onset anxiety? I went from not being able to hear, to not being able to audibly process words as my peers and family members were speaking to me. I would say I spent about a day still telling myself this was all inner ear related until I thought, either way I need a referral to see an ear, nose, throat, specialist. Maybe even see an immunologist for severe allergies. I knew this would start by seeing my primary care physician. She is phenomenal! But she was also brand new to me. My lifelong nurse practitioner retired just the year before, so I was developing a new relationship with my new Doctor. She was also very reputable amongst the community so I found out quickly you must make appointments ahead of time. So, instead of seeing her just yet, I visited with an APN supervised under her care. I had a pleasant visit although with being a new mom, starting a new job, and the stress of life we discussed the possibility of postpartum anxiety? Depression?
I wanted to be proactive and take care of myself. I sought out behavioral therapy – counseling. I was prescribed a non-addictive anti-anxiety medication in case I were to have panic attacks. I was trying to work on things. In my early 20’s I experienced a short episode of reactive depression. I spent a lot of my adolescence enduring the normal ups and downs in addition to wrapping my head around the fact that my dad had cancer. I was aware of my routines and the changes and at this point it was happening but more so because I was scared that I did not know what was going on with me. At that point, the scariest symptom presented itself. Memory loss
Now I could no longer hear well, often not process things being said to me, and now…throw in being incredibly confused. I started taking an SSRI antidepressant for my anxiety recommended by my PCP’s APN. Looking back, I wish I would have asked for a referral to be examined by a Physicist before giving any medication a try. As I’ve mention, I was not thinking clearly at the time. I called in and spoke with a triage nurse about three weeks into the medication and described the confusion and memory issues that began, and she put a note in my chart and a new SSRI was ordered. This cycle went on for weeks. I’d be advised to wait out the few first weeks for the medication to balance itself out and honestly it was an tormenting 6-8 weeks of awful side effects in addition to the rapidly growing list of other signs/symptoms that I was not overlooking.
With antidepressants, follow up visits are always scheduled. So instead of the possible stomach flu, I was finally getting to make an impression on my doctor and boy at that time I was a hyper-vigilant mess. You would not have known it. She looked me straight in the eyes and listened to every relevant or irrelevant thing I mentioned. Over the course of the last few months with my ongoing appointments to follow up on medicine changes or calls with questions, I was starting to feel like anxiety had destroyed me and my brain and I wasn’t going to be able to push through it. But, in this moment, I was not thinking any of that. She respected me. We spoke for over an hour and multiple referrals were ordered immediately. She practiced a few neurological exams on me, and everything checked out fine. I left feeling relieved but at the same time so scared because I didn’t want something to be wrong, but really thought that something was.
I felt a sense of ease over the next couple days, at least the most at ease I had in a long time. I celebrated Halloween with my family and then went in for
an outpatient MRI scheduled just eight days after my doctor’s appointment. I remember it being so surreal at the time. My longtime boyfriend and my daughter accompanied me and I just rallied back and forth in my mind between nothing is wrong, you are just suffering from a horrible mental illness and we will figure it out, to what if this is something and what if I can’t come back from it?
I didn’t have to wait long to find out. My MRI took place on a Saturday morning. The following Tuesday afternoon I was suffering from a terrible vestibular migraine. It was so painful that my friend/co-worker drove me to the pharmacy on my lunch break. While strolling through the aisles looking for the godsend that Naproxen was at that time, I noticed I had an incoming phone call. I recognized the number in association with my Doctor’s office. I assumed it was a triage nurse from a call center, calling to inform me that everything came back fine and to follow up with other referrals for ENT, etc. Little did I know, a conversation…well I’m sure multiple conversations took place but, then the neurological institute of my hospital observed my scans, spoke with my PCP’s office and my doctor’s office attempted to call me while I was working. I do not receive great service in my office so the voicemail did not come through until later that day. It was a voicemail asking that I return their call to discuss my results from my MRI. Instead, I answered a call from the neurological institute, and it was the RN of a neurosurgeon. She introduced herself and told me a date and a time to come in to see the doctor. I paused because up until this point typically when scheduling departments call you, they go over your availability and schedule something that you can accommodate. So, I froze. Then I just said, “wait…what”? Then as I stood there, anti-inflammatory NSAID in hand and she said, ” I’m calling to schedule your consultation with the doctor, for the aneurysm”. This is where in the movies; the character stands stationary but everything around them rotates in a circular motion like a vortex that manages to pull everything in but them. In this moment I was that character. It suddenly became my reality when I broke into tears and cried out, “I have an aneurysm?”…
I underwent a right craniotomy November of 2018. While performing an aneurysm clipping, my neurosurgeon discovered a second aneurysm on the left ophthalmic artery. I was lucky enough that the second one discovered, was successfully clipped all in one surgery. Unfortunately, the original 5.4 mm wide neck ophthalmic artery aneurysm was not as simple. My surgery took hours longer than anticipated and my family was distraught while all they could do was watch my name on a screen in the waiting area. Hours after the original estimated completion time, my family was paged to meet with the surgeon. This is when they were informed of the other aneurysm, and that my optic nerve caused a lot of problems as he attempted to clip the bulge, he had to “torque” on the nerve in order to successfully alleviate the possible rupture .
At this point I was admitted to the recovery unit of the ICU. Outside of a panic attack when waking up and my boyfriend telling me about the second aneurysm, I do not remember much of my ICU experience. Fast Forward to my post ICU neurological room. As I started to come to, I was realizing that I required constant care. Hourly neurological exams, ongoing labs, an angiogram, and clinicians at my side all day to serve me with great care. As the days went on the swelling around my eye went down. At this time everyone seemed intrigued and concerned when my visual field exam was performed.
This is when I obtained the knowledge that everyone else knew. My optic nerve was damaged to a point where I was facing potential vision loss. I remained hopeful. Day after day little to no change… but there was a lot of healing that needed to happen. Months pass and I am back to work part time but not driving. I was to see an ophthalmologist to have a CT scan on my optic nerve. After about thirty minutes of scans and a short wait, I was informed that the partial vision loss from surgery, is indeed permanent damage and I would not regain my sight.
Months of research, journaling, continuing my CBT with a counselor, requesting outpatient referrals for PT,OT, & SLP later…. I can officially say I am proud brain aneurysm survivor. I have worked hard! I discharged home from the hospital with a completely different lifestyle to adapt to. I was now a mom to a 19-month-old, learning how to function with visual impairment, managing debilitating nerve pain, and healing with all that brain surgery entails. I worked so hard that I have come so far. I can’t tell you when the shift began because it was a multitude of times trying to be my best but remaining patient with the process.
I began to really increase the amount of meditation and vinyasa yoga in my life. This is when mantras and positive affirmations were introduced to me and my daily routine. After much thought my main two mantras often were grow positive thoughts & live intentionally. Those phrases got me through more than I can explain. That is where this all started.
Considering what I have been through and the fact that I have lived to share my story, has allowed me to think further into the importance of post hospital/rehab admission care such as home health or ongoing outpatient rehab. Raising awareness about this is extremely important for me as I advocated for myself, but I feel that there should ALWAYS be aftercare post brain surgery. This should include whatever therapies beneficial and a Medical Social Worker appointed to help with resources within the community if the patient requires that level of care.
My goal is also to promote awareness and the importance of early detection. By contributing to brain aneurysm foundations that focus on raising awareness and obtaining funds to increase research, we can decrease the lives impacted by brain aneurysms. If more of us are aware of the signs and symptoms we can utilize our insight and save the lives of a friend or loved one just as we can when identifying the signs of a stroke.
Lastly, I want to touch on healing. I believe in the connection of mind body and soul. When you can align all aspects of your physical life with your mental thoughts and find a balance you have found clarity. Your intentional thoughts start in your mind. Those thoughts and beliefs grow internally as you surrender to the natural intelligence of your body. Over time, as we live intentionally, our bodies can evolve to heal themselves. I hope you follow along as I continue to learn and talk about this topic more!
Thank you for supporting my mission in any way that you can.
I hope we can continue to grow positive thoughts, promote awareness, and to live intentionally while supporting one another!
– Emily
