May is Brain Tumor Awareness Month! As the month is wrapping up, I wanted to take this opportunity to share my story. I am creating a blog to document my journey. My goal is to update this blog at least once a month to share any new information and encourage others to be advocates for themselves.

In December 2022, I found out that I have a brain tumor and swelling in my brain. The type of tumor that I have is called a meningioma.

What is a Meningioma?

A meningioma is a tumor that arises from the meninges — the membranes that surround the brain and spinal cord. Although not technically a brain tumor, it is included in this category because it may compress or squeeze the adjacent brain, nerves, and vessels. Meningioma is the most common type of tumor that forms in the head.

It isn’t clear what causes a meningioma. Most meningiomas grow very slowly, often over many years without causing symptoms. But sometimes, their effects on nearby brain tissue, nerves, or vessels may cause serious disability. Meningiomas occur more commonly in women and are often discovered at older ages, but they may occur at any age. Doctors know that something alters some cells in your meninges to make them multiply out of control, leading to a meningioma tumor.

Symptoms & Diagnosis

Throughout 2022, I started having pounding headaches, feeling/hearing a pulsating sound in my right ear, feeling of deja vu, followed by dizziness and lightheadedness lasting for about 15-30 seconds, multiple times a day. I would consistently feel these symptoms getting in/out of my car, while walking, and even in the grocery store near the freezer/refrigerator section. My mom was diagnosed with vertigo several years ago and I assumed that I was experiencing the same thing.

I saw my primary care physician several times throughout the year about the various symptoms that I was experiencing, and he couldn’t figure out what was going on. Initially, I was diagnosed with an ear infection in my left ear, and I had elevated levels of high blood pressure. I continued to reach out to my primary care physician with additional concerns.

I was eventually referred to see an audiologist to check my ears in October 2022. The audiologist did not find any concerns and referred me to an Otolaryngologist (ENT – Ear, Nose, and Throat specialist) to see if I had vertigo. ENT did a series of tests and didn’t see any concerns with my results. I continued to complain about my symptoms and the ENT specialist suggested that I have a MRI (Magnetic Resonance Imaging) to be completed to check to see if I have pulsatile tinnitus.

What is Tinnitus?

It is the perception of sound that does not have an external source, so other people cannot hear it. Tinnitus is commonly described as a ringing sound, but some people hear other types of sounds, such as roaring or buzzing.

MRI – Magnetic Resonance Imaging

On Saturday, December 10, 2022, I had my first MRI. My husband, mom, and best friend had MRI’s done in the past and prepared me on what the experience would be like. I knew that I would be in a large, tube like, loud machine with a crate surrounding my head. A MRI is a noninvasive way for your doctor to examine your organs, tissues, and skeletal system. It produces high-resolution images of the inside of the body that help diagnose a variety of problems.

The ENT specialist also requested that I have a MRA (Magnetic Resonance Angiography) done as well. This is when dye is placed in your veins to make the blood vessels easier to see during the test. I didn’t drink that much water that day and the tech had trouble finding a vein. I was poked over 14 times and they ended up finding a vein on the back on my hand. When receiving dye through IV, some people may notice discomfort, tingling or warmth in the lips, metallic taste in the mouth, tingling in the arm, nausea, or headache. These symptoms go away quickly.

MRI Results

Early morning on Monday, December 12, 2022, the ENT specialist who ordered the MRI called to tell me that my results indicated that I had a homogeneously enhancing dural based lesion extending along the left sphenoid wing and anterior clinoid process, 30 x 18 x 27 mm (3cm) most consistent with a meningioma. There is also extensive vasogenic edema (swelling) within the left temporal lobe!!!!! WHAT!?! I had no idea what she said!!! Soooo…..basically to summarize and understand all of those medical terms…she is telling me that I have a brain tumor the size of a grape and swelling in my brain behind my left eye!!!

I don’t know about you, but I had never heard or imagined that I would expect to receive this type of information. The ENT specialist advised that she was going to send an urgent referral to the neurosurgery department to determine next steps. I remember receiving this call right before one of my meetings at work. I immediately called my husband and parents to share my results. I tried to remain calm as I googled all of the information that I received from the ENT specialist. I was in shock, but I tried to multitask with finishing my workday and finding out as much information about meningiomas as possible!

Appointment with Neurosurgeon

7 days after receiving my MRI results from the ENT specialist, I had my first appointment with a neurosurgeon on Monday, December 19, 2022. My neurosurgeon was able to answer our questions, concerns, and showed us images from the MRI. The neurosurgeon showed the size of the tumor (pictured) & degree of vasogenic edema (swelling, not pictured).

He shared that I would need to have the meningioma removed within the next few months. I specifically remember him saying, “It’s not IF, it’s when!” The neurosurgeon discussed risks, benefits, and possible issues that may occur. Including but not limited to the need for reoperation, cosmetic deformity, brain injury, stroke, weakness, paralysis, speech deficits, bleeding, infection, coma, and death. We were provided a pre-surgery box/kit with information regarding a craniotomy (brain surgery). The neurosurgeon shared that this is a common surgery, and he has had a lot of success with this type of brain tumor. We asked if this is cancerous and he shared that most meningiomas are benign, but they won’t be able to confirm until the tumor is removed. We discussed that due to the location of the tumor, my incision would be on the left side above my hairline going back toward my left ear.

A craniotomy is performed using general anesthesia. A neurosurgeon makes an incision in the scalp and removes a small part of the skull to create an opening. A surgical microscope is often used to provide a high magnification of the tumor and surrounding critical structures. Using micro instruments (very small tools used to perform complex surgeries), the surgeon removes as much of the growth as possible. Afterward, the doctor closes the hole with the removed portion of skull and stitches the skin together. The surgery & recovery time can vary depending on the size of the tumor. The neurosurgeon assured us with the size of my brain tumor, I should only be in the hospital for 2-4 days. Recovery time can range from 4-6 weeks.

The neurosurgeon was adamant that the symptoms that I was experiencing were not related to the brain tumor. According to the neurosurgeon, symptoms that are related to the tumor would be loss of vision, seizures, memory loss, tingling, or not having the ability to move parts of my body. I did not have any of those symptoms at the time. The neurosurgeon recommended for me to follow up with another MRI in 3 months (March 2023) to see if the size of my tumor changes.

We left the appointment feeling hopeful with our questions answered. We felt confident and comfortable with the neurosurgeon and were eager to know more about my brain tumor and next steps. As we began to celebrate the holidays and the new year, I shared this information with my husband, parents, family and a few friends until we knew additional information. There were a couple of times that I found myself telling my favorite Target employees or a random stranger on the street if they asked me how my day was going. I am so fortunate to have amazing family, friends, and anyone who has been there to support and love us.

January 2023

Although I was completely overwhelmed with my recent diagnosis, I continued to look online for information and learn as much as I could about meningiomas. I joined a couple of Facebook support groups that were extremely helpful: MeningiomaTalk, Meningioma Warriors, & Meningioma Mommas (and Poppas). These groups are great places to ask questions and read about others experiences with this diagnosis. I continued to focus on my family and work, despite knowing what was going to happen next!

Every year, I have an annual eye exam with my optometrist. I had my appointment in January 2023, and during my exam the optometrist shared that I had a retinal hemorrhage in my right eye! What is retinal hemorrhage?! It is a disorder of the eye in which bleeding occurs in the retina, the light sensitive tissue, located on the back wall of the eye. I could not believe it! Less than a month before, I received my meningioma (brain tumor) and vasogenic edema (swelling in my brain) diagnosis!

I am near sighted (having difficulty seeing objects that are far away, but seeing objects that are near clearly). I have been wearing glasses and contacts most of my life and this was the first time hearing this diagnosis! In adults, retinal hemorrhage can be caused by several medical conditions such as hypertension, retinal vein occlusion (a blockage of a retinal vein), anemia, leukemia, or diabetes. I was referred to see an ophthalmologist who reassured me that this will go away with time, and it was probably caused by my high blood pressure.

Since I began to receive back-to-back diagnoses, I wanted to touch base with my OBGYN. In my late teens, I found out that I have uterine fibroids. These annoying fibroids have been the cause of heavy periods throughout my life and I wanted to make sure that there hasn’t been any major change in the size or number of fibroids that I had from my last evaluation in February 2020.

On January 20, 2023, I had an ultrasound and my OBGYN reassured me that there has not been any major change in the number or size of uterine fibroids that I have. I have a total of 4 uterine fibroids. The largest is about 4cm and the smallest is 1cm. My OBGYN discussed my options in managing my heavy cycles: hormone treatment (Mirena IUD vs Depo Provera) or possibly a partial hysterectomy. My OBGYN mentioned that she reached out to my neurosurgeon to discuss my potential options in conjunction with my brain tumor and had not received a response back yet.

Just as I thought the month was almost over with…My mom and I tested positive for COVID on January 25th!!! UGHHHHH You know the symptoms…congestion, runny nose, sore throat, body aches with chills, vomiting, and the list goes ON!! I contacted the advise nurse and was prescribed Paxlovid.

I reached back out to my primary care physician and expressed my feelings of being overwhelmed with my multiple diagnoses. I was referred to speak with a therapist and work with a nutritionist to help with losing weight. I was prescribed medication for my high blood pressure. I tried to make an effort to eat healthier, but I had a difficult time with my busy work schedule to find time to exercise. It took me some time to find a therapist, but I am so grateful for my referral to LifeStance Health. After talking with random therapists, I found one that I feel comfortable with, who looks like me, and I meet with her once a week.

2nd MRI

My headaches continued to increase in pressure, the pulsating (WHOMP, WHOMP, WHOMP) sound was louder in my right ear, and I was feeling even more off balance. There were some days that my head hurt so bad that it was a challenge for me to get out of the bed every morning. In February, I reached out to my neurosurgeon via email/online portal, expressing my concerns multiple times, and did not receive a response. I asked my primary care physician for support, and he reached out my neurosurgeon as well. The neurosurgery department scheduled a 2nd MRI on Wednesday, March 1st and I was scheduled to meet with the neurosurgeon again on Monday, March 6th via telephone.

I had my 2nd MRI on Wednesday, March 1, 2023. Everything went extremely well. I knew what to expect, I drank enough water (so my veins were ready to be poked) and prepared to take a nap during the MRI. I received my results back via the online portal. The test results had a lot of medical terms that I was not familiar with. My appointment with the neurosurgeon was coming up in the next couple of days and I was trying my best not to google some of the medical technology, but I was petrified!

I saw something that indicated that I have uncal herniation. When I looked it up online it shows that it occurs when rising intracranial pressure causes portions of the brain to move from one intracranial compartment to another. It is a life-threatening neurological emergency (according to google). I thought this could be one of my factors to my daily agonizing headaches. I sent several emails to my neurosurgeon about my results, but still did not hear back. I reached out to my primary care physician for additional support to connect with the neurosurgeon as well. At this point I was only taking high blood pressure medication. I wanted to make sure that I was doing all that I needed to do with my lifestyle changes or if there was additional medication that I should be taking. I was taking ibuprofen multiple times a day for the pain, and it was challenging to look at my phone, computer, or watch tv for extended time.

I met with my neurosurgeon over the phone on Monday, March 6, 2023. He reviewed my 2nd MRI results and he said there wasn’t any major changes within the size of my brain tumor. He mentioned that we will NOW just observe my tumor annually and WAIT to have another MRI in December 2023! I continued to question him with my symptoms of having a headache, feeling off balance, sound, and pressure in my right ear, etc. He kept reminding me that those symptoms are NOT associated with my brain tumor. It was so confusing to hear this because in December 2022, he mentioned that the tumor should be removed in a few of months. He told me to go back to my primary care physician regarding my symptoms instead.

I continued to question my neurosurgeon during that call, and he said if you want to have the surgery, we can, but you will still have the same symptoms. He asked me if I would like to come in for an in-person appointment to see the images, further discuss my options, and I said YES! I would like to come in and go over the pros and cons of the surgery. I just didn’t understand how he said I needed the surgery in December 2022, but now he is saying that I don’t need it, and nothing has changed.

CLEARLY I didn’t go to medical school, and he is the subject matter expert, but something wasn’t right in my brain! My symptoms were getting worse, I have more headaches, tingling, spasms on my right side, my mouth will occasionally twitch, feeling of being off balance was increasing as well. My throbbing headaches were continuously getting worse!

I followed up with my primary care doctor about my ongoing concerns and he submitted a referral for me to have an EEG test done. Electroencephalogram (EEG) is a test that measures electrical activity in the brain using small, metal discs (electrodes) attached to the scalp. An outpatient (in office) EEG was completed on 3/10/2023. The testing included sleep deprivation (less than 4 hours of sleep the night before), and photic stimulation (has been the most commonly used method of cerebral activation). The EEG was recorded in the awake, drowsy, and sleep state. During this appointment, no clinical or electrographic seizures were noted. I was happy that I did not show any indication of having a seizure, but I wasn’t sure what else could be causing all of the feelings that were happening in my head.

EMERGENCY ROOM

On Wednesday, March 15, 2023, my husband came home from work and was telling me about his day, when I started making a motion with my hand, which normally means that I am having an episode of tinnitus or deja vu. I began to have my deja vu feeling again and I was unable to tell him about my day or answer my husband’s questions, he describes it as “word salad”. I had these same symptoms daily, but I have been ignoring them since I didn’t know what was going on. My husband called the advice nurse and when I was speaking to the advice nurse about the event, he asked me what the nurse had to say, and I was unable to speak coherently. This resolved again within a couple of minutes, but he decided to bring me to the ER.

I’m so thankful, that my husband took me to the emergency room. My parents met us at the hospital as well. I honestly did not want to go, I initially thought that I was just tired and he was overreacting. I’m so grateful that he did. While I was in the ER, I had a CT scan done and the neurosurgeon that I have been working with was on call that night. I didn’t see him in person, but the neurosurgeon felt that the episodes that I was having are likely to be seizures and recommended that I was given Keppra (anti-seizure medication) via IV and I was sent home with the medication as well. The CT scan of my head showed the 3 cm mass in the left middle cranial fossa (most consistent with a meningioma). Associated edema (swelling) in the left temporal and parietal lobes cause 4 mm of rightward midline shift (meaning my tumor and swelling is causing my brain to shift to the right). I followed up with my primary care physician and a referral was made on my behalf to see a neurologist.

NEUROLOGY

I had my first appointment with my neurologist on March 22, 2023. I am SOOO grateful that my husband took me to the ER despite me trying to convince him that I was okay. My neurologist has been AMAZING! I haven’t met him in person, but he responds to all of my questions timely and has been extremely proactive in signing me up for additional testing to figure out what is going on in my brain.

At this point, I was on Keppra for a little more than a week and I was reading about all of the side effects and had major concerns: Loss of coordination, mental/mood changes, fatigue, depression, and the list goes on! I was still taking the medication and continued to have my same symptoms: deja vu feeling, glitches of memory, and occasionally difficulty with word finding. I also shared that I have consistent headaches, with pressure feeling. From time to time, I would feel tingling on my right-side body, and I also shared right side facial twitching and jerking of right corner of my mouth. I was informed the potential side effects of prescribed medication and was advised to call office if there are any symptoms of possible side effects.

My first conversation with the neurologist lasted a little over an hour. Based on my symptoms, CT, & MRI scans, my neurologist shared that it is likely that I am experiencing focal onset seizures without impaired awareness (simple partial seizures). The reported symptoms deja vu feeling, paresthesia (tingling, numbness in my skin), nausea feeling and unsteady feeling, and also right facial motor symptoms indicative, the seizure likely involving the mesial temporal structure (deja vu), mesial temporo-frontal structure (autonomic symptoms of nausea), and SMA vs motor cortex (facial twitching), and Broca language area (speech difficulty).

The notes following our conversation were extremely thorough and he even documented my plan moving forward:

• Levetriacetam (Keppra-anti seizure) 1000mg daily dose
• Arrange ambulatory 72 hour EEG test
• Neuropsychology test – is an in-depth assessment of skills and abilities linked to brain function. The evaluation measures such areas as attention, problem solving, memory, language, I.Q., visual-spatial skills, academic skills, and social-emotional functioning.
• Due to the notable cerebral edema (swelling in my brain), the neurologist will hold on fMRI (Functional magnetic resonance imaging) for language localization.
• Possibly considering a Wada test (helps your neurosurgeon predict whether or not you’ll have changes to your speech or memory after your surgery.
• Would also consider intra-operative Electrocorticogram (ECoG – a type of electrophysiological monitoring that uses electrodes placed directly on the exposed surface of the brain to record electrical activity from the cerebral cortex) monitoring if resection is planned.

The neurologist even provided images of my meningioma behind my left eye. I know it looks like its behind my right eye, but its my left 🙂 Also the vasogenic edema (swelling) on the left side as well. You can even see the shift in my brain to the right side, due to the tumor and swelling in my brain.

SO MUCH INFORMATION!!!

If you are still reading…THANK YOU! My goal is to post a new blog at least once a month! I have so much more to share! This blog has information up until March 2023!!

I want you to know that I’m okay. If you see me, I look and act the same 🙂 I am happy, loved, and I have endless support from my family and friends. It is so important that we take care of ourselves and be our own ADVOCATE! If something doesn’t feel right, ask a question, and do your own research. If you receive a response that you aren’t expecting or don’t understand…it is okay to ask questions. It is okay to challenge the results and be respectful. There are so many resources available about EVERYTHING! Libraries have a plethora of books and the internet has so many websites, blogs, community groups, and the list goes on!

Thank you all for following along. Please check back for updates or feel free to post any questions or comments.

Thank you for following my Meningioma Journey.

-Arianna Phillips