Jeannie Brown

@jeanbrown620 | contributor
I am a daughter, wife, mother, lawyer, writer, creator, crafter and knitter. I happen to be living with a couple of disabling conditions, which cut short my professional career. I love reading and sharing stories of living with disabilities and chronic illnesses.
Community Voices
Jeannie Brown

When My Rare Brain Tumor Diagnosis Didn't Fully Explain My Symptoms

I have a benign brain tumor which is called an acoustic neuroma, or vestibular schwannoma if you want to be fancy. It’s a rare tumor. One person in 100,000 will be diagnosed with an acoustic neuroma in any given year. Picture the biggest college football stadium in the U.S. See all those people? Just one will be the unlucky one diagnosed with an acoustic neuroma. It was 2010 when I was diagnosed and I was 33 years old. I had been so sick — incredibly fatigued, lightheaded with painful headaches and pressure in my head — that I was happy to have found a reason for my suffering. The only problem is that while we found something that definitely needed treatment, the tumor was not making me sick. Then neurosurgeons told me that my symptoms were not caused by the acoustic neuroma. They said the only symptoms usually caused by an acoustic neuroma are loss of hearing and dizziness. Wanting to believe we had discovered the problem, I told myself that my lightheadedness must have actually been dizziness and that my headaches weren’t so bad. I so badly wanted to focus on living my life — raising my young family and advancing my career — that I stopped questioning why I was sick and denied how I really felt. What I wish I’d known then is that if your rare disease doesn’t explain your symptoms, there is probably something else going on. It wasn’t until six years after the diagnosis of my brain tumor that I realized there might be another explanation for my symptoms. For Christmas 2016, my parents gave me a Fitbit, and I soon noticed that my heart rate was often accelerated. I engaged in some internet research and began my long path to a diagnosis with postural orthostatic tachycardia syndrome (POTS). I wish I had not spent so many years believing the brain tumor was my only medical condition. I wonder how my life and career would have played out if I kept pushing for an accurate diagnosis instead of pretending that nothing was wrong. The moral of the story is: if your symptoms haven’t been explained, keep looking. You owe it to yourself.

Jeannie Brown

The Beginning of My Journey to a POTS Diagnosis

Sometime during the summer of 2010, I started feeling lightheaded when I would stand up. I told my doctor that when I stood up, I felt like all the blood in my body rushed to my head and I heard a “whooshing” in my ears and felt like I was going to pass out. I was getting migraines for the first time in my life and had extreme fatigue. My doctor gave me a prescription for an MRI along with a referral to a neurologist. I scheduled my MRI for an evening so I wouldn’t miss work. I was working full-time as an attorney and my three children were all under the age of 5 years old. When I checked in for the MRI, the technician told me that because of the late hour she couldn’t give me a CD of the results. But when the test was done she did give me a CD, which should have been my first clue that something was wrong. By the time I got home, my phone was ringing. It was the physician on-call for my primary care practice, whom I did not know. I remember her saying “the MRI showed that there is a mass in your brain.” Whoah. A brain tumor. I did not know what to say or what to think. The doctor continued to explain that the mass was probably not cancer. Which was somewhat of a relief. But then she said I had to go right away to an emergency room. Not just any emergency room, but an ER with a neurosurgeon on call during the evenings. My anxiety went back up through the roof. But I didn’t ask many questions. I just said OK, I’ll get my husband to take me to the ER. I was in such shock during this call that I let my husband walk right out the door. It was the evening of the first NFL game of the season, and we ordered a pizza to eat while watching. He would be back in 20 minutes. My first thoughts were of work. If I might be headed into brain surgery that evening, I wouldn’t be at work the next day. I called my best friend from work, Pat, and relayed to her what the doctor had told me. I wanted to be sure that she told my bosses what happened in case I wasn’t able to talk to them the next day. Pat asked how my parents were handling the news. I told her my parents were at their shore house (about two hours away) and that I didn’t want to bother them. Pat convinced me I had to call my parents and I agreed, imagining being wheeled into surgery that night without having told my parents that anything was wrong. I don’t remember the call to my parents. They immediately packed up and started on the road home. They would meet me at the hospital. After these calls, all I had to do was wait for my husband to come back. I couldn’t help myself from sneaking upstairs to take a look at my children who were all fast asleep. Would I be there to see them grow up? The word “probably” echoed in my head. The tumor was “probably” not cancer. “Probably” wasn’t good enough. But it was all I had. If it wasn’t cancer, I wouldn’t die, and this wasn’t a big deal at all, right? My husband finally arrived and I told him the news. He immediately went into protector mode, intent on his job of getting me to the ER. My mother-in-law came over. We hugged and I cried for the first time since I heard the news. We didn’t put our concerns into words, but we were both thinking about my children growing up without a mother. They were expecting me at the ER and we were shown to a room right away. Now there was nothing to do but wait for a neurosurgeon to look at my MRI pictures. I couldn’t just sit there, so I downloaded Scrabble on my phone my husband and I started to play. The nurse was great, and I told him I was expecting my parents to arrive; that they were anxious to know that I was going to be OK. I remember he said “I don’t blame them.” That struck me as odd. It “probably” wasn’t cancer. I wasn’t going to die, so what was there to worry about? I can’t remember how long we waited, but by the time we were joined by a physician’s assistant from neurosurgery, my parents had arrived. They hugged me and I could tell that they weren’t thinking about my children, they were worried about me. The PA informed us that a neurosurgeon had looked at my films and concluded the mass “almost certainly” was not cancer. I would have a 10-12 hour surgery and be back to myself. The neurosurgeon thought the presence of the tumor in my brain explained my symptoms and that I would feel better after surgery. I had more questions than the PA could answer. She offered to admit me to the hospital for the night so the physicians would see me at their rounds the next morning. My husband didn’t think I should stay, but I couldn’t pass up the chance to talk to a few neurosurgeons. If I didn’t stay for rounds, it might be days until I got to see a neurosurgeon in his or her office. I needed more reassurance now. My family left and I remember being wheeled around the hospital. I looked up at the ceiling as we drove by the sign that said “Stroke Unit” and I started to cry again. I didn’t belong here. I was 33 years old. I had babies, including a baby who was still nursing once every night. The nurse in the stroke unit borrowed a breast pump for me from maternity, and I tried to pump but my body didn’t cooperate. I was too strung out. The nurse offered get the chaplain for me, but I declined.  It “almost certainly” wasn’t cancer, so what right did I have to be upset? Somehow, I fell asleep. My husband joined me around 7 a.m. and we saw three or four neurosurgeons as they made their rounds. They gave me the good news that it might be possible for me to avoid surgery by having radiation. I would have to go to one of the big city hospitals and see what the specialists there recommended. But these doctors reassured me that my symptoms would resolve after I was treated. I finally went home, nursed my baby, hugged my other children and exhaled. In the next week I would see specialists at the two big city hospitals near me and decide on a 26-session course of fractionated stereotactic radiation therapy. The tumor was killed, but my symptoms didn’t resolve. I would spend the next seven years in denial about how sick I was. I thought that if the tumor was dead I didn’t have any reason to be sick and, therefore, wasn’t “really” sick. It would be seven more years before I heard the words “postural orthostatic tachycardia syndrome.” And two more years before I was formally diagnosed and given a treatment plan.

Community Voices

When Doctors Dismiss Your Symptoms As Anxiety

Seeing 3 specialists at a nationally accredited local hospital for a second opinion. I've had numerous doctors say "It's just a little anxiety", or even that I'm a "faker", when I've had an abnormal MRI, pins and needles in my limbs, confusion, fatigue, dizziness, God I even have to use a quad cane now just to get around, and a wheelchair if it's hot. It's 90 degrees where I am and my husband wanted to go out and enjoy the weather, but I didn't want to risk falling. He's amazing and decided to stay in with me and watch movies.

I had an EMT the other weekend dismiss my chest pain as anxiety the moment he walked in, asked if I had diabetes, and I said "my husband does"

What does the EMT say? "Oh, so HE'S the one who needs help, not you?"

I've had symptoms and positive MRI/Blood results since high school and I'm turning 28 next month. Yet even with evidence I get pushed off as "anxious". This is my last ditch effort to find an answer. If this doesn't work I'm throwing in the towel. I'm even discussing with my boss about stepping down at my job because my symptoms have gotten so debilitating.


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Community Voices

It angers me when the lab work comes back "normal"

I have been having a migraine for 4 days straight, I am not normal. My fatigue is a 23 out of 10, it exceeds the pain charts they provide me.

I do not know how to answer, "you can handle it though, can't you?"

My body is fighting and aching against the gravity of going up the stairs, getting out of bed, reaching for my water bottle, and even when I am typing this. It feels so heavy to do anything. I just want my doctors to believe I am going through pain, and to just HELP me. Is that too much to ask for? #ChronicIllness #Lupus #Migraine #MixedConnectiveTissueDiseaseMCTD

5 people are talking about this
Community Voices

My brain before & after #ChronicIllness

<p>My brain before & after <a class="tm-topic-link mighty-topic" title="Chronic Illness" href="/topic/chronic-illness/" data-id="5b23ce6f00553f33fe98fe39" data-name="Chronic Illness" aria-label="hashtag Chronic Illness">#ChronicIllness</a> </p>
9 people are talking about this
Community Voices

no sound

no light

they hurt my head

I hurt

I ache

I take my meds

no laughs

no romance

in this bed

I moan

I groan

my husband said

and yet

it's all

inside my head

Community Voices

The Attack

Five foot three, I stand my ground.

I don’t scream; don’t make a sound.

It pushes me; it pulls me down.

Were it water I’d surely drown.
It shadows me with constant threat

of deeds of undone, of goals unmet.

It meets me at first morning light

Despite the rest of yesternight.
Some days it tries to make me think

I will not drown, I will not sink.

I make some plans and say a prayer

It crushes me; it does not care.
What could be so bad you ask?

What holds me down, takes me to task?

What fights me, has me under siege?

You know its name, it’s called fatigue.

Jeannie Brown

My Complicated Relationship With LinkedIn as Someone Who Can't Work

Every once in a while I check out what’s going on at LinkedIn. I usually end up regretting it. Not because of the content; I always find a few interesting articles. I regret it because I see a few job postings that sound interesting. I start thinking “I could be a good fit for that job.” Then I remember that I can’t work. I haven’t been able to work for five years now. I live with a few disabling conditions. I have postural orthostatic tachycardia syndrome (POTS). I have chronic migraine. I have a “benign” (meaning non-cancerous, not harmless) brain tumor. These conditions may all be related. Or I might just be unlucky. I have spent hours thinking about what kind of job I could do. I always end up with the same conclusion: there is no job I can do with my limitations. I endure two or three migraines a week, each stealing hours of my day. I can’t work at all on migraine days. I don’t know when the migraines will strike, but I do know that I would miss multiple days of work every week if I had a job. And I would, of course, be fired. Additionally, because of POTS, I cannot stand too long and I cannot sit too long. If I do either, I end up light-headed with a racing heartbeat. Another thing I cannot do is look at a computer screen for more than 15-20 minutes at a time. I simply have too many limitations to get or keep a job. I try to look at the positives in my life. I used to work long hours, but now I have much more time with my husband and children. I am blessed to get monthly disability insurance payments. My husband has a job that provides me with great health insurance. But I still miss work. I miss the challenges. I miss the sense of accomplishment. I miss working toward short and long-term career goals. I miss the friendships and the laughter. I let myself be sad about it sometimes. And then I stay away from LinkedIn for a while.