On January 20, 2014, at 54 years old, I experienced what I casually called an “anxiety numbness event.” My left thumb and index finger went numb, followed by my left lip. At the time, my husband and I were signing papers to buy our home in Arizona. I was nervous about the move, and anxiety felt like the simplest explanation. When the numbness came and went, I did not panic.
For years before that moment, I had not felt like myself. I was tired all the time, short-tempered, and lacked motivation. I just felt worn down in a way I could not explain. I told myself it was stress. It was always stress.
But it never stopped.
As time went on, the events continued. I quit smoking in 2016. My thyroid went completely off track in 2017. Still, the numbness kept happening. In 2018, I finally mentioned it to my doctor in Arizona. He ordered an MRI, but I could not tolerate being in the machine for more than 15 seconds. I never went back.
In 2020, during COVID, we moved back to Wisconsin. By then, the symptoms were getting worse. The numbness spread to my entire left side and sometimes down my leg. Occasionally, my left hand would spasm and pull inward like a palsy. At times, my arm felt like it was on fire. Inside my left maxillary sinus and around my eye, it felt like popcorn popping. Sometimes the pressure was so intense that I thought my eye might pop out.
Everything was on the left side.
What most people find strange is that I never had headaches.
When Things Escalated
In April 2024, I was swimming. I dove down and suddenly could not reach the surface fast enough because of intense pain in my ears. I have not gone underwater since.
Soon after that, I developed a constant sensation of head fullness. It felt heavy, like pressure that would not lift. Because our windows had been open since early March and there was construction nearby, I blamed allergies and dust.
On May 20, I developed a toothache on my upper left side. The head pressure went back and forth between bearable and overwhelming, but it never went away. I decided to see the dentist, thinking I might need a root canal.
Instead, the dentist found something else.
A dental bone CT scan showed inflammation in my left maxillary sinus and a fluid-filled cyst. The dentist told me I needed to see an ENT and have an MRI. In the meantime, I was treated with multiple rounds of antibiotics and steroids. I took Augmentin, then Doxycycline, along with Prednisone. I used Flonase, applied heat, and tried Neti rinses until I had to stop because the fluid went straight into my ears.
Nothing helped.
By June 2024, I was desperate. I contacted my primary care provider through the patient portal. I explained how long this had been going on, how many treatments had failed, and how much pain and pressure I was in. I wrote about my inability to sleep and how my mental health was suffering. I asked for an MRI and an urgent ENT appointment.
I received no meaningful help.
Eventually, my Neighborhood Clinic provider ordered a CT scan, which showed significant sinus trouble. The earliest ENT appointment was in August. When I finally saw the ENT, I was told I was in a “gray area” for surgery. By that point, I was exhausted and worn down. I decided to wait until January, hoping it might clear on its own and knowing I would be on Medicare by then.
It did not get better.
The Diagnosis
In January 2025, I was still suffering. A repeat sinus CT scan finally showed a lesion. In February, an MRI revealed a large mass. On February 28, 2025, a biopsy confirmed the diagnosis.
It was a diffuse astrocytoma, grade 2.
IDH mutant.
Located in the right parietal lobe.
Inoperable.
And likely present for a very long time.
Those “anxiety numbness events” that started back in 2014 were not anxiety at all. They were sensory seizures.
Life Now
I started taking medication on March 31, 2025. So far, the tumor is stable. I have bloodwork every month and an MRI every three months through Mayo Clinic. My labs have been good.
I will stay on my current medication until it stops working. I hope that by then there will be another targeted therapy available.
Daily life looks very different now. I am tired most of the time. The head fullness is still there. I cannot tolerate heat and have learned to love winter. My hands and feet hurt. Most of my body hurts. Inflammation is a constant issue.
I am upright about nine hours a day and sleep about nine hours each night, which I am grateful for. I cannot do most household chores anymore. Massage has become part of daily life just to stay functional. I use calf, hand, back, neck, and foot massagers regularly. My small daily goal is to walk two miles when I am able.
My energy is limited. My desire is low. But I am still here.
Why I Am Sharing This
I am sharing my full history, including the years of quiet symptoms and misread signs, in the hope that it might help even one person. If someone listens more closely to their body, questions the easy explanation, or pushes harder for answers, then this story has done something good.
Sometimes serious illnesses whisper for years before anyone realizes what they are saying.
Author Bio: My name is Joan Campbell, I am 66 years old, and have been married to Al (my soulmate) for 31 years. Graduated from college and had a few jobs. I was lucky not to have to work. I volunteered at a local clinic and became a Volunteer Emeritus. Have pretty much lived my whole life in God’s Country (WI-MN border) with a 7-year hiatus to Arizona. Before I became ill, my husband and I enjoyed golfing and gambling, with many trips to Laughlin, NV, and local casinos. I also enjoyed getting my hands in the dirt and loved to paint and craft.
