Living With a Vestibular Disorder
My husband has a brain tumor. It’s just a tiny little thing between the size of a pea and a peanut. It’s not cancerous and it’s slow-growing. Although it is not life-threatening, it is life-altering.
Before we knew that it even existed, my husband would get dizzy spells and feelings of vertigo accompanied by headaches and nausea. Every so often they were so bad, that he needed to call in sick to work. I remember him diving onto the bed, face first, and burying his head under the covers in an attempt to get the room to stop spinning. Or suddenly plopping down in the chair in our bedroom as he readied himself for the day because he thought he was going to fall down. Sometimes I would offer to drive him to work, but he always refused.
Something’s Not Right:
These dizzy spells were our first sign that things just weren’t quite right, but we never went to the doctor over them. We attributed the incidences with eating something that didn’t agree with him or not drinking enough water. After a few days, the symptoms would lessen.
Then, with no warning, he woke up one morning and his ear was ringing. We had just returned from a concert and thought that maybe the music had been too loud. But the ringing didn’t stop. His ears felt full and pressured. It was summertime, and he had been swimming. I get wax build up in my ears and thought that was his problem. He made an appointment to have the wax removed, hopping the high-pitched sound and the clogged full feeling would cease.
When his appointment arrived, the doctor took a look. My husband did have wax build-up but in the opposite ear. The offending left ear that felt stuffed with cotton balls, had nothing wrong with it. No wax, no infection, no problem, right? He came home discouraged as the ringing continued.
It was so loud that my husband had trouble hearing me over the sound. I had to speak more loudly or have him look at me when I talked to him. He also had trouble sleeping. The ringing sounded louder at night or when it was quiet. We purchased a sound machine for night time use.
The sounds in his head continued. They nagged at him and jangled his nerves, frustrating him. He looked online for solutions to Tinnitus (ringing in the year). He just wanted it to STOP!
Specialists:
Finally, he went to see an ear, nose, and throat specialist. No diagnosis and $3000.00 later, his ears were ringing as loudly as ever, and he was losing his balance more often. He decided to get a second opinion and changed doctors. This new specialist asked the all-important question, “Have you had an MRI?” He had not.
As soon as the MRI was completed, this new physician saw the problem. My husband was diagnosed with a vestibular schwannoma (also known as acoustic neuroma). Schwann cells are designed to wrap around nerve fibers like onion skin to protect nerves. Instead, his cells had grown together like a wart and formed a tumor on the nerve leading from his inner ear to his brain. This pea-sized problem causes ringing in the affected ear, hearing loss, unsteadiness, loss of balance, and dizziness. As it grows it can cause facial numbness and weakness or loss of muscle movement. In rare cases, it can compress the brainstem. At that point, it is life-threatening.
Upon hearing the news, that my husband had a brain tumor, we quickly made an appointment with specialists and surgeons at USC Medical Center. We were hopeful that if he got the thing out, the symptoms would go away. Right? Nope, wrong!
We did not know at the time that doctors usually take a wait and see stance when dealing with these tumors. After all, it really is “brain surgery”; things can go wrong. Also, the patient usually loses all hearing in the affected ear as a result of the operation. When the tumor is less than 2 cm, and the symptoms can be managed, doctors recommend watching it through MRI’s and regular tests by an audiologist to monitor the hearing loss. These tumors are usually slow-growing. Some never grow at all. Since quality of life does not really improve after surgery, it is recommended to keep an eye on the tumor until the pros out-weigh the cons of brain surgery.
What We Learned at USC:
- If he had the tumor removed, my husband would most likely lose all of his hearing in the left ear, but still retain the ringing sound that was causing the daily torment. It turns out this constant noise was the brain’s compensation for hearing loss. Sometimes the nervous system has a mind of its own and makes up sounds in order to compensate for deficiencies. Bottom line, my husband was going to need to learn to cope with the constant jangle for the rest of his life. Since my husband could still hear out of the affected ear, it was best not to mess with it.
- Physical therapy can help with balance issues. A healthy person relies on the vestibular system, sight, and touch to orientate us to our surroundings and grant stability. When the vestibular organs are working properly, they send symmetrical impulses from both the right and left sides. Since my husband had the tumor on the vestibular nerve, he was getting mixed signals. (One side was sending one message while the other side sent a different message to the brain.) If he strengthened the visual and pressure messages sent to the brain, he could make up for some of the losses in balance.
- He was told not to do flip turns in the pool because orientation is more difficult in a liquid environment.
We took the doctor’s advice and agreed with the wait and see option.
Hide and Go Seek:
For the next few years, my husband hid his symptoms. The ringing and the balance issues were still obvious, but I didn’t realize that he was struggling with a myriad of other symptoms as well. Doctors confirmed that patients with vestibular disorders struggle with vertigo, dizziness, and difficulties with spatial orientation. But they did not elaborate. Patients with this condition can also struggle with visual, cognitive, and psychological issues. Simple things like computer monitors or Florissant lights can be bothersome. Traffic and crowds can cause discomfort. When your brain dedicates so much energy to sight, sound, and balance, simple activities such as recalling details becomes difficult. Short term memory slows down. And always his ears ring and roar, buzz and whoosh.
Never one to complain, he is an optimist by nature, so he did not explain some of the other struggles associated with the disorder. Maybe he thought they’d go away. Maybe he didn’t even attribute the symptoms to his tumor. But they were there, I just didn’t know enough to recognize them for what they were.
Recently, I found a helpful website, vestibular.org. We went over the list of symptoms together. As I gained understanding regarding the problem, a light went on and I suddenly understood why he acts the way he does.
Oh! That Explains It:
Now I know why he holds onto the dining room chairs when he is standing and we are talking. It has to do with balance and spatial orientation. He is grounding himself. It’s also why he sits in a chair and holds his head in his hands when resting or thinking.
During the day, he turns off the overhead lights and opens all the blinds, preferring the natural indirect light of the day. Sensitivity to light, glare, and moving or flickering lights are visual symptoms of vestibular disorders. It also explains why he has trouble using computers for any length of time.
At night, he turns on the bedroom lights, even if I am already in bed. He’s not being rude; he needs them to orientate himself to his surroundings so he doesn’t stumble or trip.
He also wants windows open and won’t let me close our bedroom door at night. It has something to do with the pressure in the room.
Four Years Later:
The tumor has grown only slightly, maybe a millimeter or two. At 1.7 centimeters, it is slightly smaller than a peanut and still under the size suggested for operations.
The ear: Although my husband’s hearing has only deteriorated slightly, his ears still ring constantly. When he is stressed or tired, they ring more loudly and sometimes even pop and crackle. He says they are always, “noisy”. We run an air purifier in our room at night so that he can sleep. I am not sure if it helps or not.
Balance: Nowadays my husband works on his balance by bike riding, instead of swimming. He also walks, does his exercises, and lifts weights.
We will continue to research, watch, and wait.
Great article!