An arachnoid cyst is a cerebrospinal fluid filled sac that is located between the brain and the arachnoid membrane, one of the three membranes that cover the brain. These rare cysts can also develop in the spine.
Primary arachnoid cysts are pre-natal early gestational abnormalities of the brain. Secondary cysts are less common, and they are the result of a head injury, meningitis, or brain surgery.
Typical symptoms of an arachnoid cyst around the brain is headache, nausea and vomiting, vertigo, and problems with walking and balance.
These cysts target boys 4 times more often than girls. This story is for Mitch whose life was destroyed, and his families life forever altered because of this benign cyst. Mitch had a primary cyst.
This is a story of how socialized medicine played a part in this boys torture. I call it torture because for years Mitch must have been in pain without a way to tell anyone. Just the thought of it makes me sick with compassion.
Mitch was born in a small town in Canada. Canada has a socialized health care system, which is a wonderful system for basic healthcare. There were no worries when you had an infection, or a cold, or a broken leg. Having a baby in Canada was heaven. There was no stress about money, you just went to the hospital and in its relaxed atmosphere, similar to that of home birth, you were able to quietly give birth.
When Mitch was 9 months old, his mother was sitting on the couch nursing him when his eyes rolled to the back of his head, and his head lolled back and forth. “I think there is something wrong with Mitch” the mother jumped up, but as quick as it happened it disappeared. “Oh, it must have been my imagination” the Mother said.
The parents did not know it, but this was their introduction into the world of socialized medicine, and some of the pitfalls of a system that fails when the problems run deeper than an infection.
Mitch began throwing up everyday, all day long. He changed from a happy go lucky baby to the most difficult child you can imagine raising. He cried, stayed awake at night, and did not seem to behave normally. The mother was beside herself, and took him to doctor after doctor. She also had three older children she was raising as well.
Doctors had no explanation for why he threw up all the time, even though it is well documented that it is a sign of pressure on the brain. He threw up on purpose, they said, to get attention. One doctor even slammed his fist on the table “You stop that young man!” He cried.
By this time Mitch was three years old. He was in ECIP (early intervention childhood program), he had been to see a psychiatrist “Is everything okay at home?” the psychiatrist asked, as the mother rolled her eyes. The boy could not talk. Looking back on it, Mitch was in so much pain that he could not verbalize, that it was surprising he was as good as he was.
At four years old a doctor measured his head, and noticed that his head was bigger than normal. He decided to set up a cat scan for him (no mention of an MRI, what was that anyway?) Mitch was put on a years waiting list. The closest cat scan was 200 miles away.
Meanwhile, Mitch had no interest in anything other little boys do. Whats a birthday? What was Christmas? Who cared? He was not learning to talk. He constantly misbehaved, he ran out of the house into the street, and it was impossible to take him to church or to the store without embarrassing mishaps. The mother sometimes heard other kids call him a monster.
Taking Mitch to the doctor was a misery. It would take forever to see a specialist, and Mitch would act up and have to be held, watched, and followed every minute. It was exhausting. When they finally got into see the specialist, he would look over him a few minutes and say something absurd like “he has giantism disease” and dismiss them. These visits were long distance drives, and became very costly.
The mother eventually stopped going anywhere, and did not want people to come over. It was impossible to visit because the boy would act up and constantly have to be reprimanded and redirected. It was pointless to have friends. Friends didn’t understand, they were uncomfortable and they would stop coming over anyway. Very few people have what it takes to help someone when the kind of help that is needed is ongoing. People believe themselves to be charitable when they can do an act or two of kindness, but no one, without pay, wants to give the kind of service this mother needed. And who can blame them?
The Father helped when he could, but he was a truck driver and had a living to make. The father was of great help in going to specialist appointments, and assisting the mother the best way he knew how. Eventually, he went on to marry someone else and have a separate life of his own.
Someone canceled their appointment for the cat scan machine, so Mitch got his x-ray in a month instead of a year. The doctor then told the parents that Mitch had only half of a brain, that there was nothing they could do, and that it was an educational problem. This was the worst day of those parents lives. The mother was devastated!
The mother was a US citizen, a landed immigrant to Canada. The parents decided that it would be best to move to the US to get the help that they needed with the boy. They embarked on this journey that took two years to complete. The Father had to apply for his US work visa, which took a year. The only advice given, during this time, was either to place the boy in an institutional school, or put him in an institution so the mother could have a life.
Meanwhile, Mitch got worse. Life at home, at church, and in the community was difficult. The pain must have been unbearable, and Mitch had no way of communicating except by acting out.
By the time the parents got the child to the neurosurgeon three years had passed. The arachnoid cyst had grown so large it was beginning to open up the skull. The doctor in Canada had misdiagnosed him, causing pain, pressure, and irreparable damage to the brain.
The neurosurgeon in Bismarck, North Dakota took one look at the same x-ray that had been available in Canada and, to our surprise he knew that Mitch had a full brain. Suddenly the family had new hope! For the first time Mitch was offered an MRI, though the family had never heard of it.
Surgery was scheduled, and a shunt was placed inside of the cyst to drain it into the stomach.
I don’t pretend to know all the details of how socialized medicine would work in the United States, but I know that the misdiagnosis and suffering that Mitch went through was directly linked to Canada’s socialist medical system. If the family had stayed there under the belief that Mitch only had half of a brain I believe he would have died an agonizing death.
If the U.S. adopts a socialized medicine program without taking precautions to avoid these kinds of travesties, then potentially thousands of people could suffer. We need to make sure that provisions remain in place to care for the more serious of cases. This families life was devastated. I know, because the mother was me, and Mitch is my son.
There is always hope, and Mitch’ story is not all bad, and some people did help. In my next writing, as penned by Paul Harvey I will tell you “the rest of the story…
