This too shall pass: Moore describes battle with rare brain disorderBy JAMIE PATTERSON,
Clutching his Bible and hugging his wife, Michael Moore prepared to head into surgery to address a rare condition that only affects about one percent of the population.
He vowed that if everything went fine with his procedure, he would spread the word about his condition in the hopes that it would help someone…even just one person.
For the next eight hours, brain surgery was performed on Moore. A week later, he sat in the office of The Yazoo Herald, ready to share his story. He kept his word and continues to spread his message.
“I am moving forward,” Moore said. “But I keep thinking that if I could help just one person, I would feel like I am doing a great deed.”
Moore, 49, a Yazoo City native, was recently diagnosed with Chiari Malformation and Syringomyelia. Never heard of it? You’re not alone. The medical community acknowledges that there is a lack of awareness surrounding the serious neurological disorders.
Chiari Malformation is a condition where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and the spine. It only affects about one in every 1,000 people.
Syringomyelia is another condition where a fluid-filled cyst, known as a syrinx, develops inside the spinal cord, stretching the cord and damaging nerve tissue. About 90 percent of the cases are caused by Chiari Malformation, but there are no true explanations as to why the cysts form.
With Chiari Malformation, most patients suffer from a number of symptoms including severe headaches, balance problems and weakness in the limbs. It is also unknown as to why surgery fails 20 percent of the time.
Moore, who is also a veteran, said he has always had severe headaches. But, like many people, he shrugged them off. But after battling a bacteria infection, his journey began into diagnosing his rare condition.
“Things began to make sense and come together,” Moore said.
Due to bacteria infection, Moore had surgery in his knees and elbows. But even after his procedure, he began to deal with severe headaches. And then he woke up one morning and couldn’t see out of his right eye.
“I was on steroids for four months because it was so inflamed,” Moore said. “And then I began to have symptoms similar to vertigo. I felt like I was walking straight, but I was really leaning to my left.”
Moore headed to the FYZICAL Therapy and Balance Center, where he went through a number of treatments and exercises for about six weeks. It was then that a physician suggested that an MRI be performed.
He was then diagnosed with Chiari malformation type I. Headaches, often severe, are the classic symptom of Chiari malformation. They generally occur after sudden coughing, sneezing or straining. People with Chiari malformation type I can also experience neck pain, problems with balance, poor motor skills, limb numbness, dizziness and even speech problems.
An MRI was then performed on Moore’s spine. A cyst was discovered, linking Syringomyelia.
“I was off balance because the cerebellum fluid was putting pressure on my spine,” Moore said. “They then compared by MRIs from August of 2018 to June of 2019. It showed that the cyst on my spine has grew six times its size.”
Moore was referred to Dr. John Lancon, a French surgeon at St. Dominic Hospital, who had performed hundreds of procedures. His youngest patient was only two days old, and Moore discovered that he had an 84 percent success rate.
Moore had a craniectomy, or brain surgery, on Nov. 1. The surgery involved removing part of his skull, sewing a patch into the natural covering of his brain.
Surrounded by family and friends, and holding his Bible, Moore prepared for the surgery relying on his loved ones and his faith.
The procedure normally takes about two to four hours. But with a drastic drop in blood pressure, Moore’s procedure last close to eight hours.
“They had to cut through about five layers, which left me with over a hundred stitches,” Moore said. “Then, I received about 36 staples. But it freed up enough space so that the cerebellum fluid could draw back up and balance out. I will be a patient for life, monitoring the cyst.”
Moore will be placed on home health and require a number of physical therapy sessions. But he is already speaking to people about this condition in the hopes to bring awareness to others.
“Don’t just shrug it off as migraines,” Moore said. “Don’t sugarcoat what might be happening within your body. Take the preventive steps, seek help. You never know, and I want to encourage everyone to get checked out.”
Moore is quick to add that he refuses to complain. His goal is to enlighten. He and his wife Martha are already planning fundraisers and other awareness efforts to spread the word.
“My faith…when I feel weary, I think about the book of Job,” Moore said. “God will not put any more than you can handle. This too shall pass.”
“But the support from family and friends has also been great,” Moore continues. “My wife has been there the entire way.”
Through talking, Moore has already encountered people who are experiencing the same journey. His accountant’s daughter was recently diagnosed with Chiari Malformation.
“I was buying flowers in the grocery store for my pastor who was sick, and I decided to buy some for my wife too,” Moore said. “The cashier said, ‘somebody must have been nice.’ And we started talking. Come to find out, her daughter in high school was recently diagnosed too. It is a rare condition, but those people had already been put in my path to talk about it.”
Had Moore not done the surgery, he would have possibly had nerve damage and even paralysis.
“I am just thankful that we addressed it now,” Moore said. “That is what I would like to spread through my story. Take any symptom serious and get checked out. I will continue to push forward with my own journey. But I can just help one person, that’s enough.”