Meet Chiari Warrior – Lori Libby
September is Chiari Awareness month. Each day, I am going to share one person’s journey…in their own words. Chiari malformation is a condition where your brain herniates below the base of your skull, compressing the brain stem and spine. The symptoms are unbearable, at best, and there is no cure…
My story is a simple boring tale. In December of 2013, I developed a headache that wouldn't quit. I do have migraines, but I took my prescription and it didn't touch it. Nothing I took touched it. It was the holiday season, so I was busy with life. too busy to worry about a headache. I pushed through and kept how awful I was feeling pretty well hidden. During January, I knew something was wrong. I could still go about my day, but my headache was getting worse. Hiding it was much tougher. The pain bounced from the back of my head at the base of my skull to my forehead and back. I was worried about brain tumors and cancer. Through all of this, I never said anything to anyone.
By the end of January, I was listing to the right and didn't know it. I thought I was walking normally. I didn't even realize I wasn't until I hit the wall. I'm a teacher and once I realized how often it was happening, I thought for sure someone would tell the principal I was intoxicated. I began to walk with my hand on the wall. I started forgetting words as I talked! I don't know if the pain was really getting worse or just wearing on me, but I kept it to myself. I really thought I was dying.
I'm very right handed, so when I started feeling numbness and a weakening grip in my right leg and arm, I knew I had to go to the doctor. It was the middle of February by the time I sat in front of my doctor. He is fabulous and he examined me, listened to everything I said carefully. He reassured me that we would get to the truth. He said it sounded like Multiple Sclerosis more than a tumor. He was concerned about my being older than the typical onset, but felt it was the direction to look into. I was scheduled to see a neurologist who was a specialist in MS.
March 5th, after a preliminary visit with the neurologist, I had the MRI he'd ordered. By now, I had told my husband and he was super supportive, but upset I had dealt with the headache alone for months. Within a couple days, the neurologist called me to let me know the knew exactly what was going on. There were no lesions in my brain that goes with MS, but the tonsils (Yes the brain has tonsils) were being pushed down through the base of my skull, pressing on the spinal cord causing all my symptoms. He mentioned that surgery would fix it and he was sending me to a neurosurgeon in Portland. The radiologist made mention of the tonsils being low, but said that they didn't have anything to do with my symptoms.
I went to the neurosurgeon. He said the damage that was done to my spinal cord may or may not go away, but with the surgery, decompressive suboccipital craniectomy and cervical laminectomy, the headache would be gone. He informed my husband and I that he does four or five of these surgeries a year and felt confident it would help a great deal. It also happened that there was a surgical cancelation for the next Monday.
Surgery was Monday, June 9, 2014. I was terrified. It was brain surgery. The procedure took three and a half hours instead of the two the neurosurgeon expected. He was careful and made sure there would be plenty of room for the tonsils. When I woke up, the headache was gone, I could move all my fingers and toes, and I recognized everyone who was at the hospital. Relief all the way around. Now the neurosurgeon never said there would be paralysis, memory loss, or anything like it, but being my brain, as I said I was terrified.
It's been just over three years since my decompression surgery. I just had another MRI to double check the decompression. I have symptoms, then they ease up, then hit again in a cycle with no patterns. There is still plenty of room for the tonsils, but the brain is a wondrous organ and while it can find new pathways to compensate for some deficiencies, it can't always.
I still live with the effects of Chiari and I always will. I am very lucky, however. I didn't suffer years of not knowing what was going on. I didn't suffer as much damage to my nervous system as many with Chiari. My hope is that researchers will come up with the cause and the cure in the future so no one has to suffer.
By the end of January, I was listing to the right and didn't know it. I thought I was walking normally. I didn't even realize I wasn't until I hit the wall. I'm a teacher and once I realized how often it was happening, I thought for sure someone would tell the principal I was intoxicated. I began to walk with my hand on the wall. I started forgetting words as I talked! I don't know if the pain was really getting worse or just wearing on me, but I kept it to myself. I really thought I was dying.
I'm very right handed, so when I started feeling numbness and a weakening grip in my right leg and arm, I knew I had to go to the doctor. It was the middle of February by the time I sat in front of my doctor. He is fabulous and he examined me, listened to everything I said carefully. He reassured me that we would get to the truth. He said it sounded like Multiple Sclerosis more than a tumor. He was concerned about my being older than the typical onset, but felt it was the direction to look into. I was scheduled to see a neurologist who was a specialist in MS.
March 5th, after a preliminary visit with the neurologist, I had the MRI he'd ordered. By now, I had told my husband and he was super supportive, but upset I had dealt with the headache alone for months. Within a couple days, the neurologist called me to let me know the knew exactly what was going on. There were no lesions in my brain that goes with MS, but the tonsils (Yes the brain has tonsils) were being pushed down through the base of my skull, pressing on the spinal cord causing all my symptoms. He mentioned that surgery would fix it and he was sending me to a neurosurgeon in Portland. The radiologist made mention of the tonsils being low, but said that they didn't have anything to do with my symptoms.
I went to the neurosurgeon. He said the damage that was done to my spinal cord may or may not go away, but with the surgery, decompressive suboccipital craniectomy and cervical laminectomy, the headache would be gone. He informed my husband and I that he does four or five of these surgeries a year and felt confident it would help a great deal. It also happened that there was a surgical cancelation for the next Monday.
Surgery was Monday, June 9, 2014. I was terrified. It was brain surgery. The procedure took three and a half hours instead of the two the neurosurgeon expected. He was careful and made sure there would be plenty of room for the tonsils. When I woke up, the headache was gone, I could move all my fingers and toes, and I recognized everyone who was at the hospital. Relief all the way around. Now the neurosurgeon never said there would be paralysis, memory loss, or anything like it, but being my brain, as I said I was terrified.
It's been just over three years since my decompression surgery. I just had another MRI to double check the decompression. I have symptoms, then they ease up, then hit again in a cycle with no patterns. There is still plenty of room for the tonsils, but the brain is a wondrous organ and while it can find new pathways to compensate for some deficiencies, it can't always.
I still live with the effects of Chiari and I always will. I am very lucky, however. I didn't suffer years of not knowing what was going on. I didn't suffer as much damage to my nervous system as many with Chiari. My hope is that researchers will come up with the cause and the cure in the future so no one has to suffer.
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