Arnold Chiari Malformation - Chiari One Malformation

I have two children (actually they are adults now) that were diagnosed with Arnold Chiari Malformation or Chiari One Malformation... ACM for short. There are several forms of ACM, but both of my children have Chiari One Malformation. Since this is a somewhat rare condition, I had to spend many, many hours doing alot of research to figure out what was wrong with my son. Unfortunately, none of our local pediatricians, or pediatric neurologists had a clue what was wrong with him.

My son had severe headaches that kept him bedridden at times. He began to have several unexplainable symptoms including his legs would buckle from underneath him. These symptoms began when he was 6 years old. It took nearly one and a half years to get him diagnosed by a specialist. I fought more "specialists" that tried to convince me that he had migraines, than I care to count. I have to admit I really showed my ugly side to doctors that thought they knew what they were talking about, but I would do it again as any mother would. Any parent that watched their child deteriorate as I did, would fight anyone and everyone to protect, get diagnosed and help for their child.

As a matter of fact, his pediatrician received a nasty letter from me after she told me that I needed to calm down or I would be labeled a "hysterical mom"! Trust me, she SAW the "hysterical mom" part of me. While that was not my nature in general, I could no longer continue to take him to this pediatrician, only to be told that she "would write down his symptoms" and see what she could come up with. When I argued with the radiologist, who was reading the MRI, I knew I wouldn't get answers.

He admitted that there was something not right about my son's brain MRI, but didn't know what it was, so he would carry my son's MRI in his briefcase to show his colleages. I knew at that point it was time for a change in all his medical care. I had to find someone that was not associated with my son's current pediatrician and start fresh.

Once I found a caring pediatrician, my son was sent to a hospital sixty miles away for a new MRI. Within two days, he was diagnosed with Chiari One Malformation and sent to the best pediatric neurologist in the state! This pediatric neurologist could actually read an MRI, unlike the other two that I had taken my son to and was very familiar with Arnold Chiari Malformation. By this time, he had lost the majority of his upper body strength. She scheduled his surgery immediately to correct the problem.

His brain surgery took it's toll on me. Having lost one son, I was terrified I would lose my only other son. However, he came through it like a trooper and was back in school within ten days. I believe his most painful part of the whole ordeal was missing out on recess at school for six weeks! It was great to see him run, play and act like a healthy eight year old again.

When my daughter was diagnosed, she had headaches but also became dyslexic. (Unfortunately, the excellent pediatric neurosurgeon that performed my son's surgery had retired, so I had to find a new neurosurgeon that was familiar with ACM.) Luckily, this new neurosurgeon studied at Duke University, where they have had an ongoing study of ACM for years. The neurosurgeon had never heard of dyslexia appearing in an ACM patient before, so he was a bit baffled. As a mother, I wasn't sure if I could endure another one of my children having brain surgery, but knowing how my son's surgery turned out, I was optimistic.

The pediatric neurosurgeon performed my daughter's surgery but she had more problems than my son. She was in the pediatric intensive care unit for nearly a week, due to the fact the doctors could not get her pain under control. Then a doctor in the pediatric ward ordered her to have physical therapy, which her neurosurgeon was furious about when he found out, as that set her recovery back. She was in such extreme pain after the physical therapy, that her neurosurgeon informed all medical personnel, including other doctors that no one was allowed to make decisions or write orders for her any further. He told them that he didn't care if he wasn't on call, if they had a question or problem, HE was to be called! Luckily, her dyslexia disappeared after her decompression surgery.

My advice to parents and adults is, if you or your child is having severe headaches along with unexplainable symptoms, PLEASE have your physician order an MRI to rule out Arnold Chiari (KEE ARE EEE) Malformation. I have found that there are still alot of medical professionals that have never heard of this condition, so research can help you. Be informed. Do NOT let anyone convince you that you or your child is having migraines, if you don't truly believe it. BE PROACTIVE in your medical treatment! You know your (or your child's body) better than a doctor that examines you for ten minutes. My children each had severe headaches at the base of their skull/neck. That is because the fluid pressure built up and that is where the pain was. I told one pediatric neurosurgeon that I, as a layperson KNEW that migraine pain was NOT at the base of the skull.

It was a long, hard ride but I succeeded in finding the right pediatrician that actually knew there was something terribly wrong with my son. Luckily, he saved my son's life. It has now been eleven years since my son's surgery and eight years since my daugher's surgery. Both graduated at the top of their class, attends college/graduated from trade school and doing well. They each still have an occasional severe headache, but nothing like they had before the decompression surgery.

While Chiari One Malformation never goes away and there's a small chance that further surgeries are needed, it is possible to live a happy, healthy, normal life with ACM. My children are living proof of that!