Arnold Chiari Malformation

I guess it's time to continue this blog as there is so much to write about but not enough time or energy. 
I have two children (actually they are adults now) that were diagnosed with Arnold Chiari Malformation or Chiari One Malformation.

There are several forms of ACM, but both of my children have Chiari One Malformation.  Since this is a rare condition, I had to do alot of research to figure out what was wrong with my children that caused their symptoms and pain.

My son had severe headaches that kept him bedridden at times and his legs went out from under him. 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.  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.

Once I found a caring pediatrician, my son was diagnosed and had the required surgery to correct the problem...at least for the time being.  After his surgery, he was like a new child.  He ran and played and laughed again.  By the time he was diagnosed, he had lost the majority of his upper body strength and this was at the age of eight years old.

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!

When my daughter was diagnosed, she had headaches but also became dyslexic.  The neurosurgeon had never heard of that happening with Chiari before, so he was a bit baffled.  However, her surgery was schedule but she had more problems than my son.  She was in intensive care 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 when he found out, as that set her recovery back. Luckily, her dyslexia disappeared after her corrective 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.  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.