In the beginning with Chiari Malformation

So, after several attempts and understanding the complaints of my just turned 6 year old daughter Abrianna, we finally learned she has Chiari Malformation 1.

Here are a list of what she was complaining about:

When she was 3 to 4 years old she kept on and on about her stomach.  She also had a lot of swallowing issues with reflux, not as an infant, but actually turning 3.  We did everything possible to get to the bottom of her stomach issues.  We had every test imaginable on her stomach and intestines.  Even a surgical scoping procedure that gave us no answers.  Unfortunately, a few weeks after the scoping she was freaking out at 2am saying her butt hurt and I looked at it and saw about 100 pinworms crawling out.  Yes, shutter and shake at the thought of pinworms crawling out of your baby's butt, especially in the wee hours of the morning.  The medication we thought caused her an awful reaction of severe I mean SEVERE headache and stomach pains....now I think it was the irritation of her fits from the situation.  The stress or something.  Fast forward to last summer 2012 where she would have constant nose bleeds and headaches.  We thought they were related went to the doctor and the ENT.  Nothing again.  NO answers.  Headaches turned into all over body symptoms from her saying things like "I know I have an arm but I can't feel it" to neck pain.  The neck pain with headaches landed us in the neurology office and that sent us to the MRI.

I was so worried about sedation for the MRI for her (since she suffered hallucinations after sedation from the scoping procedure) that I put off the MRI and decided to just wait and see.  Well, that was in the fall and in March one morning Abrianna woke up and was unable to walk.  It was honestly one of the scariest moments for me with her.  She began sliding downhill fast.  It was headaches to weakness to nosebleeds to weakness to headaches to severe neckpain.

March 21, 2013 Abrianna had an MRI of the brain and C-Spine w/out contrast. The neurologist called us and said "Well the good news is that she does not have a tumor or anything in her brain causing these issues, however, she does have Chiari Malformation 1".  He went on to explain it over the phone the best he could and then advised us to avoid blogs and websites because the information would just scare us.  So, I did.  I actually know a father of 6 with Chiari and he functions just fine.  So I just wasn't worried at all.

Now, in the meantime, let us not forget precious Olivia, who is going to be 4 in a few days.  Well at the age of 2 she would tell me she had spiders crawling in her brain.  I thought she was talking about Sponge Bob or some cartoon, so I ignored it.  Then she would spend an entire year coming up to me throughout the day saying "my neck is beeping" "I'm not feeling well" "There is a worm in my head".  I took her to the doctor for earaches I was convinced she had and her ears were fine.  Finally, she began to wake up with headaches and I took her into the neurologist and told him she was waking up with headaches in the middle of the night and early mornings and he said "oh that is not good".  I thought perhaps she was mimicing her sister in complaints, so I didn't think anything would turn up.  So, on July 5th, 2013 we had Olivia's brain MRI with and without contrast.  She did perfectly, woke up a little grumpy from the anasthesia but otherwise perfect.  We learned the following week that she also had Chiari Malformation 1.  So, now I have two babies with Chiari Malformation that I know of.

We have two older children, Victoria 13 and Sarah 12.  Neither of them have been tested for Chiari but one does have Asperger's Syndrome and did suffer from seizures when she was smaller until 5 where she magically outgrew them.  The other has hyperflexible joints and fine motor issues.  A LOT of fine motor and gross motor issues.  Our plan is to have them tested for Chiari as well, but that will have to wait a bit.

So, Friday September 13, 2013 my to littles had their full spinal MRI's.  The following Monday we learned that Abrianna's MRI looked great minus the Chiari.

However, Olivia unfortunately has several Syrinxs going down her CSpine and Thoracic to the Lumbar area.  :(

So Olivia's actual MRI report states:

Identified again is a Chiari one hindbrain Malformation with cerebellar tonsils extending through the foramen magnum to reach the level of the posterior arch of C1.

A sepatated syrinx is identified extending from C4 inferiorly to T3.  The syrinx is sepatated, expands and thins the spinal cord occupying almost the entire spinal canal.  The syrinx measures approximately 5.5 cm in vertical deminsion and approximately 7mm on AP deminsion.  There is intermittent, slight prominence of the central canal in the thoracic spinal cord extending from T4-T5 to T6.  A small syrinx is identified in the thoracic spinal cord at T7 measuring approximately 7cm in vertical deminsion and approximately 3.5 cm in AP deminsion.  Two smaller syrinx are identified in the conus medullaris posterior to T-11-T12 and posterior to T12-L1.  

The Conus Medullaris terminates posterior to L1.  

No obvious evidence for segmentation anomaly is identified in the spine.  

Impression:  There is a Chiari one hindbrain malformation.  Multiple syrinx  are identified in the cervical and thoracic spinal cord as described above.