Hey, everybody!!!

Great visit today with the pediatric neurosurgeon in Louisville. He was very informative, gentle, and thorough with Whitaker. After we introduced ourselves to him, he went straight to Whitaker and asked him the questions and not us and checked him out all over. He looked in his eyes, ears, and mouth, and he discussed his headaches with him. He also checked his reflexes and balance. Then he took all of us to the room where he had some of Whitaker's images up on a screen.

He explained to us where the Chiari was, exactly what it looked like, and showed us where there was less than adequate spinal fluid flowing. He explained about this pressure and exactly when this would cause pain (at the point of exertion, or when laying down) which was completely consistent with Whitaker's reports of headaches when running, coughing, and when he wakes up in the mornings.

The measurement of Whitaker's "tonsil," which is part of the cerebellum, but should not be confused with the tonsils in the throat, is a little over 2 cm beyond where it is supposed to be. He explained to us that when you are growing, your brain grows under one set of messages and your skull expands with it because of the room left in soft spot. However, the back of the skull, for some reason, takes its instructions to grow from another location in the brain (the pituitary gland). If a child is growth hormone deficient, the brain keeps growing, but the bones in the back of the head do not. Since the cerebellum has no where to go, it smashes down into the upper spine.

At this point, surprised, I asked if the growth hormone deficiency and the Chiari Malformation are related. He said they are ENTIRELY related. This was interesting news to us because we thought they were just separate problems. He went on to explain that Whitaker's Chiari is large, and that in any other circumstance, we would be going straight to surgery. However, over the last 20 years they have seen a number of children with GHD and Chiari have improvement of the spacial orientation in the back of the skull simply from adding growth hormones and the consequent result of them.

Therefore, he said he would like to start Whitaker on growth hormone treatments right away and have us come back for another MRI in 3-4 months to check for improvement. At that time that we would also do a spinal MRI to see if there are any syrinxes and if there are, then we will have to do surgery at that time. Syrinxes are pools of spinal fluid in the back and spinal canal and if left there, can lead to permanent nerve damage. Even with growth hormone treatments, Whitaker's situation may not improve enough to bypass surgery, but in a few months it will be evident whether or not the increase in size will improve his Chiari.

Let me say, we were in the office for 3 hours. We got there at 11, which was a bonus because I had forgotten our insurance card, but I knew I could run downstairs three floors to the endocrinologist's office and they would copy it for me. This worked and we got checked in and waited. It was about 1:00 when they put us back in a room and we left there at 2:10. The doctor was very young, which we had expected, but he was also extremely, extremely intelligent. I don't know how to describe how brilliant this guy must be. We asked him about the genetic link and he said that doctors understand that there is one, but they do not understand yet why or what the link is. Other than infectious diseases, almost everything about us has a genetic link, according to him. Some are stronger than others.

He mentioned that he spent time in Cincinnati Children's Hospital and they actually have a Chiari unit, or a study, or something dedicated to Chiari there. He said that he did A LOT of Chiari surgeries there and that they had 35 families with multiple siblings with Chiari. We asked a little bit about the surgery, understanding that it is still a very real possibility, and he said that it is safe and he does them now at least once a week. Then I asked him why it is so rare, to which he kindly answered, "If you're a neurosurgeon, it's not rare."

The fact that it is so routine for them actually makes me feel better. I am so happy we have some time to see if the growth hormones work. We asked about contact sports and the risk for rupturing. He said there is a risk for rupturing, but he was not of the opinion to restrict activities now. After surgery would be a whole different story. The doctor also agreed to look at the MRI of Tretter that we sent to him, and explained that all future MRIs should be done at Kosair because they know the exact angles and images he wants. Completely understandable. We will be happy to comply. :-)

Obviously, Whitaker was thrilled with this news and so are we. I will post updates on how the growth hormone works, and if I forgot anything, I'll add it later. We are so thankful that at least the timing is such that if we have to do something, it can be in the summer. Keep the prayers coming - it is all going to work out.