9 August 2004 - Third General Update- Arnold Chiari Malformation 1 found

Well, unfortunately, I didn't get the "no problems on the MRI, proceed with the growth hormone" phone call that I hoped for today, but I am glad to report that there were no brain tumors or malformation of Virginia's pituitary gland found.

 

I called Virginia's nurse at the pediatric endocrinologist’s office today, hoping to get results on her MRI. I left the house to take all three kids to the dentist, but upon getting everyone in the car, discovered my car was dead- hadn't used it in two weeks from being on vacation, so the battery had died in the heat. Got everyone out of the car, called AAA on my cell phone to come jump me off, but realized that the cell was about to die, and the car charger was still in Kurt's car (at his office 45 minutes away), so I needed to go back inside to charge it while we waited for the tow truck to come give me a jump. Then realized that we couldn't go back inside because the house sitter still has my house key. Vanessa was very antsy about waiting outside because of having been stung 6 times by yellow jackets last week on our porch.

 

The wrecker arrived, went to the dentist (all three kids no cavities and the car did start again after our appointment, so thank God for small favors), went to my sister's school to get her spare key to my house, came home and found a strange doctor's voice on my answering machine- which is never a good sign.

 

I called the office, got Dawn, who asked if I had spoken to Dr. Dickson yet and immediately put me on hold when I replied that I had not, rather than just visiting with me as she usually does, so I knew then that the answer wouldn't be what I wanted to hear. Ugh.

 

Dr. Dickson was very kind but since I had no knowledge about what he was talking about, I wanted to scream at him to just tell me if it's life-threatening or not and put me out of my misery. Eventually I had to interrupt him and ask this, (I was polite about it), and the answer is that it is NOT usually life threatening. However there can be neurological issues and/or paralysis sometimes and we have to see a neurosurgeon to determine if Virginia will require neurosurgery, and he is going to find an appointment for us within the next couple of weeks, for us to discuss it with him or her and determine what needs to happen next.

 

The situation is called Chiari malformation, and as best I understand it from what Dr. Dickson was saying to me through my shock, her brain is trying to grow down into the hole created at the base of her skull where the skull connects to the spinal column, where spinal fluid should be able to pass. It is possible this could just be a condition that needs lifelong monitoring, and that we can proceed with the growth hormone replacement therapy. It is possible that we will need to do surgery on the area. Dr. Dickson did not speculate about his opinion of whether or not her situation was going to be dire enough to require the surgery, but he did say we wouldn't proceed with rGH until consulting with the neurosurgeon.

 

My head is still spinning and I feel a bit sick, but I know God is with us and I am still praying that in Virginia's case, it will not be a serious problem. He said that it occurs in something like 2 or 3 out of 1000 children, and of that small number, only 1 or 2 in 10 need brain surgery right away, so 8 or 9 out of 10 can just be monitored. I am doing some research about what this means. Once I have basic knowledge of the disorder, I can understand what the doctor tells us better. I have never even HEARD of this before, and know nothing about it at all except what I have just started to find this afternoon. I need to find a group of parents going through this, whose kids have Chiari Malformation. I want to know what are the odds of having a kid with this and GHD?! Are they related? My healthy, sweet girl… this can’t be real! But it is. I hate having more questions than answers... "Wait and see" would be my preference, of course, as long as it wouldn't lead to paralysis or neurological problems... the first support board I found upon doing a cursory search had kids dealing with paralysis from it, and I just can't face reading about that possibility yet...

 

Thank you all for your continued prayer support.

Delilah