Wednesday, October 3, 2012

All in the Family...

It has been a crazy couple weeks. I think a lot of my emotions, like breaking down during my speech at the the CC Walk, and at church this past Sat. evening, have a lot to do with things that have been on my mind... and I had just not been writing, or telling anyone about. Ben went to see our pcp about a month ago, for headaches... Ben has always had headaches, I think I have just never noticed how much, because I just never paid a lot of attention to it all. But When Kay was diagnosed, I was watching everyone... a little closer. Started noticing that Ben would take Tylenol, Aleve, or Advil... about 4 to 5 times a week. I would ask him about it... and he would play it off, or just say it's all sinus related. I kept asking him to see a doctor... not for the fact of possibly having what Kay has... but if they were at least Migraines, he could get on a Migraine medication or something better to help. He kept saying no... but then after Kay's surgery... I told him I really thought he should... too many happen in a week. So we went to the pcp, talked to her about it all, and about Kaylie's situation... she decided to go ahead and do a brain MRI. We got the scans... and sent them to TCI. Ben said, whatever the outcome, that he really didn't want surgery... that he rather try medications, because he wants us to focus on our kids right now. I told him I would support him either way. So, the scans were suppose to go to Dr. Kula... the neurologist up there. But the scans are always reviewed by all the doctors together at one time. A few days before the CC Walk, we were contacted by Dr. Kula's secretary, they wanted Ben to set up a Skype appointment with Dr. Bolognese (a neurosurgeon). They would not give us any other information, just wanted to set up the Skype appointment. The appointment was made for Oct. 2nd. So many thoughts went running through Ben & I's heads... we were worried. The walk came, and we put on a smiling face, as I met others at the walk, I could only think of one thing that entire day. I really think that is why I broke down in my speech.... I just couldn't handle it all. Days went on, during our wait. There was even a couple days I saw my mom, and I could tell she knew something was bothering me. But I never lead on. We didn't want to say much, until we had all the facts. This past Monday came, at 2pm we waited for Dr. B to call in. We chatted for a couple minutes about things, then he put up the MRIs on the screen, still being able to chat with us via Skype, and point out areas of the MRIs he was showing us. (Which by the way, I have never seen Skype used like this... and was in amazement of the technology, being able to do that!) He said that Ben had a mild case of Chiari/ low lying tonsils. Ben's herniation is 4.1mm. He said that there was a partial blockage, but nothing severe. He said that surgery is NOT needed at this time. But, wants Ben to repeat MRIs yearly. He would like Ben to try some other therapy options before being put on medication. He wants him to keep in shape, work on good posture, loose some weight, look into any food allergies, try cranial massages, and/or acupuncture. If some of that doesn't seem to work with Ben's symptoms, and headaches, then we would talk later about a medication called Diamox. What he explained is it's a medication that helps with spinal fluid flow. We then talked a little about what links Ben, Kay & Mason, and talked a little about us coming up North in Nov. to see Dr. Rekate again too. That was about it.
The part that is under the line, is his herniation. 4.1mm
We have kept this quiet, Ben really wants to focus on the kids, and we will work together to manage his symptoms. We are very thankful that it is not nearly as severe as Kaylie's. Kaylie's situation was a no choice issue... she had to have surgery, she was completely blocked. Things for her could have gotten a lot worse.

With all this said, we have talked to Duke University. They are currently doing research on Chiari 1 Malformation. They are coming to Oklahoma this weekend, to talk to the families here that have more than one member with Chiari in their family. Here is their Face Book link on the study. Here is their website for it. They will be stopping by our house Friday at 3pm. I think this is very important. All though it will never benefit us 5 personally, but by the time my kids have kids... their could be new research about genetic links in how to have better treatments, prevention, or maybe even a cure. We are doing this for future generations.

We will be fine with all this new info, and God doesn't give us things we can't handle. I have to trust in him.

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