Gare-Bear Update 9-09

September 21, Gerrit went in for his MRI check-up. Because of insurance difficulties, we were a year over-due for our three year MRI. He has been doing great and there is nothing that we were concerned about, but it is just nice to hear the doctor say, “Ya, everything looks great! We’ll see him again in a couple years.”

Of course, as has been our experience many times, we have no doctor. Since we no longer have a pediatric neurosurgeon at our insurance covered hospital, we had to jump through many hoops of fire to get clearance for his MRI at another hospital here in Atlanta with a pediatric neurosurgeon. I guess there aren’t that many in the country – so when one leaves for greener pastures – they are hard to replace.

With the exception of the early hour in  the day that we had to function and the fact that rain was coming down in buckets – we were in good spirits on the way up to Atlanta and all through the MRI procedure. Dave and I actually got to stay in the room with him this time. We never have before. It was loud, but they gave us head sets to protect our ears.

After the MRI we headed across the street to see the doctor. The nurse practitioner came in and checked him out a little, then asked him/us some questions. After she left I had Dave take the photo of Gerrit and I.

After a bit the doctor came in and introduced himself. He was very nice and we liked him right away. When he mentioned how it had been four years since his last MRI we told him what had happened. At that time I told him that we just needed that verbal reassurance from him that all was well, because we think Gerrit is doing great and have nothing negative to report.

The doctor gave me a look. That look said a lot.

I almost threw up.

“What?” I asked in disbelief. “What’s wrong?”

He then went on to explain that the cyst in Gerrit’s spine has enlarged.  This indicates blockage. If there is blockage, then his brain stem and cerebellum are smooshed. If his brain stem and cerebellum are smooshed, then he could have difficulties – among which, the worst is to stop breathing.

He said we will wait and see what it looks like in a year. A YEAR? A year people. A year can be short when your are trying to save up money for Christmas – but it can be very long if you are waiting to see the fate of your baby child.

Of course, if he has any troubles we would get him in before the year. But if at the next MRI his cyst is still this large, the doctor will want to go in and do exploratory surgery. And he may even want to put in a drainage tube, if he deems it necessary. We don’t want any more surgeries for him, but at the same time are grateful that there are talented folks out there who know how to do this kind of thing. It is rather amazing what they can do these days.

We are putting him on high doses of Mannatech’s Ambrotose powder. We don’t know if it will help him, but back in ’05 when his cyst was smaller – we had had him on high doses of this stuff. I have slacked off over the last several years. It can’t hurt him, so we will get him on that and see at the next MRI if there is anything to it. I will keep you posted on that. Well, of course, I will keep you posted on the whole thing!

But as I try to wrap my brain around the fact that Gare-Bear’s Chiari Journey isn’t quite over yet… I am going to pray for God’s healing hand to calm the cyst and bring it back down to a reasonable size, give me a positive attitude and to be there for Gerrit if and when he needs to talk about it. (Right now he isn’t wanting to talk about it much.) If you are the praying sort – please  keep Gerrit in yours too.

Thanks to all of you who have written me with concern for him and for your support throughout the years. We have some great friends and family around us.

Love to all,


SeptD 022-b


4 responses to “Gare-Bear Update 9-09

  1. OH! MY! GOODNESS! OH! HEAVENS! My prayers are with you! I wish there was something I could do, something, anything! JUST HELP!!!


  2. Kristen

    I stumbled on your blog and just wanted to say hi. Thank you for sharing your story like you have!

    My son Nic (11) has struggled with Chiari Malfmormation as well. You can read about him and his story here if you want.

    I hope and pray your son continues to do well and the Cyst shrinks down! (Is it a Syrinx or another kind of Cyst?) We just had new MRI scans and they found a Cyst as well, but our Doctor said not to worry about it so I’m trying not too. 😉 (easier said than done right?)

    Take care!

  3. Nikki

    I came to your blog to see your chalk board…. and started reading Gerrit’s story. I’m a nurse and I’ve never heard of Chiari… I’ll google it soon.
    Thankyou for sharing your story, I pray that Gerrits cyst shrinks.

  4. Kathryn

    I, too came to your blog to see the wonderful chalkboard and also started reading Gerrit’s story. Prayers have already been lifted and my thoughts are with him and your family as you continue your journey.

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