Chiari 1 Malformation – On the Road to Decompression Surgery for Andres

Another visit with Dr. George, the neurosurgeon, today.  This was our last preoperative visit – eek!

Surgery is still scheduled for August 7th.

Good news:  The CT scan showed Andres’ spine is very stable and he will not need any stabilization surgery on August 7th.

Bad News:  At this visit, Dr. George told us it is very likely he will have to go into at least a few of the dura layers during surgery.  He will not know until he has started the surgery how deep he will have to go.  He will be grafting layers of dura to compensate for the hole he will be making to allow Andres’ brain more room in his skull.  He will be completely removing a piece of the back of Andres’ skull as well.  (The dura is the membrane between the brain and the skull.)

More Bad News:  Dr. George also clarified with us that this surgery may not have any effect on Andres headaches.  Somehow I missed that at the first appointment.  Dr. George says the focus of this surgery is to normalize the Chiari and to resolve the syrinx.  Because of the location of Andres’ headaches, it lowers the chance that the surgery will have any affect on them down to 30-40%.  That 30-40% isn’t even a full resolution, only if there is any affect at all.  That’s a big blow to me.  I have been weighing the risk/benefits of this heavily with a headache-free future on the benefit side.  Chiari headaches are typically at the back of the head, and for these types of headaches there is a 90% chance of resolution after surgery.  Andres’ headaches are atypical, hence the lower percentage. 

I talked to my mom today, and we both agree that if the Chiari is causing pressure on Andres’ brain, it makes sense that a decompression will lessen the pressure and help the headaches.   I find myself visualizing the surgery and it’s impact on Andres’ brain, allowing his brain to sit right in his skull with plenty of space in all areas between the brain and the skull.  How I am praying God will allow this to happen!

So at least now I have a very specific prayer focus, that Andres will wake up from surgery with a total resolution of his headaches, that this surgery will accomplish what is necessary to allow him a pain-free life.

And I’ll close this with a last bit of what I’m trying to consider good news.  It is very difficult to find doctors who take Chiari malformations seriously.  We feel so very blessed that God put Dr. George in the location he did, which just happens to be only an hour away from us.  One thing Dr. George shared with us is that Andres has a minor scoliosis.  He pointed out at our last visit that it is nothing to worry about for now, but he was very closed-mouthed about it, like he didn’t want to get sidetracked, but that it isn’t exactly negligible either.  I brought it up again today to ask if we should have him evaluated and followed by an orthopedist.  He said, “I’ll follow him for that.”  What that led to was him explaining to us that he is planning on following Andres for a very long time.  He will have this surgery, and then Dr. George will continue to be managing his care for many years is the way he put it. 

That is good news, isn’t it?

I mean, he has the highest level of skill and expertise we could ask for in the area of Chiari, so it’s a good thing that he’ll be the first to know if Andres starts showing any signs of a continuing problem or a complication.

But I was kind of hoping a little surgery would fix this thing and then we could put it all behind us.  I guess not. 

You know, if it weren’t for Noah, this would truly devastate me.  To think as far as we  knew Andres was perfectly healthy one day except for some weird headaches, and then come to find out that not only does he need brain surgery, but his future health is in question and he’ll need to be monitored for I guess the rest of his life, talk about getting the rug pulled out from under you!

But since Noah, we’ve been living without that rug anyway, knowing how unpredictable life can be, realizing what it’s like to live in God’s plans for us even when they are not the plans we had drawn up ourselves, and clinging joyfully to our Heavenly Father’s hand as he throws open the door to show us what our life has become, so much more beautiful than we had ever imagined.  We seem to have come through Door 1 only to realize there is a Door 2 after Door 1.  We’re stuck in the hall right now, not sure where God is taking us, but trusting in His leading.

Please join us in praying for Andres’ headaches, that they would relent in these last two weeks before surgery (Wow, surgery is two weeks from tomorrow) and would completely resolve after surgery.

Blessings,

Alyson

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6 thoughts on “Chiari 1 Malformation – On the Road to Decompression Surgery for Andres”

  1. Daughter, I’d like to share this post with my friends and enlist their prayers. May I?

    I’m so glad you have this avenue of sharing and expressing yourself. Therapeutic, methinks.

    1. Thanks, Melinda. Dr. George has told Andres in front of us on more than one occasion that he doesn’t like adults, but he loves kids. I’m not too crazy about that approach, but when I told Dr. George I’m planning to travel out of state 16 days post Andres’ surgery and did he think Andres would be up and around and feeling better by then, he came over and patted my knee and very compassionately said, “Momma should be fine to travel two weeks after surgery.” So he at least has some compassion for us adults. Andres will be staying home with my husband and the rest of the family (minus the two kids I’m taking with me on my trip), but if he would still be feeling poorly, I’d have a real hard time leaving him, ya know? Anyway, I know there’s no way to tell how it’s going to go post-op, but it sounds like he SHOULD be doing sufficiently better two weeks out.

      Hope you’re week is looking up.
      Blessings,
      Alyson

  2. I’m having a hard time leaving a comment for some reason. Let’s try this again. Sorry if you get it multiple times!! ….. I am considering Dr. George for a second opinon for my son who also suffers from Chiari Malformation. I’d love to ask you some questions. Can I email you? Please email me at tnajk @ cox. net (Spaces removed of course) Thanks

    1. I think second opinions are a really good idea, especially with something as controversial as Chiari. I’ve sent you an email and will be happy to help if I can.

      Blesssings,
      Alyson

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