Andres – Chiari 1 Malformation, Syrinx Update

So, when you’re worried that your son’s condition is going to be blown off by the doctors, and a new doctor comes through the door reading his chart and MRI reports and then looks at you with a bewildered look on his face and says, “Has Neurosurgery seen him yet?”,  you just gotta breathe a huge sigh of relief  and say, “Thank you Jesus.”  (Which, by the way is exactly what I said when Dr. Rearden at Dell’s Children Hospital said, “I really think we need to get neurosurgery in on this.”)

My prayer was this:

“I’m praying I will stand my ground and the neurologist will see everything he needs to to accurately assess Andres’ situation, and I’m praying for aggressive testing so that of everything we can be sure.”

Well, the Lord took care of the first part of this because I think the doctor had already started to make up his mind just based on the MRI reports and the paperwork I had filled out (complete with a list of all Andres’ symptoms.)  I definitely think the Lord gave the neurologist supernatural insight to look right into the heart of the matter with Andres.  Andres did go on to have a completely normal neurological exam, which is great, and some neurologists wouldn’t pass him on to neurosurgery based on that alone.

And we’ll have to see about the aggressive testing.  I’m all for aggressive testing, conservative treatment.  Let’s just get a good picture of exactly what’s going on with Andres, know what I mean?   The neurologist was telling me about a study the neurosurgeon may order which will involve injecting dye into the cerebrospinal fluid and doing a flow study.  He was most concerned that Andres’ level of activity has decreased because so often running and jumping brings on the headaches.  He thinks a condition that is limiting a little boy’s lifestyle probably ought to be taken very seriously.  Yay!

So, it will take about a month for neurosurgery to be ready to see him, and because Andres’ condition seems to be a very slowly progressing one, this timeframe is fine for us.  I was so impressed that Dr. Rearden didn’t just tell us his nurse would get us set up with neurosurgery, but he actually called neurosurgery himself on the phone just outside the exam room.  Then he came back to tell us it would be about a month, and he wants us to call him and let him know what the neurosurgeon has to say.  (I’m sure neurosurgery will send him a report, but he stressed he wants us to call him.)  He’s not sure whether we’ll need to follow up with him on a regular basis or if neurosurgery is going to want them to be our followup, but he said we can call him any time, and we should call him if we have any questions or worries about Andres.  This was very similar to the wonderful treatment we got from Dr. Parnes at Texas Children’s Hospital.  And I am so very thankful to Dr. Parnes that he asked us to go ahead and get the C-spine MRI which revealed the large syrinx.  If we hadn’t done that, we probably would have completely dismissed the Chiari for now, and I am sure that would have been the wrong move.

You know, I feel totally ill-equipped to be an advocate for my children’s medical care.  Nobody told me that was part of my job description.  As scared as I am that I may not do a good enough job when there is SO much at stake, I know that God is sovereign, and there really are some awesome professionals in the medical field who make my job easier.

 

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2 thoughts on “Andres – Chiari 1 Malformation, Syrinx Update”

  1. Alyson,

    You and your family are in our thoughts and prayers. From what I have read here you have a tremendous ability to advocate for your children and their health issues. I love your blog and I would like to link to it on mine. It is definitely going to take me some time to go through all of the great developmental and educational materials that you have set out. Please know that you are not alone on your Chiari, EDS and tethered cord journey.

    Stephanie

    1. Thanks, Stephanie. Your blog is such a wealth of information on dealing with symptoms and doctors. This Chiari, syrinx thing is made so difficult by the fact some doctors seem to completely blow it off while others seem to treat it very aggressively (maybe too aggressively?). Having a child born with Down syndrome really prepared me for this journey with Chiari. It taught me that if you want to talk to an expert on one of these conditions, talk to the parents. I get more useful information from one itsy bitsy email or blog post from another parent than I do from a 30-minute visit with any doctor. Parents are the ones who will tell you the right questions to ask, the right tests to order, the symptoms to watch for, and the procedures that help. Thank you so much for sharing your journey on your blog and equipping the rest of us for our journeys as well.

      And now some good news – I just received the MRI results of Andres’ lower spine, and he does not have a tethered cord – it all looks good. Hallelujah! So, I think we’re just dealing with the Chiari and the syrinx and not a syndrome. A little calm in the midst of the storm. I’d love it if you link my blog on yours. I need to look into adding a blog roll on mine, and I’ll be delighted to do the same with yours.

      Keep writing . . . and keep praying.

      Blessings,
      Alyson

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