Tag Archives: syrinx

Andres Update – Chiari 1 Malformation

Okay, as of today, it’s officially a Chiari 1.5 malformation.  Apparently that means it’s 1 . . . and then some.  I’m just going to cut and paste the letter I sent out to family today with a few minor additions:

Yes, another update.

Today was Andres’ much-awaited appointment with the neurosurgeon. We met with Dr. Timothy George this morning at Dell Children’s Hospital. Dr. George spent well over an hour talking with and assessing Andres, reviewing the MRIs in minute detail with Andrew, Andres and myself, and explaining the surgery he feels is appropriate for Andres. He showed us on the MRIs where the defect in Andres’ brain is, the bony structures which have contributed to it, the syrinx in the C-spine, the bones, the fatty layer beneath the skin, the marrow, the different regions of Andres’ brain (all normal except the cerebellum), and the totally normal lower spine (praise God)!!!! He must have spent 30 minutes alone showing us and explaining the MRIs.
 
So, yes, it looks like Andres will be having surgery, probably sometime this summer or early fall. He will have a CT scan which will show Dr. George whether Andres needs to have his spine stabilized as well as have the Chiari decompression surgery (surgery on the skull to enlarge it which will lead to more space and less pressure for Andres’ brain). The hope is that the surgery will cause the syrinx to resolve, since it is the presence of the Chiari that caused the syrinx in the first place. Dr. George says this is a relatively low-risk surgery, since the focus will be on the bones of the skull versus the brain itself. He expects Andres will be in the hospital 3-4 days and the surgery will be about one hour.
 
We did have lots of good news today, the best being that we have found a neurosurgeon who happens to have been researching Chiari for 20+ years (thank you, Lord, for putting him at Dell Children’s Hospital and having several people in my sphere of influence drop his name). Also, Dr. George feels that Andres does have a symptomatic Chiari 1.5 malformation. Now, I had never heard of a 1.5, it’s kind of an informal step up from a Chiari 1, and it has to do with the fact that Andres’ Chiari is large and extends past a certain point and is symptomatic (I think). He feels that with intervention now, Andres will have NO limitations (other than playing football and boxing, which Dr. George says he recommends avoiding for ALL children :). Andres also passed the neurological exam, so we are still certain no neurological damage has occurred.
 
Next step? CT scan and then a neuropsychiatric evaluation to extensively assess any processing, memory or learning difficulties and also to give us a baseline for pre-surgery. I visited with a physical therapist a couple weeks ago who recommended this step, and Dr. George agreed it was appropriate. The results of this will not only help us understand some of the possible effects of the Chiari, but it will also help me homeschool him more compassionately and effectively. He has always been a good student, but I suspect he has some memory and processing issues that will show up on testing.  Dr. George said he could not for sure say that these are related to the Chiari, but they may be, and they may improve after surgery . . . or they may not.  We agreed if they resolve, he gets full credit, if they don’t, he had nothing to do with it.  🙂   Yes, the good doctor has a great sense of humor but was also appropriately serious when we started talking about surgery.
 
Andrew took off the day from work, so he was able to attend the appointment with us. We are in agreement that Dr. George is the right surgeon for Andres. What a priviledge to be able to walk through this day together.
 
We thank each and every one of you for walking alongside us, and we appreciate your prayers. We will keep you updated. Andres’ next appointment is in late July, and they would like us to wait until then to get the CT scan so it is up to date. It is quite possible that the July appointment will be considered his pre-op appointment.
 
Blessings,
Alyson
 

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.

 

Andres – Chiari 1 Malformation Update

So I guess I should start changing these to Chiari 1 malformation, syrinx update.

Tomorrow is the big appointment with the neurologist at Dell Children’s Hospital in Austin.  I’m so afraid this one will talk me into thinking everything is a-ok with Andres without doing any more testing.  It’s hard when what you want to hear is that no more testing is needed, yet something in you tells you it’s not true.  I want some cold hard facts, imaging, nerve conduction studies, something that will prove Andres is not having any neurological damage due to his condition.   I just don’t think we ought to base an 8-year-old’s medical treatment off of what he says his symptoms are, even if the neurologic exam is negative.  The cold hard facts are he has blurry vision, daily headaches, and occasional numbness and tingling in his hands.  It sounds pretty suspicious to me.

So, we’ll see where we go from here.  The pediatric neurosurgeon here has got a great reputation and has had experience with Chiari, but it’s really difficult to get a referral is what I hear.   The last thing I want is for Andres to have to have brain and spinal cord surgery, but to do nothing if that is what he truly needs would be worse.

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.