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
 
Advertisements

4 thoughts on “Andres Update – Chiari 1 Malformation”

  1. Hi Alyson,

    My name is Pete Dal Bello and I am the founder and president of the International Chiari Association (ICA). I also have Chiari. The ICA is a nonprofit organization dedicated to helping those with Chiari and the people that care about them.

    On Thursday, we posted your blog at both the ICA Newsroom (on our web site) and on our Facebook page. It is people like Andres, who battle Chiari on a daily basis, that inspires both myself and my team (24 people – board members and advisors combined).

    The ICA just added a link to this blog on the links page of our web site ( http://www.chiariassociation.org/resource-center/personal-websites-blogs-facebook-pages ). We would be honored if you add our site – International Chiari Association (ICA) – to your links section. Our web site address is http://www.ChiariAssociation.org

    We are the only Chiari nonprofit to provide news and information from Monday through Friday.

    We have already brought many exciting new things to the Chiari World. Among them are the following: a web site that is updated from Monday through Friday; a web site that translates into other languages; mascots; the International Chiari Association Network (ICAN)(becoming the first Chiari nonprofit to develop its own network on YouTube); an updated Doctor Directory; a list of Medical Centers. We look forward to unveiling many more new things to help Chiarians, both in the United States and abroad.

    I invite you to visit our web site (www.ChiariAssociation.org), “Like” us on Facebook (www.facebook.com/chiariassociation) and subscribe to the International Chiari Association Network (ICAN)(www.youtube.com/user/ChiariAssn?feature=mhsn#p/p). We have big plans for ICAN, which features many Chiari-related videos.

    The ICA will continue to bring exciting new things to the Chiari World in an effort to create a brighter future for Chiarians everywhere. Thanks for your time and I look forward to hearing from you.

    All the best,
    Pete Dal Bello
    Founder/President
    International Chiari Association (ICA)

    **********************************************
    Pete Dal Bello
    Founder/President
    International Chiari Association (ICA)
    27 W. Anapamu St., #340
    Santa Barbara, CA 93101 USA

    ICA Web Site
    http://www.ChiariAssociation.org

    ICA on Facebook (“Like” Us)
    http://www.facebook.com/chiariassociation

    International Chiari Association Network (ICAN) (Subscribe for FREE)
    http://www.youtube.com/user/ChiariAssn?feature=mhsn#p/p

    Phone: (805) 570-0-HUG (570-0484)
    Fax: (815) 301-6541
    E-mail: pete@ChiariAssociation.org
    LinkedIn: http://www.linkedin.com/pub/pete-dal-bello/3b/aa3/a9a

    1. Thanks, Pete. I’ve used some of your resources and really appreciate the work you are doing. I’ll be in touch. I hope you don’t mind if I post your comment. It will be helpful to the people who wind up here while searching for Chiari information.

      Blessings,
      Alyson

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s