Aa
A
A
Close
Avatar universal
Needing advice!
Hi, I'm the mother of a two year old little girl who was just diagnosed with Chiari 1 malformation. She isn't walking or talking yet and can only eat soft things without choking. She is also blind (optic nerve hypoplaysia). We just aren't sure if her delays are from her lack of vision or because of the Chiari 1. Any advice would be helpful. We don't want to put her through a surgery but want to do whatever would be best for her. I would really appreciate any responses, thanks!
Cancel
1 Answers
Page 1 of 1
620923 tn?1452919248

  Hi and welcome to the Chiari forum.

I am so sorry ur little one is having to deal with this condition....and u, as a mom, I can not imagine if my DD  was to have had this and at that age....I know this is not going to be an easy journey for u.

My suggestions would be find a pediatric Chiari specialist that will do testing to check her CSF to see if she has an obstruction, and then check for other related conditions and issues b4 u consider surgery, but with children there are a few things to be aware of...not many drs know how chiari can  affect us and  do not check for sleep apnea, and for a child her age this should be done asap if it hasn't already been done.

Next, u will want to know if she has tethered cord, as it can affect bowel and bladder issues, and legs....

a syrinx...this should be done with a MRI of the cervical, thoracic and lumbar spine....some Drs only check the cervical spine, a syrinx can form newhere in the spine.

The choking is a very Chiari thing and swallow studies do not provide insight as it is a neuro issue and not a physical one...I guess it rules that out...but other then that it does not show y we choke.

Surgery is not a cure but a means to restore CSF flow and slow progression, no one wants this surgery, but many that wait sometimes wind up with more issues or perm nerve damage as a result.

Find a dr well experienced with this, one that does research as well as surgery for chiari and chiari related issues only....

Know that u r not alone.....if we can answer ur questions we will, better still we will listen even if we can not.

((hugs )) to u and ur little one
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Comment
Post Comment
Your Answer
Avatar universal
Answer
Do you know how to answer? Tap here to leave your answer...
Answer
Answer
Post Answer
A
A
Recent Activity
317787 tn?1473362051
Blank
Dee1956 commented on Dee1956's status
12 hrs ago
317787 tn?1473362051
Blank
Dee1956 commented on Belle313's status
15 hrs ago
317787 tn?1473362051
Blank
Dee1956 CDC states 1 in 4 people ha... Comment
15 hrs ago
Top Neurology Answerers
620923 tn?1452919248
Blank
Allentown, PA
1306714 tn?1327260680
Blank
muskegon, MI
Avatar universal
Blank
TX
Avatar universal
Blank
979826 tn?1389039958
Blank
germantown, MD
Avatar universal
Blank
Chiari Malformation Community Resources