Moderate effacement of csf

[dawnnm16]

I have been trying to learn as much as possible since my daughter was diagnosed but can someone please tell me what this means------> The cerebellar tonsils are pointed in configuration with moderate effacement of CSF spaces at the craniocervical junction. .......I know her chiari is 9mm. I was wondering what it means that they said moderate effacement of csf spaces ?  We are scheduling an appointment with a specialist ....thank you

[selmaS]

  Hi...I have had leg and arm tremors......no seizures....and I know quite a few members DX'd with seizures both b4 and posts op.....so it is possible the seizures are related to the Chiari.....best thing is to have more testing done to see what other possible related conditions your Child may have.....

We all have to remember that Chiari can affect any part of us as it affects the spinal cord and brain stem where all signals for how our body works and functions pass thru....

[dawnnm16]

Hi Selma do you know if seizures and leg tremors could be related ? I was asking on the epilepsy post but no one is on that group to answer... Autumn is going to be seen by a neurologist because she has been having blank stares and we noticed that since she was born she has always has leg tremors...

[selmaS]

  Sorry I missed your post....but see you got some good info....

Do keep us posted and if surgery is scheduled post the date on the list your surgery date thread and a prayer thread will be posted for your daughter.

[dawnnm16]

She has had a swallow study she isnt aspirating but she does have delayed swallowing with pooling and she needs thickened formula,,, She also only moves her tongue to the left and wont move it to the right..We have an appointment with a chiari specialist but it is a far ride ...I am trying to find one closer but we aren't having luck!! thank you

[Lottida]

OMG I am so glad that Elisaandbucky was able to give you HOPE from first hand experience.  I do not have children (not by choice), but it breaks my heart that you are having to deal with these issues.  Has she had a swallow study done to check for aspiration??  Curious if the dysphagia is from muscle weakness or neurological deficits?  I know your daughter has a Chiari so please try your best to get her to a Chiari specialist.........this way she can be monitored appropriately & if some treatment is needed you definitely want someone who is specialized in Chiari.   Please keep us posted & know that you can always find support on this forum............I will keep Autumn in my prayers!!! <3

[dawnnm16]

hello,
Thank you for your time. Autumn doesn't really speak yet she does say mama, dada and bah but nothing else.. Did your child need surgery for the chiari when he was little? My Autumn is on a 6 month physical level at this time but she did just start sitting and rolling!! Was your son delayed at all ? Was it the chiari? thank you for writing me

[Elisaandbucky]

Hello Dawn(?),
I read Lottida's reply to your post above and can not really add anything as far as medical description. What struck me about your daughter was her swallowing difficulties. Oh, how I struggled with my infant son 18 years ago. It can be very difficult to love a baby with eating/swallowing challenges. I am sending you good wishes. However, guess what! I can tell you ( to hopefully comfort you a bit when you think about your daughter's future) that my son eats like a machine now. The only thing I have to keep constant watch on is the size of the bites of food he attempts to swallow. It can get scary sometimes. My thoughts are to say that you are doing the best thing in seeking the help of a specialist. Chiari malformation is not very well understood by the nonspecialist neurological community. Trust your motherly need for more answers. Five hours is far to drive with a young child - that is a big challenge. But, by all means, follow your heart. Chiari has so many symptoms that affect so many functions of the body. Can your daughter say that her throat hurts when she swallows?

[dawnnm16]

My daughter is 15 months. She is delayed in swallowing and was diagnosed with dysphagia ... She also has hydrocephalus with a shunt. Our developmental Dr. thinks the chiari is the reason she has swallowing issues but her ns told us not to worry about the chiari... We want to take her to Pittsburgh Children's Hospital for a second opinion, it's about 5 hrs. from us though... She is also delayed in her milestones . At 13 months she started to roll and sit, she still can not sit up on her own or go into a laying position from sitting... She is on a six month development level...

[Lottida]

Moderate effacement of CSF spaces means the cerebellar tonsils are starting to take up the space where Cerebral Spinal Fluid (CSF) should be.   Effacement is common with Chiari malformations & CSF flow problems often occur.   The area where the head connects to the spine is the craniocervical junction & is where Chiari is located.  The Cerebellar tonsils being pointed in configuration is good because that means the radiologist could actually see the tip of each tonsil.  Sometimes the Cerebellar tonsils can get pushed on by the spine & cause them to become flat or disfigured at the tip.  I'm no doctor but that is my understanding of those medical terms.........I am a registered nurse that just so happened to have a Chiari!!

How old is your daughter??  Is she symptomatic??