17 year old daughter w 1cm

[RonFAZ]

My daughter just diagnosed. She has constant headaches.  Tingling hands and legs when she works out. Choking and gagging but we thought it was acid reflux.  Our neurologists just recommended that we see a surgeon.

How serious is this? Can it grow? What are long term effects?  Thanks Ron

[selmaS]

  Here is a link to our list....keep in mind not all on the list may be true Chiari specialists but they are the names of  Drs that a member has been to, treated by and liked, so it is not a referral nor an endorsement for those on the list...you also will want to research each and it is possible that you will not like them for what ever reason...so you may end up having to travel.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

There were 2 in AZ.....hope it is helpful.

[RonFAZ]

I would love a list of specialists in the Phoenix area. Thank you!!

[selmaS]

Hi and welcome to the Chiari forum.

As the above poster mentioned it should be taken seriously.....

GI issues are typical with Chiari...but it can also be indicating other related conditions which affect the digestive system like Ehlers-Danlos....so, do more testing and find a true Chiari specialist....

As the above poster also indicated that breathing and swallowing can also be affected....

Once we are DX'd with Chiari there are activities we are told to avoid as they will trigger symptoms...so anything that raises the BP such as straining....tell her to listen to her body and not continue to do things that cause symptoms to flare.

We do have a list of Chiari Drs for members to use to research Drs as it is not a referral nor an endorsement it is meant as a tool / a starting place....

Know you are not alone and we are here to help anyway we can.

[Mel5056]

Hi Ron, I am not trying to scare you but yes this is to be taken seriously.  The brain stem is our control panel in our brain for some involuntary functions...breathing and swallowing being two examples.  Central sleep apnea has been found in Chiari patients and I think that is due to brain stem compression.  But please please make sure you find a Chiari expert not just a neurosurgeon that says they know what it is.  You want someone that does a lot of the surgeries and is willing to rule out the other things that Chiari can bring.  Do your research a lot so you and your wife know what is being said and more importantly when a medical professional doesn't know what they are talking about.  And believe me when it comes to Chiari a lot claim to know but are absolutely clueless.  You are going to learn so much more than you ever imagined about this.  It's the only way to get the correct care for your daughter.  Selma will post about this soon and explained so much.  I am 8 months post op from surgery and back to work.