Daughter with Chiari having numbness

Hi my daughter has spina bifida with chiari malformation.  Her spina bifida isn't that severe, she can walk.  Latley she has been having problems with her arms going numb and her getting dizzy.  Today at the store she started looking really weird and said she felt tingly and that she was about to pass out.  Could this be from the chiari, could this be a normal thing?  Can't go to the doc right now because they just took away her medicaid because we make too much money. Also can a chiari malformation patient's heart stop beating for no apparent reason? Thanks

[selmaS]

Hi and welcome to the chiari forum.

Was ur DD's SB dx'd at birth?.....

It is possible that she may have a Autonomic Dysfunction condition that may affect her heart...there are a few other chiari related conditions that may be to blame.....there is even a Ehlers-Danlos Syndrome type that can also have the heart involved as well.

I don't want to assume, but were u told that she has tethered cord as well? The passing out can be so many different things that ultimately r related to chiari.

There r many undocumented symptoms....it is diff to say for sure...but, I would venture to say somehow they r all involved.

May I ask how long since ur DD got her dx?

"selma"

[cynsleigh]

Hi She was diagnoised with sb at birth but didn't have problems from Chiari until about 9 years old.  A year later she had her dx.  She is now 15 so it's been about 5 years. I am now freaking out thinking her heart could stop beating.  She has complained about her heart hurting but I always thought it was just heartburn.  She hasn't had that problem in awhile.  The last time we saw her neosurgeon he said she did not have tethered cord. also said her chiari looks fine.  I can not lose this girl my life will end if I do.  I will be calling her doc tomorrow.  I just don't know what to do about insurance because her medicaid has recenlty been cut and I can't seem to find insurance anywhere for her, because of her preexsisiting condition.

[selmaS]

Hi.,..many chiarians do have thyroid issues as well as acid reflux...but it is best to have her checked...I was having heart palps and was told everything was ok.....

I just signed up for a new insurance policy being offered in PA...for adults with pre-existing conditions...mayb there is something in Florida...check with ur state rep...they may be able to help u...or able to help her get the care she needss.

"selma"