from joyce----

[Guest guest]

hi this joyce,

i saw some posts about nose bleeds, thought id mention that two of my

daughters have had nose bleeds. my older daughter who is 26 now, had them when

she was about 6 or 7 often, but dosent have them anymore, i havee no idea why

they stoped, she has 9mm chiari and retroflexed odontoid. she is

not very symptomatic, she has about two bad chiari headaches a yr and is in

bed for few days with them. she had genereal anstesia for child birth so she

would be safer after the problems her sister jenny had and that was recomended

by a neurosurgoen she saw.

my 15 yr old would wake up to them sometimes and filnally the dr burned a few

veins and she hasnt had anymore, she has chiari 9mm and some heart issues still

being checked.

my oldest daughter jennifer whom we lost to complication of chiari never had

bloody nose, but her 7 yr old daughter has them constantly, and often when she

wakes up to them like my other daughter, i dont know if she has chiari, she

dosent show symptoms i dont think, she does complain of headachs or neck pain

sometimes but not too often and possible we should get her checked at some

point.

somewhere last yr i started to have bloody nose one day and had them about two

times week for about eight months or so then had a cardiac ablation and i havent

had any since, could be a just a coinsoidense?

but next day after the ablation i had auroa in my vision and headache after

and have it about few times every two weeks. it looks like zebra up and down

black and white clear in center, it starts out on one side and goes in my whole

vision but i can manage to see through it but it looks bright sorta and it sees

like i have a white spot or plain bright spot and cant see that area. i also

feel sorta strange during some of them.

i was suposse to be reffered to a neruoligist but im sure my insurance is

giving problems, im going to see what it is. they really get me irritated!

nothing is happening bad from it so maybe it wil just stop soon and nothing

needs to be done, hopeing anyway!

hard to know what all is chiari realated, but haveing my heart beat calmly is

nice to feel.

one thing, my 15 yr old, she has tmj i took her case to the med-i-cal state

board becaue they werent going to help because they said tmj isnt covered, i

sent a letter to about three departments telling them if she has any probalems,

that i am documenting every call and denial, and now recently she has a

reffereal to ucsf for oralfacial pain. i dont know what they do there, but at

leasts she can be checked because her jaw gets stuck sometimes.

i used my own letters from my visit to maryland regarding possible connective

tissure problems and some reports from ny about our family chiari and other

information and gave it to the judge.

thanks,

joyce