chiari -symptoms- EDS

[Guest guest]

HI,

 

Lately two of my seven kids are haveing issues and i have been writing about

some of them. My daughter now 23 who has a 8-9 chiari and i also dont think the

lengeth is the factor but she also has a PFO and had major issue with anexoria

six yrs ago and still strugglesl but she has been in college and taken a lot of

medical classes like nutrition, so she knows what nutrientents she needs and

understands about electrolites.

 

 we have been told her PFO opens and closes so her pediatric cardilogist told me

he didnt measure it. I read if it is 1.5cm it needs to be closed, and also if it

has right to left flow is not a good thing and hers has right to left and left

to right flow.

so i phoned this dr and that is when he said he didn measure it and when i asked

why and questioned him more he ended up hanging up on me.

I wrote him a letter telling him that was rude and not any way to treat a

patient then told him if it is our ins creating his actions i could make a

problem for him for not giveing proper care due to the ins.

i never heard bac and didnt think i would. the adult cardilogist blew her off

also saying her dizzyness and faintiing sensations and low blood pressure are

not cardiac related.

she is here today complaing of it again and she is going through the stuff i go

through with trying to get records, but she is at the same time irritable and

yelling at me and acts this way a lot and then can turn around and change to be

nicer.

I really dont know what is the reason or where to begin. she is scheduledf or an

mri next tues. and i asked for them to do spine mri but the nurse said to wair

till the mri come bac because it will be another request for refferal. i wrote

her a letter annd said how doumb this is because syrinx signals have been seen

and it is a waste of time and probally the ins money to go bac when all they

need to do is take it while she is there.

gosh im going insane, now also my son 25 who has a history of mind confussion

and wobble walking which the first time it occurred they said are migraine.

he has chiari 4mm and his are seen wraped around the brainstem and a ucla dr

stated he didnt think he sees a chiari, but he is prone to anyersyms. his mri

and mra showed an atunnation (thinning) area in veins in his head and he has a

left-side  carotid-cavernous fistula.

anythoughts?

joyce ca