sore throat chiari--tonsilitis-neck pain

[Guest guest]

hi,

yesterday my now 24 yr old son who is told his chiari a 4mm and tonsils seen

wraped around the brainstem. of course they usually say no evidence chiari or

one did say chiari o and spina biffita ocultta. only no drs tell us this at all.

this is my son who at age 14 had headache for few hrs after playing football

with friends. i told him to lay down but he woke up crying with a severe

headache and numb mouth, then while i was on the phone with kaiser he began to

have ataxia, i think this is where you cant talk right. i took him in and he

could hardly walk and this occurred before i had ever heard of chiari. at kaiser

they gave him a medication saying if it worked he just had a migraine.

this lasted two hrs.

 three months after my son had that headache, we suddenly lost my oldest

daughter who had a seven month old baby.

 she had become symptomatic to chiari after she had a spinal for childbirth. she

suffered symptoms for seven months before she died suddenly in ER. we only knew

about her chiari for two months though.

but i put the headache and her death together and began to wonder about the rest

of the kids and had them all MRIs.

right away three were told they had chiari. so of course i thought this is the

end my kids are all going to be in serious trouble.

this is the beggining of all the chiari stuff.

anyway last night my son had the swollen sore throat that almost closes and they

have to give him steriods. they get him in imediately, they must have him listed

because they took him in then.

but... they tell us it is tonsilitis or they think mono. he dosent ever have a

fever or white pockets on his tonsils. his tonsils are so swollen his throat is

almost closed and his neck is swollen. he had a break in this for almost two yrs

untill yesterday.

the dr told us he would have high white count. but then as usuall they come in

quickly dont say anything and i have to say wait, what is wrong, then the dr

says his white count was a little high and leaves quickly.

 when i had tonsilitis i had high fevers and very ill, kellen just gets very

swollen tonsils and dosent feel sick in a way of an infection. this dosent make

any sense. can you have tonsilitis without feeling sick? or have white pockets

on tonsils?

few yrs ago he was constantly ahaving this and it got better after he was doing

some traction sitting up. although he has had a broken nose and unable to get it

fixed yet. he has nose breathing problems from this but my son in law had a

broken nose and said he never had symptoms like kellens with the swelling, only

he had sinus stuff as kellen does.

he was scheduled for nose surgery few times but had to cancel because of ins and

school each time.

now he has no ins but we are working on this mess, to get his nose fixed but i

dont think his tonsils are realated to that.

my other son has 9mm chiari and recently complains of more neck pain.

anyway im just concerned and do not know how to draw the line as to what is from

what,

my 28 yr old daughter is pregnant again and has 9mm chiair so of course i have

raised concern, but they know of the chiari and a neurosurgeon tells her ob to

do only c-section with generel anstesia.

my 21 yr old and 17 yr old are always so irritable, i think it is from the brain

squishing deal. i know its been discussed on here before.

anyway im seeing a neuro tomorrow with my 4m chiari and my hand is been numbish

or tingly and feels swollen and if i use it it brings on the symptoms. i also

have sceladurma and elhers danlos or so im told.

total bodyachyness comes from one of these.

i got this off my mind,

thanks,

joyce