[CCI] re: sinus/drippy nose

[Guest guest]

Hi everyone. I'm the " someone " ?Debbie emailed... I haven't posted here in a

very long time.

I have had a long battle with a one-sided?leaky nose, and it's not an infection.

Every time I eat, a clear fluid runs out of my right nostril or down my throat.

I have to use several napkins to get through a meal. After the fluid made a

characteristic sign on paper, an ENT?concluded it?was cerebrospinal fluid

(CSF0)?and said I have a chronic leak.?

MRIs and CT scans reveal a very thin cribriform plate with irregular edges

behind my right sphenoid sinus, with damage to the sphenoid and ethmoid sinuses

on that side.?It's most likely from my?being a fragile?EDSer. Sports-related

accidents in my youth?broke?my nose three times, and a team of doctors broke it

a fourth time to make structural repairs. I have had my CSF leak since late

adolescence, and I am in my mid-fifties now. So far so good.

My father had a similar chronic CSF leak. He did well for many years because the

leak site retained a positive pressure, which kept out pathogens.?At age 68, he

finally died from fungal meningitis after having a?medical procedure that

temporarily changed his CSF pressure. I am hoping to avoid a similar outcome.

I think?some Chiari docs have been collecting info on patients' reports of

chronically drippy noses, but I?don't know if they've made?a solid?connection

with the fragility problems brought about by collagen defects, or if they are

focusing more on the possibility of increased sinus infections in Chiarians in

general. My bet would be on the HDCT factor.

blessings to all,

~Sandy (the one in Oregon/California)

missing sinuses

Posted by: " Debra y " debsvd74@...

Sun Jan?25,?2009 7:10?pm (PST)

And for Guy and , I e-mailed someone earlier that has a similar situation.

If she hasn't e-mailed you privately yet, she may post a somewhat different

scenario. Hope someone hears from her soon.

Debbie

[Guest guest]

First of all, I'd like to thank and Sandy for posting on CCI. For

those that don't know these ladies, they are very knowledgeable women, and

I'm thrilled to have them back.

As for sinus infections. I had a constant infection for years prior to my

first decompression. Shortly after my decompression, my infections stopped

and I haven't had one in 18 years. When I asked my first neurosurgeon, he

said it had nothing to do with chiari. I'll have to ask the experts their

opinion.

Kathleen

[Guest guest]

Hi To All,

And I'm the Debbie was referring to-- about another drippy nose story that

I posted. So now we know

that thanks to Sandy getting her drippy nose fluid tested that it was cerebral

spinal fluid that started dripping

every time we sat down to eat. I know Sandy said she had her nose broken a few

times, but I've never had

any accidents that broke my nose. Sorry about your Dad, Sandy.

Just when you think after decompression in '05 ac1 (14 mm), you now have

completed your Chiari puzzle,

another piece suddenly appears! I only wish I had the knowledge back then that

so many of you have before

your decompressions. Mine was emergency--taken from work by ambulance & what a

frustrating ride it's

been ever since. At least we're helping others with all the symptomatic symptoms

we had all our lives, but

did not even know. All the more reason it's so frustrating to all Chiari People

when so many medical specialists

have not even heard of this genetic disease.

Thoughts & Prayers To All,

http://windowslive.com/explore?ocid=TXT_TAGLM_WL_t2_allup_explore_012009