Re: empty sella syndrome / body temp regulation ect ( old recycled post )

[Guest guest]

O.K., I have the empty sella and the hypothyroidism (which through the years

continues to get worse, they keep raising my Synthroid levels, saying

someone my age should never be on this much Synthroid, but I'm sick as a dog

if my levels aren't this high.). I see a new Endocrinologist next week. Do I

tell him about the empty sella? Will he understand? Will it make a

difference in treatment? or is it my nsg who should be treating the whole

empty sella issue.

I'm so confused! I would love to lose this last 30 lbs, (which doesn't

come off no matter how active I am) and feel like my temperature is

regulated. I'm ALWAYS the one who's freezing, then have days in a row where

I run a low grade fever! But, which doctor should be dealing with this and

who will figure out if my pituitary is gone or just hiding?

Much love,

Traci ACM1, no surgery, hypothyroidism

mom of Andre (15 yrs.), ACM1, cyst on brainstem, scoliosis

From: wyvernnc@...

To: chiari

Subject: empty sella syndrome / body temp regulation ect ( old

recycled post )

Date: Sat, 18 Aug 2001 12:27:58 EDT

The following is an old post regarding empty sella and acm ties , from a

list

member no longer active with us ...but an R N with great acm study and

understanding . I thought about paraphrasing what she said ...but she said

it

soo well , that I hope she would /will understand my reposting it now . If

you need /want the source for validation , write me offlist please . I'd

saved this post because it brought me clarification in understanding an area

I could find little in the acm literature about ...but discussion with the

neurosurgeons at ASAP has validated that her observations are frequently

found accurate too .

if this fits at all from the link Kathleen sent when you read it through

...do

take info to your doctor to discuss please . (Kathleen posted

http://thalamus.wustl.edu/course/hypoANS.html) ..

the former list member wrote

" Chiari malformation causes an increase of the pressure of the CSF trapped

both above and below the level of the malformation. We already know this

CSF builds in pressure to force its way past the chiari.

This increase in pressure can also have a backwash effect. The CSF can

invade the sella turica (the bony cup where the usually plump raspberry

like pituitary gland sits) and flatten the pituitary gland so it looks

like a pancake or even sort of float it upwards and out of the

sella...making the sella look empty on a scan. It is a luck of the draw

kind of thing that you get a good clear scan that shows the sella and the

pituitary gland it depends on the slices of your MRI.

It is important to note whether the sella is truly empty (and the pituitary

gland has shrivelled up or atrophied) or if the gland is displaced by the

invading CSF. I have seen a few *empty Sellas* with chiari that went back

to almost normal after decompression.

Your NSG should be able to tell you by looking at all the scans what

effect, if any, this empty sella finding has on you, and whether your gland

is just flattened out or displaced.

It definetly can cause symptoms as has been mentioned, frontal headaches

and visual disturbances being most common.

I sit at my computer surrounded by blow-ups of various MRIs on my wall, I

can see a half dozen empty sellas in these scans, maybe about half of these

are truly empty, the others are merely displaced.

MY note now ...I've been told , that seeing an endocrinologist is the best

path to get impacts evaluated too ....she also wrote that the incidence of

hypothyroidism and other hormonal ballances are also found disturbed in some

of us with this pattern of csf presure ect in other posts . I plan to dig

out

another article later this am to post , called stiff woman syndrome ....to

no

great suprise of the RN and I , when I first posted this one , several folks

were then able to get some help who were impacted , by chasing the clues it

contains ..but its technical stuff ...best taken to your doctor to discuss

...dont assume anything ...it won't be the answer for everyone !

sarah in paradise

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[Guest guest]

Yes

The material you posted was the first reference I remember reading in

this list, regarding empty sella syndrome. She got me thinking very

hard.

I've always wondered why, with 18 mm tonsil descent, I never developed

a syrinx. So with many others as well. But I do have partially empty

Sella turcica. And I did have premature ovarian failure at 31, which

neurologists think is linked to this sella syndrome.

After listening to Dr Steineke of UCLA on Sat at the ACM conference,

describe the various structural problems in the posterior fossa that

reduced its size in different ways(leading to different surgical

techniques per Chiari case) I came up with another theory.

Now call me wild and crazy, but what if the different structural

problems he described, cause the CSF to pulse up into the brain more

in some people, and down into the spinal cord more in others? Like

if the people with the more sharply angled tentorium are firehosing

their pituitary gland while the folks with the flattened floor of

posterior fossa are more likely to firehose their spinal cord? (Did I

ever tell you that I map flow of irrigation waters for a living???)

I noticed that when I described Chiari headaches - valsalval manuever

headaches, there were only a few people who shared the same 30 second

nightmare pain- close to passing out...others described it as an ache

that went on for hours, or an ice pick behind the eye, which is wildly

different from what I felt. My skull burst open, there was a universe

of red pain and nothing but that, and then it receded in waves and

there was a lightheaded skull there again. Something slapped me

upside the head but spared my spinal cord?

So now I should just write to Dr Steineke and ask him to please

correlate empty sella syndrome with 30 second killer headaches, with

their ongoing study of posterior fossa malformation type? (in his

spare time?)

Joanne

> The following is an old post regarding empty sella and acm ties ,

from a list

> member no longer active with us ...but an R N with great acm study

and

> understanding . I thought about paraphrasing what she said ...but

she said it

> soo well , that I hope she would /will understand my reposting it

now . If

> you need /want the source for validation , write me offlist please .

I'd

> saved this post because it brought me clarification in understanding

an area

> I could find little in the acm literature about ...but discussion

with the

> neurosurgeons at ASAP has validated that her observations are

frequently

> found accurate too .

>

> if this fits at all from the link Kathleen sent when you read it

through ..do

> take info to your doctor to discuss please . (Kathleen posted

> http://thalamus.wustl.edu/course/hypoANS.html) ..

>

> the former list member wrote

>

> " Chiari malformation causes an increase of the pressure of the CSF

trapped

> both above and below the level of the malformation. We already know

this

> CSF builds in pressure to force its way past the chiari.

>

> This increase in pressure can also have a backwash effect. The CSF

can

> invade the sella turica (the bony cup where the usually plump

raspberry

> like pituitary gland sits) and flatten the pituitary gland so it

looks

> like a pancake or even sort of float it upwards and out of the

> sella...making the sella look empty on a scan. It is a luck of the

draw

> kind of thing that you get a good clear scan that shows the sella

and the

> pituitary gland it depends on the slices of your MRI.

>

> It is important to note whether the sella is truly empty (and the

pituitary

> gland has shrivelled up or atrophied) or if the gland is displaced

by the

> invading CSF. I have seen a few *empty Sellas* with chiari that

went back

> to almost normal after decompression.

>

> Your NSG should be able to tell you by looking at all the scans what

> effect, if any, this empty sella finding has on you, and whether

your gland

> is just flattened out or displaced.

>

> It definetly can cause symptoms as has been mentioned, frontal

headaches

> and visual disturbances being most common.

>

> I sit at my computer surrounded by blow-ups of various MRIs on my

wall, I

> can see a half dozen empty sellas in these scans, maybe about half

of these

> are truly empty, the others are merely displaced.

>

> MY note now ...I've been told , that seeing an endocrinologist is

the best

> path to get impacts evaluated too ....she also wrote that the

incidence of

> hypothyroidism and other hormonal ballances are also found disturbed

in some

> of us with this pattern of csf presure ect in other posts . I plan

to dig out

> another article later this am to post , called stiff woman syndrome

.....to no

> great suprise of the RN and I , when I first posted this one ,

several folks

> were then able to get some help who were impacted , by chasing the

clues it

> contains ..but its technical stuff ...best taken to your doctor to

discuss

> ..dont assume anything ...it won't be the answer for everyone !

>

> sarah in paradise