[Elfsea] Arabella's Brain Tumor - very long

Lisa Duke arabella at elfsea.net
Sat Jul 27 09:01:53 PDT 2002


Greetings to all of you,
If you are not interested in someone's medical woes and diagnosis - hit
delete - now.  For the rest of you keep reading.

I have to keep in mind that all doctors don't know everything.  And they
only have their opinion that is why they call it a medical practice.

Last Wednesday I saw a neurosurgeon at University of Texas Southwestern
Medical in Dallas.  Here is what we do know:

I have a mass on my pituitary gland.  The pituitary gland is normally about
10 mm, the mass is approximately 1.3 cm x .8cm (this is in the macro-adenoma
class, greater than 10 mm.)  The pituitary gland is behind the eyeballs
between the 2 optic nerves and under the hypothalamus.  (The part of the
brain behind your forehead.)

"Most pituitary masses are typically benign tumors.  The few tumors that are
malignant are slow-growing and rarely metastasize (grow beyond the organ)" -
Medscape.com

The mass is not at this time causing any optic problems and is not touching
the optic nerves, but it's very close, per a visit to an ophthalmologist.

I am not experiencing any neurological presentations.  (My eyes are moving
where they are supposed to move, my reflexes are normal, my walking is
normal, strength is normal, no tingling in extremities...etc...)

Blood work I had done last week shows NO above normal hormone excretions.

This is what we've ruled out:
Prolactinomas - 1 symptom - milk from breasts.  I have none of that
Acromegaly - giantism - I'm still the same height
Cushing's Disease - No high Cortisol level - blood tests show my kidneys are
functioning normally
Hyperthyroidism, thyrotoxicosis, or Graves Disease - My thyroid levels are
normal

OK here's what the doctor said:

The doctor who read the MRI used the word hemorrhage, which the neurosurgeon
said was incorrect.  That he thought it was a cyst and not a blood mass.

(Cysts are not filled with blood but other fluid.  I currently have many in
my body... That's different issue)

He said, "I think it's a Rathke's Cleft Cyst."

I have seen that word in my research.  I did more research.  The Internet is
wonderful, want to know something look it up.  I also found other
information about something very similar, which from my readings I could
also have because the film showed up so white.  The more solid the mass the
more white the film.

Here's for the really boring stuff -

"The embryonic pituitary gland forms during the first 10 - 12 weeks of
pregnancy.  The anterior pituitary is derived from Rathke's pouch in the
roof of the mouth, which grows upwards.  Cells from part of the brain grow
downwards to form the posterior pituitary.  The Rathke's cleft Cyst happens
when something goes wrong in this process."

"Craniopharyngiomas and Rathke's Cleft Cysts are both rare benign tumors,
which are derived from the remnants of Rathke's pouch.  A craniopharyngiomas
is made of solid tissue, cysts and calcified nodules and occupies the space
within and above the pituitary gland. Rathke's Cleft Cysts are cysts filled
with either a fine or thick fluid and arise within the pituitary gland."  -
The Pituitary Foundation -
http://www.pituitary.org.uk/conference/2001/cranio.shtml

"The mortality/morbidity rate is 0%  There are no racial predilections.  The
male to female ratio is 1:2.  The patient's age at presentation ranges from
4-73 years (mean age 38 years.) (I'm 40 in less than a week) The highest
frequency is in those aged 50-60 years.  Also in a clinical study of 19
patients, 4 had diabetes insipidus, 3 had amenorrhea and 2 had
panhypopituitarism (I don't have that.  It's a lack of hormones.  But I do
have the other 2)" - eMedicine Journal -
http://www.emedicine.com/radio/topic594.htm

"Unlike craniopharyngiomas, Rathke's cleft Cysts are not tumor, but instead
are classifies as developmental abnormalities.  Small Rathke's Cleft Cysts
(less than 1/8th of an inch) are common and do not usually cause symptoms.
When the cysts enlarge, however, they can interfere with pituitary function
or impinge upon important structures such as the optic chiasm.  For this
reason, many of the symptoms produced by Rathke's Cleft Cysts are similar to
those listed for craniopharyngiomas."  University of Texas MD Anderson
Cancer Center - http://endrcr06.mda.uth.tmc.edu/educational/cranio/htm

To give you an example of how rare my condition is, see this from an article
on Craniopharyngioma.  The numbers are from their references:

"Two distinct clinicopathological variants of Craniopharyngioma exist: the
classic adamantinomatous type and a recently described papillary form that
predominates in adults and behaves in a less aggressive manner (2).  They
are rare tumors of uncertain behavior that occur at a rate of 1.3 per
million person years (3).  They constitute 3 to 5 percent of all
intracranial neoplasm.  Although craniopharyngiomas are usually manifested
in children (4), 45% are over the age of 20 and 20% are over the age of 40
at the time of diagnosis.  A total of approximately 338 cases of this
disease are expected to occur annually in the United States."  University of
Pittsburgh School of Medicine, Department of Pathology -
http://path.upmc.edu look under case studies 228

The plan right now is to rule out other causes of my headaches.  The
neurosurgeon suggested a neurologist and I have an appointment with one in 2
weeks.  I thought about my eyesight also.  I'll get a new prescription and
see if that is the cause.  I don't think so because I would notice a
difference in my ability to see clearly.

I'll even suggest that we check out my neck as well.  I have disc issues
between 3-4 and 4-5 that I know about and possibly it has degenerated above
that as well.  It runs in my family.  My mother, my uncle (her brother) and
my cousin (his son) have all had neck fusions.

The neurosurgeon said to come back in 3 months, if my symptoms haven't
cleared or no other cause was found he'd do the surgery.

Surgery is under the lip and into the sinus or through the nose and into the
sinus.  Personally I want to eat.  I want to nose.  Risks include 1. Damage
to the optical nerve, not a problem right now, it isn't touching the nerves.
2. A hormone deficiency, I already don't have this problem, I had a
hysterectomy in January, and I've already had my child.  3. - This is the
part I have to be concerned with, the leaking of the fluid that surrounds
the brain into my sinus cavity.  I've already had less brain fluid, when
they brained the blood from my subdural hematoma; I was with out brain fluid
for a short time.  I heard and felt my brain slosh from one side to the
other when I turned my head too fast.  It was a weird sensation.

Thanks for listening I'm sorry I am so longwinded.  This actually helps me
deal with what is happening to my family and me.  I'll keep you all posted.

Arabella

It is ok with me if you all send this to others who might be interested.  Do
it privately though.  I figured the only public posting should be in Elfsea
where I live.





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