Dear Sarah,

No real advice here on your dilemma.

But I did want to welcome you to the "Brain surgeons are not always brilliant
and can be idiots club".

I won't go into it, but my brain surgeon said and did many things that were so
deceiptful and manipulative to me at my most scared, vulnerable time of my life.
I will never forgive him for it.

Just keep searching for other opinions, do a web seach. Go to the major brain
tumor society sites and get info from them and the major brain tumor
hospitals-someone will forward that to you.

On the plus side. I only see a neuro-oncologist now and I have never had
radiation or chemo. I just trust this individual more than I ever did the
surgeon. A surgeon cuts, an oncologist treats. Just as a competent neurologist
on your team is a good idea. When I see my oncologist we go over my most
current scans talk about my health, progress, and goals for treatment if ever
necessary. Oncologists aren't all bad. They know tumors upside and down.
Surgeons just take them out. I know I am bitter towards surgeons but believe me
I am entitled.

Go to the oncologist and feel it out. They might be able to refer you to
other specialists also. Not to mention, you have final say on what happens to
you. Do not do anything you do not feel comfortable with and definitely do not
do anything without at least a second possible third opinion.

Okay, so I guess I did have a little advice,
Claudette 41yo Oligodendroglioma II
grande male 5/4/02 dx 5/16/02 gross total resection 5/30/02
Topamax 50mg Provigil 100mg

trisha4080 <trisha4080@...> wrote:
About a month ago I was diagnosed with obstructive hydrocephalus due
to a
Subepyndemal Giant Cell Astrocytoma (SEGA) that was growing on top of my
foramen of Monroe and not letting the CSF drain out of my head the way it
is normally supposed it.

On 7/6/07 I had a craniotomy performed to get the tumor removed. To make
a long story short there were some complications, I left the hospital with
a vp shunt since the hydrocephalus kept coming back after the surgery. My
doc also left me on the Dilantin when I was discharged. I was diagnosed
with tuberous sclerosis complex at 4 but have been seizure and med free for
20 years. My doctor told me that he could only get 90% of the SEGA out
without causing brain damage and that when he looked at it, it looked more
aggressive than he was suspecting (I am picturing tenticals possibly). He
sent the specimen to Mayo clinic to have it double checked and they came
back and said it was still a SEGA and assigned it WHO grade 1. Throughout
this entire process my husband went with me to all of my appointments with
the surgeon to be my second set of ears and ask more questions (he is an
engineer and doesn't easily accept blow off answers from
people). My husband asked over and over if I would need any chemo or
radiation in the future and the doctor always said no. Well earlier this
week I got a call from an oncologist office and they told me that I have
been referred to them by my surgeon for a consultation. I
almost dropped the phone. I went ahead and made an appointment to come in on
the 18th and hear what they have to say.

We have been driving ourselves crazy combing the Internet for insight to
this situation, asking ourselves is this normal treatment for a SEGA. My
husband has his fingers crossed that maybe they have me confused with
another patient. We don't understand why I would need chemo or radiation if
the SEGA is a grade 1 and we are furious that he never told
us this, we've been on the phone with his office who claims it is in my
record that he told us when I came in to get my stitches taken out we were
both there any he never said that.

Also does anyone have any advice on how to find a neurologist who sees
adults with TSC in Dallas Texas? We take our sone Daniel to Scottish Rite
Hospital for Children and he sees Dr. Sparagana but when we ask him if he
knows any docs that see adults with TSC there isn't anyone for him to refer
us to. Frightening thought, when kids outgrow their free TSC clinic like I
did they will have no doctors to go that are familiar with this condition
for
adults.

Please share with me any thoughts or experience you may have about this.
I am already bald from my surgery and anxiously awaiting my hair growing
in, now if I have to do the chemo or radiation I am wondering if everything
will just fall out as soon as it is growing in.


Sarah Corekin
39 w/tsc2 mom to Joseph (no tsc) and Daniel (tsc2) 33 month old twin
boys

[Non-text portions of this message have been removed]






---------------------------------
Shape Yahoo! in your own image. Join our Network Research Panel today!

[Non-text portions of this message have been removed]