I have to agree with what Sarah C. said. My husband's first neurosurgeon was a
brilliant surgeon, but his bedside manner left a lot to be desired. The entire
hospital record keeping situation was a mess, and we got the impression the
doctors we were dealing with at that particular hospital were all arguing with
each other over what exactly was going on with my husband. We bounced from "low
grade astrocytoma, don't worry about it" one week, to "Oh, MY GOD! THIS IS A
GLIOBLASTOMA MULTIFORMA! How could we have screwed up? You have a year to
live!", to "Oh, no, wait, it looks like normal healing from the scar tissue" the
next time. All from the same doctor!
We finally realized we needed to demand copies of all reports, tests and films
each appointment, to check for errors, because clerical error, and a
neuro-radiologist not bothering to read the complete file before rendering an
opinion on an MRI were the main cause of the confusion.
Three weeks, a PET-scan, another MRI, and a NEW neurosurgeon at a different
hospital later, we have a diagnosis we feel we can live with. It is, "Well,
you've probably got some sort of tumor there." LOL!
But, seriously, my poor husband is one of those unlucky people with
unidentifiable possible glioma cells. The good news is, the "tumor" hasn't grown
or changed in three months. The neurosurgeon has recommended a neuro-oncologist
that the American Cancer Society has told me is top notch, and very easy to work
with. We have some options. We know it is probably going to kill him someday,
but not within a year. He is 51. He could have 10 or 15 years if we are lucky.
Our kids are grown, in their early 20's. We have time to adjust our dreams a
bit. We are lucky. Luckier than a lot of people. Even in this, God has blessed
us.
I was talking to my mom yesterday, and we both agreed, that of all her 4
married daughters, I am probably the one who is emotionally strongest able to
handle a situation like this. Go figure! Years and years of therapy, on
anti-depressants, and I am ok with a husband with a "thing" in his head.
He has no symptoms right now, only a teeny loss of peripheral vision from the
surgery.
Hoping it stays that way for a good, long time.
Cookie


http://cookieknits.wordpress.com/



----- Original Message ----
From: claudette saville <claudettesaville1@...>
To: BrainSurgery@yahoogroups.com
Sent: Monday, August 13, 2007 1:46:35 PM
Subject: Re: [BrainSurgery@Yahoo] From Sarah C: Brain tumor treatment plan

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@comcast. net> 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]




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