Hi Trish,

Just felt like writing and sharing with you this
morning.  I hope & pray that life is getting easier
for
you and that most of your major ordeals are behind
you. You certainly have had a plateful and what seems
more than your share!  What type of steroids caused
your eyesight to deteriorate?

Trish, lately I've been disappointed in most the
posts. Is it just me or do they seem more on the
formal side? When someone writes about a particular or
personal problem, are people writing to them
privately?  I miss the personal stuff, maybe it's just
the "cycle" we're in.  Just curious if you feel the
same way?

Hope your day is filled with sunshine!  This was on my
calendar for yesterday and I haven't changed it yet:
After winter comes the summer.  After night comes the
dawn.  And after every storm, there comes clear, open
skies. (Samuel Rutherford)  Hoping you have lots of
clear, open sky blue skies ahead! xo
Robin

__________________________________________________
Do You Yahoo!?
Yahoo! Auctions - buy the things you want at great prices
http://auctions.yahoo.com/

Hi guys,
Just wanted to let you all know that after a long wait, I finally got the
results for my MRI.  Everything is OK!!!!.  I am soooo relieved.
Just wanted to thank those of you who prayed or sent me best wishes.  I can
always count on you guys for support.
Delia

Delia,

I am so happy for you!  Yipeeeeeeeeee!

Jodee

Hi Robin,

Just wanted to say hello and let you know I'm still out here LOL.  I'm not
sure what is going on.  Posting is very low which I can only take as a good
thing.  Maybe its because everyone is doing quite well?  I certainly hope
that is the case.

hugs,

Jodee

Not sure if anyone wants my answers since my surgery was for a cyst rather
then a malginant tumor, but here it is:

PATIENT CARE STUDY QUESTIONNAIRE

AGE AT TIME OF DIAGNOSIS: 28 when cyst was found 34 when they finally
operated

QUESTION #1
Are you male or female: female


QUESTION #2
In what year was/were the tumor(s) first diagnosed?: 1996


QUESTION #3
Are you the patient, spouse, parent, child *(state relationship to patient):
patient

QUESTION #4
What type of brain tumor was the final diagnosis? 15mm colloid cyst in the
3rd ventricle of the brain (very rare)



QUESTION #5
Was a craniotomy performed? Yes, a right frontal craniotomy in 2001, they
waited until the cyst almost killed me before they did anything about it.



QUESTION #6
Was an alternate type of surgery performed (surgical, not radiation) no


QUESTION #7
Was radiation performed? no because it was a cyst (benign)



QUESTION #8
Was chemotherapy performed? no



QUESTION #9
Of all your experiences with medical professionals (from diagnosis of brain
tumor to the present) what was the ONE MOST APPRECIATED aspect of your
health care management?  That my surgeon gave me his home phone number,
beeper, number, etc.  Also the numbers for his nurse practioner.





QUESTION #10
Of all your experiences with medical professionals (from diagnosis of brain
tumor to the present) what was the ONE LEAST APPRECIATED aspect of your
health care management?  The fact that it was discovered that I had this
cyst in 1996 and that they waited until 2001 to do anything about it.  It
was presented to me by a neurologist as a cause of no concern.  Yet years
later when I had a near fatal episode where the cyst blocked off the
cerebral spinal fluid completely, I was told that I was lucky to be alive,
lucky to have lived for 6 years with the cyst in my head causing
hydrocephelus.  I did not appreciate my problem being blown off by the
neurologist.







QUESTION #11
Looking back, is there any information that you wish you had been told
before going into surgery or starting treatment that you did NOT know?  I
wish that I had known exactly how big the incision would be and exactly
where it would be.  It seemed to me that before surgery that the incision
was presented as being more toward the back of the head.  I did not realize
that I would be inconvenienced as much as I am with an incision the shape
and size that mine is.





QUESTION #12
Is there anything that would have better prepared you for recuperation from
your surgery?  I think it would have been nice if the hospital would have
given me a wedge pillow to take home with me to help elevate my head.  Its
not like we are well enough to go shopping for one after surgery.





QUESTION #13 (optional)  List up to five things that may have helped you
prior to surgery/treatment:
1.  not having my diagnosis fluffed off as nothing
2.  not having to wait several weeks for surgery
3.  not having endless scheduling problems at the hospital with tests, time
of surgery, time of admittence, etc. etc.
4.  not being ignored for months by my regular physician who disregarded my
request for an MRI
5.  not having the emergency room ignore my condition and fail to do an MRI

QUESTION #14 (optional)  List up to five things that may have helped you
during hospitalization:
1.  Having a more compassionate nurse to care for my head (wash it) after
surgery.
2.  The squeeze things that they had on my legs were terrible, they were so
hot and annoying, I could have done without those.
3.  Having people listen to me when I tell them that my veins suck.  They
had to try 8 times for an IV.  Thats because they let stupid nurses keep
trying before having someone more qualified do the IV.
4.  Having more bed ready.  It was touch and go for hours as to whether I
would be moved out of a step down unit into a regular room because of lack
of beds and lack of doctors deciding who they were sending home and who they
were not.


QUESTION #15 (optional)  List up to five things that may have helped you
after discharge from the hospital:
1.  A wedge pillow for my head
2.  Knowing if I would be going home or not
3.  Someone to help at home, a nurse or whatever (my husband's employer was
very understanding but I a sure in many cases people cannot take off work to
care for someone)
4.  Some emotional counseling would have been helpful.
5.  More accurate directions regarding meds would have been helpful.

QUESTION #16
If married, has your marriage been affected either positively or negatively
by this experience?  Please explain.  It put a lot of stress on all of us in
my family.  At first I was very stressed out and upset because my husband
did not plan on taking time off to take care of me.  But, when I had my
surgery, they released me from the hospital 2 days later.  That woke up my
husband bigtime!  He took 1.5 weeks off of work to care for me.  That helped
me a lot to show me that he really did care.  Deep down I knew he did but
his attitude going into it was not the best.  I guess overall it helped
bring us somewhat closer together.




COMMENT/QUESTION#17
"Speak Now or Forever Hold Your Peace":
Excerpts from quotes collected here will be used in slides and publications.
Have something to say?  Advice?  Something that may be useful to future
patients?  Wasn't covered above?  Put it here!
I know that I only had a cyst, but needless to say, any brain surgery is
devestating to a family as you can imagine.  I think we all came out of it
fine.  As someone whose tumor was not cancerous, I wish that there were some
support group for us.  I was given the number by my daughters pediatrician
of a social worker at the oncology department at the hospital for support
with the surgery.  I never called her though because I didn't have cancer
and felt stupid asking for emotional support for a non-malignant situation.
Whether your tumor is benign of malignant, this type of surgery is a life
altering event and it would be nice that whichever the case, if some
emotional support in some way were offered to patients.  It hit me about a
month after surgery what I had actually gone through and I fell in to deep
depression.  Maybe had I gotten support from the start I wouldn't have taken
that fall.  You have to treat the whole person.  You can't just rip out
their skull and extract a tumor and be done with it.  There is so much more
to it.

Hi Anne,
Were you able to forward the information I gave about dinner to the girls?
Sorry for being such a pain in the neck.
WATCH OUT WASHINGTON, HERE WE COME!!

Delia

Jodee --

Thank you SO much for your input.  You made several good points.  Having had
a benign tumor myself, I understand your feelings about feeling "guilty" and
having the surgery experience lessened somehow.  But you are so right...  any
brain surgery is an enormous hurdle to get through.  As though I am sure you
feel as lucky as I that we had benign growths, the effects from the mass
being in your head and having your skull opened or invaded are still very
real.

I'll say more about this in another post.

Trisha

I really appreciated Robin's letter.  I don't know about the rest of you, but
even with fewer posts, I do always feel like I have the power of this group
behind me.  I don't feel alone or so "different" anymore just knowing all of
you are there.  It's thoughts like Robin's that mean so very much to me.

I'm going to address her note piece by piece to make my responses a little
clearer:

In a message dated 05/05/2001 12:01:34 AM Eastern Daylight Time,
rkd911@... writes:

<<
  What type of steroids caused your eyesight to deteriorate?
During the hospitalization for surgery, I was given Mannitol IV.  Upon
discharge I was placed on Decadron and continued to take that for 5 months
until I FINALLY refused to take it any longer and they agreed to wean me off.
  I realize it was necessary to prevent brain swelling and at least the
consequences are correctable.

Is it just me or do they [the posts to this website] seem more on the formal
side? When someone writes about a particular or  personal problem, are people
writing to them  privately?
I may be wrong, but I feel that I am the one most responsible for this
change.  I'd been having so much trouble with my vision that I had found
myself able to use the magnifyer to READ the posts, but it was difficult to
send my own posts without being able to see the screen.  Excuses, excuses.

As the moderator and creator of this group, I want to apologize to all of you
for not being more supportive.  I don't know if other people have been
privately addressing emails, I have answered several privately.  Also, I
receive some privately.  So I do assume that many people are getting answers
and not just posting to a vacuum. (!)  Sure hope I'm right!

What do the rest of you think?

  And after every storm, there comes clear, open skies. (Samuel Rutherford)
Hoping you have lots of clear, open sky blue skies ahead!
This was so sweet!  As I shared all of my challenges and bad times with this
group (MRIs, divorce, change of job, lawsuit, etc.) let me now share some
GOOD news.

I have reached the clear, open skies.  They'll be a little clearer when I
have my second cataract repair on Wednesday, May 9 (my birthday!  the gift of
sight!).  As for the lawsuit, it was settled out of court and is finally
over.  My divorce was final on February 28 and I am very, very happy to be
able to come home to a peaceful life and relax!  I've even started seeing a
man and we have the beginnings of what seems to be a wonderful
friendship/relationship.  We'll see how that goes!

Thank you Robin and the rest of you for being so supportive and caring to me
through all of this.  Now, it's time for me to support what I said I would
do.  I do have many ideas and I haven't given up on the purpose of this site.
  Namely, to improve the quality of patient care for brain tumor patients.

More to follow...

Love to all,
Trisha

As I said in my last post, I want to get myself and all of us back on track.

On our home page it says: "The purpose of this site is twofold. The primary
purpose is to collect information from brain tumor patients - what have been
your most positive experiences? most helpful? most destructive? Site plan: to
present collected data to Neurologists, Neurosurgeons and other health care
professionals in the hopes of improving quality of care and level of
understanding on the part of health care providers regarding the physical and
emotional needs of brain surgery patients."

Purpose #1, collection of data, has been underway for over a year.  I know
I've said it before, but I am going to summarize many of the polls as Mark
Hargrove would do with the polls he created.

Even with leaving them ongoing, certain needs and general feelings have
become apparrent.  Here are a few I have noticed:

1.  The majority of people feel that support groups help them.
2.  Most people felt it would have helped them to have been able to talk to
      another brain tumor patient.
3.  Most people wish they had been better educated about brain tumors.

Now, imagine this...  Bring yourself back in time as though it were the day
you were first told you had (or your loved one had) a brain tumor.  After
being given the news, the doctor hands you a card.  It says "Braingels" and
there is a name and phone number on the card.  That name is the name of
someone who has been through the BT ordeal themselves.  You call that number
and have someone who understands what you are going through - your fears,
feelings, questions.  Then you meet and are handed written educational
literature.  You find out that there are brain tumor associations, mail
lists, our web site.  Immediately, you are not alone.

If you were told, as I was, in the hospital about your diagnosis, a person
from Braingels stops by your room.  They tell you their connection to you and
tell you what to expect.  They check on you to see how you're doing after
discharge.  They introduce you to our group and others like it.

I love this idea.  Here's what I would do if you all agree.

We have people in this group and others (Braintmr/Braintrust, Johns Hopkins,
Meningioma, and many more) from all over the world.  In particular, all over
this country.

Why couldn't we develop a network (called Braingels - like Brain Angels, get
it?) and let neurologists, neurosurgeons, ICUs, medical societies, the health
department, whoever... know what we want to do.  ???  I am ready to invest in
this as a non-profit organization.

Anyone interested in hearing more about this?

There are grants out there as well.  I think this would be great.  I've
already discussed it with Kim Chranium (she probably thinks I forgot all
about it... sorry, Kim).  I'm ready to commit to this now.

Well, what do you all think?  Let me have it, good or bad!

xo
Trisha

I have to say that I am proud of myself.  My daughter's school building was
set fire by a couple of teenage boys who threw a homemade bomb at the school
made of gasoline and beer.  Long story short, there was a meeting on Friday
for parents at a different school to find out how they are going to handle
school for the rest of the year.  I had brain surgery to remove a growth in
my brain in February and my hair is still very short although growing back
in.  I have a large U shaped incision that goes down the center of my head
and then loops around and comes back on the right side of my head.  You can
see the incision on part of the side of my head quite easily, and the one
down the middle can be seen in sunlight or at the "right" angle because of
the lack of hair.  Anyways, this is why I am proud of myself.  I went to the
meeting without covering my head.  It was 87 degrees outside and there were
about 200 parents in a small auditorium so I forgot my hat and said to
myself, anybody who doesn't like it, TOUGH!  Its a big step for me because I
am so self-conscious about my head.  I just wanted to share that.  I think
it was a big step for me in my "healing" process.

Jodee

Trisha,

I was never approached by anyone for any kind of emotional support
whatsoever.  Nobody came to visit me to see how I was doing emotionally, I
was never hooked up with anyone for emotional support at all.  That is why I
am so glad that I have this list!  In a trip to my pediatrician with one of
my kids, I told them that I was going to have surgery.  It was the
pediatricians nurse who gave me the name of a social worker at the hospital.
But, she holds a support group at the hospital for brain cancer patients.
That was not for me because I didn't have cancer.  Know what I mean?  The
problem is that cysts like mine are so so rare that it might be hard to hook
up with others.  I am on another list called colloid cyst, which is what I
had and is made up of people who had cysts in their brain.  Sometimes I feel
it would be good to talk to others and sometimes not.  My experience on the
colloid cyst list is that some people went to hell and back.  Most talk
about long term problems and difficulties.  I have faired better then they
have to be honest, and their stories scared the crap out of me!  For me, I
think emotional support afterwards might have been a godsend, but talking to
people before only scared me more because usually the people willing to talk
are the ones who have something to complain about and had a bad experience.
I think your idea is great, just not to sure how it would work.  I would
feel terrible if I talked to someone and told them of my experience and then
theirs turned out to be 100x's worse, know what I mean?  The sad part is
that each city across the country has such varied surgical talent and varied
technology that you can't really address how another patient is going to do
or even what to expect.  Know what I mean?  I definitely think that what you
are suggesting can only be positive, but I worry about patients talking to
one another because care is so varied that it might not give them a true
sense of what they will go through.  For after care support, I think it
would definitely work!  Which I think is what you are suggesting.  I know, I
for one was very lucky that my surgeon feels that craniotomy is best for
removal of cysts and that he had the stereotactic technology and experience
under his belt.  I heard from so many people on the colloid cyst list who
promoted endoscopy, but I am glad that I trusted my surgeon because I have
no memory problems, no weaknesses, no after affects of the surgery other
then regular incisional pain and stuff like that.  Had I listened to them
and insisted on endoscopy, I might not have faired as well.  Endoscopy is
not even performed in my city, I would have had to travel elsewhere.  I live
in Rochester, NY and we have the nationally famous University of Rochester
here who is a leader in medical technology and talent.  Not everyone has
that.  I wish that care was as good as I was able to get in my hometown as
it is across the bored.  Sometimes I think that internet hurts the patient
more then it helps because they seek out information and feel that
everything on the web must be true.  They talk to others and think they must
be right about something (such as the endoscopy) just because they went
through it, or just because it would be a smaller incision.  I for one am
glad that I trusted my surgeon and didn't let people on the net, dictate or
persuade me into different medical decisions.  I think your idea is
absolutely wonderful for after care support, but I for one feel that having
talked to others via the net ahead of time just confused me more.

fondly,

Jodee

In a message dated 05/06/2001 7:13:23 AM Eastern Daylight Time,
jodee@... writes:

<< Anyways, this is why I am proud of myself.  I went to the
  meeting without covering my head.  >>

Jodee!!
You said it...  if they don't like it, TOUGH!   Why should you worry about
THEM being uncomfortable seeing this...  doing this is such a big step
because it shows that you are comfortable with yourself.  I don't know about
the rest of you, but getting comfortable with "myself" after the surgery was
one of my biggest challenges.

Here we have one of our newest surgery members beginning to conquer this so
soon.

I think it's safe for me to speak for the group in saying that we are ALL
proud of you.  Keep up the good work.

Trisha

We would like to remind you of this upcoming event.

Brainstorming Session

Date: Wednesday, May 16, 2001
Time: 9:00PM - 10:00PM EDT (GMT-04:00)

Come on and join us for a live chat!  It's a good time to really
get to know each other and share our ideas and feelings.

Just open this shortcut when it's time to meet:

http://www.egroups.com/chat/BrainSurgery

Hope to see you there!

Trisha

We would like to remind you of this upcoming event.

Brainstorming Session

Date: Wednesday, May 16, 2001
Time: 9:00PM - 10:00PM EDT (GMT-04:00)

Come on and join us for a live chat!  It's a good time to really
get to know each other and share our ideas and feelings.

Just open this shortcut when it's time to meet:

http://www.egroups.com/chat/BrainSurgery

Hope to see you there!

Trisha

Dear Friends,
This is a long overdue status update on HR239 and a report of Brain Tumor
Awareness Week (BTAW).

The quick summary is that HR239 has well over 30 sponsors and five more were
added directly because of our efforts at BTAW.  On the Senate side it is a
race to see who introduces the Senate equivalent Bill first.  Among the
likely candidates are:
Senator Specter
Senator Clinton
Senator Feinstein
Senator Boxer
Senator Reed

The plan in the House of Representatives is to have HR239 sent to the House
floor under a "suspension of the rules".  This is a common practice for
non-controversial Bills.  A 2/3 vote of the House and it is passed.

The hope in the Senate is that Senator Specter, as the Chairman of the
Labor-HHS
appropriations subcommittee can add it into his appropriations bill.

However, WE MUST NOT STOP OUR EFFORTS until the Bill is signed by the
President.  One thing that we learned is that the most effective way to
contact your legislators, short of a meeting, is to write a HANDWRITTEN
letter.  I urge each of you to do this.  We must show there is massive
support for this Bill.

So much for HR239.  Here is a summary of BTAW (as seen through the prism of
HR239 efforts).

BTAW was fun and effective.  There were difficult moments.  There were
hilarious moments.  There were at least 200 of us, the largest turnout yet.

It is amazing how easy it is to visit Congressional offices.  Often we had
appointments but often we made "cold calls".  We would just walk in saying,
"Hi, we are here from the North American Brain Tumor Coalition.  Can we speak
to the legislative aide on health issues."  Everytime we met with the aide.

All the visits we made either resulted in the aide stating that she/he would
recommend support for HR239 or the Representative himself/herself directly
stating they would sign onto HR239.

The Brain Activists (brain-activist@yahoogroups.com), a wonderful group you
should checkout, put on a candlelight vigil in the Arlington National
Cemetery and a rally at the Capitol.  Both were magical events.  The vigil
got TV coverage.  We found the legislators and the media were amazed and
surprised that brain tumors are now the leading cause of children's death
from tumors.

For those of you who could not come we missed you but understood.  We hope to
see you next year.  I guarantee the next year's BTAW will be even more
exciting.

God bless you all,
Lloyd Morgan
Chief Cheerleader BRAIN 2001
1995 meningioma survivor

Dear Friends,
Below is a wonderful note from Danielle in Congresswoman Barbara Lee's
office.  Please join in celebrating our efforts together.  Don't forget to
call those you contacted at BTAW.

Lloyd
Chief Cheerleader BRAIN 2001
1995 meningioma survivor

In a message dated 5/17/2001 5:53:57 AM Pacific Daylight Time,
Danielle.LeClair@... writes:

<< Subj:     RE: HR239 Status & BTAW Report
  Date:  5/17/2001 5:53:57 AM Pacific Daylight Time
  From:  Danielle.LeClair@... (LeClair, Danielle)
  To:    Bilovsky@... ('Bilovsky@...')

  Lloyd, I just wanted to let you know which Members had signed on so far so
  you can make follow up calls to others who committed to cosponsoring HR 239
  but hadn't yet:
  Here's who has signed on:
  Rep. Carolyn Maloney (D-NY)
  Rep. James Leach (R-IA)
  Rep. Judy Biggert (R-IL)
  Rep. Curt Weldon (R-PA)
  Rep. Dana Rohrabacher (R-CA)

  That brings us to 44 cosponsors total.  These names will show up by tomorrow
  on the Congressional website, www.congress.gov  People can then type in the
  bill number, HR 239, and then click on the link for cosponsors.

  Thanks again for the terrific work you all did during BTAW!
  Take care,
  Danielle
  Rep. Lee >>

For those ladies needing a casual hat to help them through the difficult
time when their hair is growing back, Walmart has 2 faded glory baseball
hats for only 3.00.  They are comfortable to.  I like them now that summer
is approaching because the hair is growing back well everywhere except my
incision so right now I can put on a baseball cap and blend in with the
crowd rather then wear a bandana on my entire head and get stares.

(\o/)   hugs,
  /_\          ~Jodee~