Emily,

I assume you have seen the email which explained the delay in your message being
posted. I am so sorry the timing coincided with your need for a reply.

By now, your mother has had her surgery and is beginning to recover from it.
Please update us as to her status so we can accurately advise you of options
available and ways in which you and your family may assist her.

I am the mother of a daughter about your age and am also a brain tumor survivor
as well as a nurse. So, I feel a special attachment to your situation and have
a few messages for you which I hope you will find useful.

One, your mother is very lucky to have your support and drive to be helpful.
You asked what you can do... it sounds as though you are already on track - you
are reaching out to others for information, being an advocate for your mother,
loving her and longing to do what is right, observing the family's reactions and
trying to discern what will be most useful for your mother. Great job, it
sounds like you already have it figured out. I am truly impressed when someone
like you writes for advice. I hope you will stick around because it seems to me
you will be quite helpful to others as well in the future.

There are so many things to say, I am not sure where to start. First, there is
a meningioma-specific group run by T.H.E. BRAINTRUST which you can read about at
http://braintrust.org/meningioma.htm You may find this group helpful.

In addition, there is a conference to be held in Lincolnshire, IL which I would
highly recommend you considering attending with your family. If your mother is
able, it would be very helpful for her. It is sponsored by the American Brain
Tumor Association and you can find information at
http://www.abta.org/events/141-1

I think one of the best ways to gain information and understanding, as well as
support, is through attending these types of conferences. I have made many dear
friends at these conferences; in fact, as I write this, I realize they are no
doubt my dearest of friends. They understand the situations which face us as no
others can. Family members as well as patients face many challenges when
diagnosed with a brain tumor. Being amongst others who have faced these same
challenges somehow makes everything easier to deal with. New ideas for
compensating, people to turn to for support, information... I can't begin to
tell you how much one (or more!) of these conferences can help.

I will await an update from you. I would like to leave you with a bit of a
positive message though. I want you to know, as hard as it may be to believe,
that many positive things come out of a diagnosis like this. We come to
appreciate the love and beauty of things around us as we never have been able to
before. We learn to understand what is truly important in our lives. We meet
people we never would have met. We learn to prioritize our life in new and more
meaningful ways.

My congratulations to you for a job well done advocating for your mother. I
look forward to hearing from you, Emily.

All my best to you and your family,


--- In BrainSurgery@yahoogroups.com, "emilyssdp" <emilyssdp@...> wrote:
>
> Hello out there...
>
> I am a 24 year old restaurant manager from Evanston IL. Just found out five
days ago my 50 year old mother has an advanced skull base meningioma close to
the facial muscle nerves & hearing nerves. My mother is the most amazing,
wonderful person and always gave me so much more than I ever dreamed a mother
could. Growing up I was always the center of her life and now I don't know how
to give back to her in this time of need.
>
> My mom is actually quite comfortable and at ease with this entire situation.
After all, there is little to do other than take care of it and move on to the
next problem in life, right? She is incredibly strong and confident but I am
worried about my dad and brother. My dad is fine when she's around but cries and
throws up he is so sick with worry. I never imagined seeing him like this! I
don't know how to help him get through this, other than to say everything's
gonna be ok, we are all going to be together and support each other, and I love
him very much... How can I make this easier for my parents to endure? Any advice
and suggestions would be taken as a blessing.
>
> I have been cycling through sadness, anger, crying, worry, depression,
frustration and complacency for 5 days. It's just the thought of us taking her
to the hospital and what they are going to do to her brain & body, praying day &
night for no complications, and the thought of my dad alone and freaking out.
It's so shocking & quick to happen & completely unbelievable to me.
>
> I am angry because my mother has been going to doctors for several years
complaining of "unexplainable" symptoms. She has suffered horrible headaches for
3 years, 6 years for ringing in the ear, extreme fatigue & insomnia. On & off
throughout the past 3 years she has had slight dizziness and vertigo, metallic
taste in her mouth, blind spots on & off in one eye, numbness in the face,
hearing level fluctuations, mood swings. The doctors have gone from treating her
as if she is crazy to telling her she has headaches from a herniated spinal disc
to it's pre-menopause. She has been to ear/nose/throat, eye, spinal, hormonal
specialists. She has a surgery to remove ovarian cysts 2 years ago. She begged
one of these doctors to do a brain scan and with much argument they did a CT,
all the while telling her she is a hypocondriac. The CT didn't pick up the tumor
becuase it wasn't a contrast MRI. All this to save the insurance company a
couple of bucks?!!! I am always stunned by this sort of corporate corruption in
the health care industry but I never imagined this would happen to my own
mother! My dad was so upset he was screaming about wanting to sue the insurance
company and the doctors for negligence but I told him he must stop this negative
path. We have to focus on recovery and what is important-- my mother's future. I
love her so much and this is so scary.
>
> She is having surgery to remove most of the tumor this Tuesday, to be followed
by gamma knife to kill the remnants. She does have one of the most noted
neurosuergeons in the country. Leonard J. Cerullo, M.D., is the founder and
medical director of the Chicago Institute of Neurosurgery and Neuroresearch
(CINN), Chicago, Illinois. I feel confident that if anyone can take care of this
it is him. SO that is relieving at least.
>
> My mom is a very career-focused property manager. The main recovery symptoms
she has been warned about are hearing loss in 1 side, facial weakness/paralysis,
balance & walking problems. She fears that she won't be able to do her work if
she can't smile after this is all over. I tell her it's all about having a
positive outlook and all of our energy will merge to protect her. Nothing
happens that is not in the plans for us. "You gotta do what you gotta do" she
says, laughing. I wish I could do more to make this easier!
>
> I usually only see my parents once a month for a whole day when we hang out at
their house & have dinner with my brother. Well, we are all busy working people
but now I wish I called and shared more with her everyday since I moved out 5
years ago... I've been with her at home 2 nights and have called every day since
the news. I want to be with her all the time but I also want to act natural and
strong, I don't want to overwhelm her as if I'm trying to say goodbye or
something like that, you know?!
>
> Can anyone tell me about their experiences with these situations? Does anyone
have any advice or suggestions for us?
>
> Thank you for taking the time to read this. May God protect you & all your
loved ones.
>
> Emily
>