Nancy,

Once again, I am so impressed by the support of your family and your diligence
in educating yourselves about what is to come. This is not something patients
always did; it used to be (and still is for many) a case where "whatever the
doctor says must be best" We have learned that we, as patients, have a right to
be informed and be involved in decisions. Most of all, we have a right to have
our questions answered in a way we understand and to have the opportunity to
express our concerns and opinions.

Your question has been raised before and it is a good one. The first thing I
always say is to get a second opinion. Any good surgeon will not be insulted by
this. Where do you live? Perhaps we can suggest a good neurosurgeon or medical
center for you to consider getting a second opinion from. You can visit this
site http://www.brighamandwomens.org/neurosurgery/Patient/seizuresurgery.aspx
and request an e-consultation via the internet for seizure surgery. This is
just one way to gather information and continue on your path armed with
information and awareness.

I am going to cheat here by cutting and pasting from a previous post. Also,
feel free to go into the "messages" section of the website where you can search
on specific terms (i.e. questions before surgery, etc.) and see similar
scenarios from over the past nine years. You may find them reassuring and
informative.

Here goes:

"One of our members said it so well. "Educate, count blessings,
build the team and move forward a day at a time. The unknown will show
itself in due time." J.T.

I think this is a perfect way to start because it says it all.
We can help you with the education part (and some support!), and ... help
distract you and prepare you, you can learn all you can and build your team.

First, I am going to recommend you read one of the LINKS
sites, "Preparing for Neurosurgery" at
http://www.brighamandwomens.org/patient/neurosurgeryplanner.pdf

Even though this is for patients having surgery at Brigham and Womens
Hospital in Boston, it gives an excellent description of what to expect before,
during and after the surgical procedure.

Second, there are several archived messages I will recommend to
you. Messages number 3460, 3461, 3085 and 3658 may be particularly
useful to you as you face your surgery date...

I do want to give you some advance notice on something you will
probably experience for a while after your surgery. Namely: fatigue. This is one
of the most common complaints of people after having brain surgery.

A couple of places I suggest you read more, in addition to
archives and links, are:

If you have difficulty with any terms, there is a dictionary at
http://neurosurgery.mgh.harvard.edu/abta/diction.htm

and http://tbiguide.com/fatigue.html (check out the other chapters in this
book, it is a GREAT resource)

What I wish I had had the time to do (due to the size of my
tumor, I was admitted, diagnosed and had surgery all in a couple of days... no
time for preparation, looking up anything or getting a second opinion, etc.) is
this:

Look over the information here. Share it with your family and
friends who will be taking this journey with you to help them know what to
expect and allow them to know their role in how they can help you. Come up with
your game plan. Know that you will need FREQUENT rest periods after you come
home. Make sure they know this so when visitors come to see you, they can watch
for signs of you needing to slip into your room for a nap. They will then know
how to explain to your friends and relatives that you need your rest in order to
heal and progress. All these things will make your journey easier.

Keep a diary. I would start now. Especially after your surgery though and if
you can't do it in the first week or so after surgery, assign it to one of your
friends or family members. Just something that summarizes how you are doing,
what you are having difficulty with, significant findings/incidents, etc. That
way, later, you can look back with a clearer understanding of how far you have
come.

Consider starting a care page. You can read about this at
http://www.carepages.com/ This is a free service (you can even buy a bound copy
of all your entries after you 'complete your journey'). This alleviates much
stress from your family and friends because (a) people can check to see how you
are doing without your family taking many calls per day and (b) it will be a
wonderful thing for you to hear all the messages which are sent to you - someone
can even print them out and bring them to the hospital to read to you.

Write as often as you need to, that goes for anyone, as more
questions arise. And, as I have said to many before, soon you will be
on "this side" consoling and advising newcomers to the group. "

Please let us know as you progress. Even though many of us had tumors removed
instead of scar tissue, the surgery experience itself will be quite similar if
not the same as for many of us.

Some things I'd like to add to above:

Have your guests in the hospital demand good handwashing from the caregivers.
The nurse or hospital staff should always wash their hands if they are going to
touch you. After your surgery, you want to make sure everything possible is
done to prevent infection. I am like a bulldog as far as handwashing when
visiting friends or family in the hospital! I've even been known to post signs
at the bedside reminding the staff it is very important to this patient that
they practice good handwashing. (ok, I know I'm a fanatic about this, but I used
to be an infectious disease specialist so I know how important it is!) You may
also want to check out the rate of nosocomial infection at the hospital you will
be operated on. This is the rate of infections acquired by patients while in
the hospital. It's reassuring to know if they have a good rating here.

Lastly, I want to tell you that, as far as my experience (and everyone is
different), the experience of craniotomy was not nearly as bad as I had
imagined. I had more pain after my C-section. I attribute this to the fact
that you can keep your head very still and do not use the muscles which are cut
as much as you do for other areas of the body. The most difficult parts, to me,
were the disorientation following surgery and the patience it required to regain
the stamina and concentration. Don't be hard on yourself. Be patient with
yourself and take it one day at a time.

I hope this is helpful. Please stay in touch with us and let us know how you
are doing.

Sincerely,
Trisha Williams, R.N.
List Founder and Survivor




help support our cause by visiting www.braingels.org
--- In BrainSurgery@yahoogroups.com, Nancy Illing <mooky133@...> wrote:
>
> Hello,
> I first have to say THANK YOU for getting back to me at all. You are the
first person who ever returned my emails. Congratulations on your daughter's
graduation and happy birthday.
> Sorry if I run on but please bare with me.
> About a year ago I had seen my neurosurgeon and he had told me about the
surgery and scared me so much I didn't go back. My neurologist wasn't happy with
me but I guess he understood that I would have to come to terms with it. But I
am finally ready. I think. I'm not sure what the medical terms for my problem is
but, I have scars from the forceps the Dr. used when I was born. He crushed my
head trying to deliver me. I had cuts up and down the side of my face, 2 black
eyes, and one side of my head was higher than the other. It was so bad the hosp.
never took my first picture. You know the one all babies get when their born. I
weighed 10 pounds. I never had any issues till I got older. They said it was
sleep apnea at first. After many hosp. stays and car accidents my husband said
wait a minute. He said something was wrong and he was gonna find out what it
was. So now they tell me about the scars and they are on the left and right
lobes as well as across
> the frontal lobe. From the research I have done myself I find that I may need
more than one surgery because I have so many scars. My next appointment is with
my surgeon and he will tell my husband everything we need to know. The last time
I saw him he said he didn't want to talk to me anymore that I wasn't
understanding what he was saying and next time I come to bring someone with me
that has my issue at stake. That was one of the reasons I didn't go back to
either. But I realize now I don't have to like him. He just has to do what he
knows how to do. My daughter is 6 and she deserves to have a mother that isn't
so sick. My husband deserves to be able to go to work instead of having to watch
me. And no one will ever say to me you cannot work or drive or even ride a bike.
> I hope this answers some of your questions. I don't really know everything
we should ask when we do go to the surgeon. If you could help me out with that.
They say I should get a surgery date then. Now what?. I haven't even told my
husband about getting a date already. It kind of took me back when she said it.
But I must do it for my beautiful daughter Glory and my wonderful husband Gean
as well as myself.
>
> Thanks,
> Nancy
>
>
>
>
>
>
> ________________________________
> From: Rachael Coldwell <rachcold6@...>
> To: BrainSurgery@yahoogroups.com
> Sent: Friday, June 19, 2009 11:52:24 PM
> Subject: Re: [BrainSurgery@Yahoo] Surgery
>
>
>
>
>
> Hi,
>
> What surgery have they indicated you should have? Have they gone through all
of the possible risk with you? What is it for exactly? Do you mean scars?
>
> My husband had a bifrontal interhemispheric craniotomy and although the last
few months have been horribly exhausting and I need to care for my husband I
wouldn't have it any other way. Please don't worry about being a burden to your
family. They love you and only want to care for you and make you happy. He has
lost his sense of smell but he still remembers what things smelt like. I'm sure
they will support whatever you decide is best for you.
>
> Best wishes
> Love
> Rachael
> w/o Barry 37
> dx craniopharyngioma 21/01/09
> craniotomy 16/04/09
> rehab 29/04/09...til. ...
> MRI 19/06/09
> Meds - thyroxine, desmopression, hydrocortisone, testosterone, phenytoin
>
> ____________ _________ _________ __
> From: mooky133 <mooky133@yahoo. com>
> To: BrainSurgery@ yahoogroups. com
> Sent: Friday, 19 June, 2009 8:50:22 AM
> Subject: [BrainSurgery@ Yahoo] Surgery
>
> My drs. have advised me to have surgery to remove the scares that have formed
from injuries received while I was born. I am 44 yrs old, and have a beautiful
family that takes very good care of me. I started having seizures and was
diagnosed with epilepsy about 8 yrs ago. Now with this little bit of background,
the thought of surgery scares me to death. The little bit I've talked to my
husband and daughter they are behind me although I can tell they don't really
want me to have it done. Because of where the scares are it could possibly cause
me to lose one of my senses like my sight, hearing, taste, smell, or touch. I
don't know what to do. I'm lost. What will it be like if I do have it done and I
have complications as well as still have uncontrolled seizures. I'm already a
horrible burden on the family.. I don't even know what I'm asking for here. Just
some impartial input. Anything please can someone help me?
>
> Access Yahoo!7 Mail on your mobile. Anytime. Anywhere.
> Show me how: http://au.mobile. yahoo.com/ mail
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
>
> [Non-text portions of this message have been removed]
>