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?

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@...>

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]

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]

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]

>

Hi Nancy!



You should like your neurosurgeon, he has his life in your hands.  If your not

comfortable with this guy or he doesn't treat you with respect, can you go to

someone else?  Your right in that he is the surgeon and really you don't have

much interaction with the surgeon himself, most interaction is with other team

members but... you should be comfortable with him.  I understand your fear, we

all go through it.  I am glad you are ready now and have your husband for

support.  I am sure you will do great, please let us know how things go.



Jodee

Jodee,

         Thank you for supporting me. And your right. I should have to have faith

in him especially, the surgeon. But I will give him a 2nd chance. Everyone

deserves one. When my next comes my husband will be with me and we will see

then. But again thanks for your support and I will let you know about the

future. Because I really do have one.



      Thanks,

      Nancy











________________________________

From: Jodee <jodee@...>

To: BrainSurgery@yahoogroups.com

Sent: Saturday, June 27, 2009 6:31:54 AM

Subject: Re: [BrainSurgery@Yahoo] Surgery











Hi Nancy!



You should like your neurosurgeon, he has his life in your hands.  If your not

comfortable with this guy or he doesn't treat you with respect, can you go to

someone else?  Your right in that he is the surgeon and really you don't have

much interaction with the surgeon himself, most interaction is with other team

members but... you should be comfortable with him.  I understand your fear, we

all go through it.  I am glad you are ready now and have your husband for

support.  I am sure you will do great, please let us know how things go.



Jodee















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

Yes you sure do have one!  Please keep us informed.  My personal e-mail at home

is jodee@... and my work e-mail is jodonnell@... if

you ever need to talk don't hestiate to drop me an e-mail.



God Bless



Jodee





--- In BrainSurgery@yahoogroups.com, Nancy Illing <mooky133@...> wrote:

>

>     Jodee,

>         Thank you for supporting me. And your right. I should have to have

faith in him especially, the surgeon. But I will give him a 2nd chance. Everyone

deserves one. When my next comes my husband will be with me and we will see

then. But again thanks for your support and I will let you know about the

future. Because I really do have one.

>

>      Thanks,

>      Nancy

>

>

>

>

>

> ________________________________

> From: Jodee <jodee@...>

> To: BrainSurgery@yahoogroups.com

> Sent: Saturday, June 27, 2009 6:31:54 AM

> Subject: Re: [BrainSurgery@Yahoo] Surgery

>

>

>

>

>

> Hi Nancy!

>

> You should like your neurosurgeon, he has his life in your hands.  If your not

comfortable with this guy or he doesn't treat you with respect, can you go to

someone else?  Your right in that he is the surgeon and really you don't have

much interaction with the surgeon himself, most interaction is with other team

members but... you should be comfortable with him.  I understand your fear, we

all go through it.  I am glad you are ready now and have your husband for

support.  I am sure you will do great, please let us know how things go.

>

> Jodee

>

>

>

>

>

>

>

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

>

Nancy,



I agree it is important to have faith in your doctors and surgeons.  One of the

ways I obtain that trust is by asking questions, researching the doctors and

getting second opinions.



Have you gone to another surgeon for a second opinion?  Has your doctor done

these surgeries before?  What has been the success rate for his patients?  What

will be involved as far as recovery?  What are the pros and the cons of having

the surgery vs. not having it?  Are there any other options available to you?



You may already have asked these questions, but these are the questions I would

want answers.  And, although this may be the absolute best thing for you to do,

getting a second opinion about it would only serve to help make your decision

even easier - there is nothing to lose by getting that second opinion.



Well, that's my two cents.  :)



Wishing you all the best, no matter which direction to decide to take.



Trisha



Patricia Williams, R.N.

Group Founder and Moderator

5 cm frontal/parietal/temporal convexity meningioma removed 5/3/99





--- In BrainSurgery@yahoogroups.com, Nancy Illing <mooky133@...> wrote:

>

>     Jodee,

>         Thank you for supporting me. And your right. I should have to have

faith in him especially, the surgeon. But I will give him a 2nd chance. Everyone

deserves one. When my next comes my husband will be with me and we will see

then. But again thanks for your support and I will let you know about the

future. Because I really do have one.

>

>      Thanks,

>      Nancy

>

>

>

>

>

> ________________________________

> From: Jodee <jodee@...>

> To: BrainSurgery@yahoogroups.com

> Sent: Saturday, June 27, 2009 6:31:54 AM

> Subject: Re: [BrainSurgery@Yahoo] Surgery

>

>

>

>

>

> Hi Nancy!

>

> You should like your neurosurgeon, he has his life in your hands.  If your not

comfortable with this guy or he doesn't treat you with respect, can you go to

someone else?  Your right in that he is the surgeon and really you don't have

much interaction with the surgeon himself, most interaction is with other team

members but... you should be comfortable with him.  I understand your fear, we

all go through it.  I am glad you are ready now and have your husband for

support.  I am sure you will do great, please let us know how things go.

>

> Jodee

>

>

>

>

>

>

>

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

>

Hello.

 

My son just had brain surgey 6 months ago. He has always been a healthy child,

now 19. He had a massive brain tumor. The tumor was removed, but due to damage

to some of his nerves he is now legally blind, and lost 30% of his hearing.

 

Its been very difficult and sooo painful as a mother to seem him go thru all of

this. My advice to you would be to get a second opinion. Research everything!

Decide if having this surgery would improve anything. Its very hard to loose

your independence.

 

Pam



--- On Thu, 6/18/09, mooky133 <mooky133@...> wrote:





From: mooky133 <mooky133@...>

Subject: [BrainSurgery@Yahoo] Surgery

To: BrainSurgery@yahoogroups.com

Date: Thursday, June 18, 2009, 7:20 PM

















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?







































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

Pam I am so sorry your son has gone through this ((((((((((((((Pam and

family)))))))))))



Jodee