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#1312 From: anne91547@...
Date: Mon Nov 3, 2003 1:19 pm
Subject: Neural stem cell repair famnine
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http://www.med.umich.edu/opm/newspage/2002/neuralstem.htm
Neural stem cells move to damaged areas of brain after injury
Adult mammalian brain has potential to heal itself, says U-M scientist
http://www.eurekalert.org/pub_releases/2002-02/uomh-nsc021202.php
------------
http://www.autismtoday.com/articles/stemcellsrepair.html
      Stem Cells Help Brain Repair Itself After Stroke
     Articles >> Stem Cells Help Brain Repair Itself After Stroke
      http://www.eurekalert.org/pub_releases/2002-05/mcog-sch050202.php

I hope this type of therapy might offer brain regenerative benefits for some patients in the future.

GBYAY Anne M Breen, dx meningioma and sx 1986, 2nd sx for recurrence 2000

Anne McGinnis Breen
560 West Valle Del Oro Road
Oro Valley (Tucson) Arizona 85737-9711
Phone 520-297-6305
Fax 520-297-9442
Email: anne91547@...

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#1313 From: anne91547@...
Date: Tue Nov 11, 2003 5:39 pm
Subject: Medical drug legislation and other helpful info for patients and caregivers famnine
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Dear Friends,

Here is some general reading material about current legislative medical drug prescription action, government funding, a good article about prayer, and one for patient advocacy issues that may affect our medical future care from other websites that I read for my Dad's myeloma. I added the URL's for each one in case the underlined AOL hyperlinks do not work for your server.

Medicare Proposals Threaten Access to Care http://www.myeloma.org/myeloma/people_awareness.jsp?type=detail&id=1112
Access to cancer care and treatment is threatened by the Medicare Prescription Drug Benefit legislation currently being debated by a congressional conference committee and rules proposed by the Center for Medicare and Medicaid Services (CMS).
Can Praying For Someone Help Them Heal?http://www.financialexpress.com/fe_full_story.php?content_id=45701
Doctors—dozens of them—have been measuring the effects of prayers, meditation, hope and forgiveness on the body. (An opinion piece from the Financial Times of India.)
Patient Advocate Foundation Provides Access via Website to Real Time Case Management Inquiries. http://www.patientadvocate.org/
They can assist you with issues such as access to care, insurance problems, debt crisis. Although they do not offer direct financial assistance, they do have case management intervention and can assist or intervene on behalf of a patient. Click on the "Click to Chat Now" button when you get to their site.

National Legislative medical news http://www.npaf.org/newsletter/winter2003.pdf

GBYAY Anne

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#1314 From: "Trisha Williams" <trisha4080@...>
Date: Thu Nov 20, 2003 1:05 pm
Subject: hi! trisha4080
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Dear New Member:

As moderator of the Brainsurgery group, I would like to welcome you to our group. Our group is a little different in that we don't have a lot of "chatter". You won't find jokes or discussions of non-related subjects too often, if at all. I have been very impressed with how focused this group has been.

But, if you were to introduce yourself to the group or bring up a particular question, you would find our 80+ members are on "standby"! If you're a little shy, please feel free to write directly to me and have me post something for you as I would be glad to do so.

I welcome you to our community and hope you find what you are looking for in the way of support, information and understanding.

Welcome!

Patricia Williams, R.N.

5cm left frontal/parietal/temporal meningioma removed 5/99

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#1315 From: "Trisha Williams" <trisha4080@...>
Date: Mon Nov 24, 2003 9:10 pm
Subject: RE: hi! trisha4080
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Mark,

It sounds like you've had an ordeal... hopefully, the oral antibiotics will
clear this up for you.  You wouldn't expect that after five years!

You know, if you'd written to me about Arnold Chiari Malformation 2 years
ago, I would have had to look the diagnosis up.  As fate would have it, my
21-year-old daughter was diagnosed with it (no syrinx, did you?) 1 1/2 years
ago.  Lucky for her, she hasn't needed surgery as of yet.

When we found out about her, I found an organization, the American
Syringomyelia Alliance Project (ASAP).  We attended their conference in St.
Louis that year and learned alot about it.  You may know of them already,
but just in case you don't, their website is: www.asap4sm.org   They also
have a listserve which you can join at that website under the "Resources"
section.  We receive newsletters from them also which are quite informative.
You can sign up to receive information at the website also - I'd highly
recommend that site.

I'm also posting our correspondence to the BrainSurgery list because, even
though you didn't have a tumor per se, you most likely had the same
consequences from your condition - increased intracranial pressure and brain
surgery - and because of this, many of the issues we face from tumors would
be the same as yours.  Fear, fatigue, self perception issues, dealing with
family and other individuals, cognitive changes, etc. etc...  Also, there
may be someone else in the group who is familiar with ACM, as well.

Please stay in touch and let us know how the antibiotics turn out.  We'll
all be praying for you.

Best wishes,
Trisha Williams, R.N.
List Moderator
(no relation!)





-----Original Message-----
From: Mark Williams [mailto:fisherman134_77062@...]
Sent: Thursday, November 20, 2003 4:42 PM
To: Trisha Williams
Subject: Re: hi!


Trishia,

I am 28 and I joined because I have had some surguries
a few years ago.  In 1998 (Nov.) I had a
Sub-occipital craniotomy, duraplasty, laminectomy, top
2 vertebrae. (Arnold Chiari malformation)

I went to my family doctor today because I noticed
some pain and swelling at the scar along my neck.  IHe
told me that I have an infection under the scar, and
that is causing the swellling.  I am on some
antibiotics for 10 days and if this does not work,
they will open it back up and see what is going on.

Does anybody in the group have anything like this, or
am I a lucky duck.

Thank ya,

Mark Williams



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#1316 From: "Trisha" <trisha4080@...>
Date: Sat Nov 29, 2003 5:26 pm
Subject: My cousin's aneurysm trisha4080
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Hi all,

Maybe you have all had a similar experience...  before my craniotomy,
the only place you'd see someone having brain surgery was on that old
show, Ben Casey.  Remember there was always a beautiful woman who
would have a brain tumor and she'd wake up looking even prettier
after surgery with that beautiful white silky turban on her head??
Yeah right... that's exactly what happened to you, right?  :)

Anyway, since I had my surgery, it seems like every time I turn
around someone has a friend or relative with a brain tumor or
aneurysm or colloid cyst.  Unfortunately, it has happened again.

One of my favorite cousins was just diagnosed with an aneurysm in the
basilar arteries near the brain stem.  She is scheduled for an
angiogram on Monday morning and, as most of us were, she is very
scared.  She lives in the Phoenix area and is just the sweetest
person you could ever know.

Does anybody have anything to share about their angiogram
experiences?  When I spoke to her she seemed most frightened about
the novacaine to prepare for the incision, but I know she has alot
more she is concerned about.  I have invited her to join this group
(by email) but I will forward any words of experience or
encouragement to her and I know it will make her feel better just to
know people are praying for her.

In my search for information for her, I found a wonderful website.
It is an organization similar to TBTA but for aneurysms.  Just in
case someone else is interested in it, the link is:
http://www.bafound.org/patients.htm   I will also add it to our group
links page.

Thanks for any input and prayers!

Trisha Williams, R.N.
List Moderator

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#1317 From: Sanmich@...
Date: Sat Nov 29, 2003 1:50 pm
Subject: Re: [brain tumor] My cousin's aneurysm Sanmich@...
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Hi Trish,

Sorry to hear about your cousin. Unfortunately, I do not know much about her condition, but I will add her to my prayer list.

You mentioned that you have heard a lot lately about others being diagnosed with several different brain condition, including colloid cyst. That is what I had surgery for 17 years ago. The doctor was only able to remove the contents, but not the cyst, so I still have it. I have only heard of one other person having a colloid cyst. Do you know much about this condition?

Thanks,
Sandy Grad

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#1318 From: "Trisha Williams" <trisha4080@...>
Date: Sun Nov 30, 2003 2:02 pm
Subject: RE: [brain tumor] My cousin's aneurysm trisha4080
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Sandy -

Thanks for your note and prayers for Lisa.

I have had one co-worker friend and one online friend write to me about their diagnoses of colloid cysts. Both of them also had their cysts aspirated and the empty "sac" remains. From what I understand, this is the least invasive type of surgery and it removes the danger caused by obstruction of the cerebral spinal fluid flow thereby fixing the problem.

For those of you interested in this rare form of brain tumor, colloid cysts are smooth, round lesions formed during fetal development and are typically located at the foramen of Munro in the front section of the third ventricle. They are usually filled with a jelly-like substance as well as cholesterol crystals. These cysts usually occur in adults and account for approximately 1% of all brain tumors. Symptoms include headaches, dizziness, memory problems, double vision, and personality changes.

Although these lesions do not have a malignant potential, they are managed surgically because they tend to cause hydrocephalus by obstructing cerebrospinal fluid flow at the third ventricle. Such a scenario is life threatening and is considered a neurosurgical emergency.

Here are some links to informational websites and some excellent pictures of colloid cysts:

http://pathweb.uchc.edu/eAtlas/CNS/961.htm

http://www.neuropat.dote.hu/uj/colloid/colloid.htm

http://www.uscneurosurgery.com/glossary/c/colloid%20cyst.htm

-----Original Message-----
From: Sanmich@... [mailto:Sanmich@...]
Sent: Saturday, November 29, 2003 1:51 PM
To: BrainSurgery@yahoogroups.com
Subject: Re: [brain tumor] My cousin's aneurysm

Hi Trish,

Sorry to hear about your cousin. Unfortunately, I do not know much about her condition, but I will add her to my prayer list.

You mentioned that you have heard a lot lately about others being diagnosed with several different brain condition, including colloid cyst. That is what I had surgery for 17 years ago. The doctor was only able to remove the contents, but not the cyst, so I still have it. I have only heard of one other person having a colloid cyst. Do you know much about this condition?

Thanks,
Sandy Grad

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#1319 From: "Texan" <fortworthtexx@...>
Date: Mon Dec 1, 2003 7:24 pm
Subject: Tumor removed 1990 chances coming back? fortworthtexx
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Hi all,  I am looking for some help

I had a small low grade brain tumor successfully removed in 1990
that caused grand maul seizures.  Seizures started with my left leg
jerking and moved to grand maul seizures.

After surgury, I was successfully cured!  The tumor was completely
removed and the seizures stopped.

Ive noticed for the last month that my left thumb will twitch.
Sometimes it twiches almost all day long.  Other days it doestnt
twitch at all.  It was my leg that jerked 14 years ago, not my thumb.

I was wondering if anyone has ever had a tumor completely removed,
only to have it come back 14 years or several years later.

Any info will be GREATLY appreciated.

Thanks,
fortworthtexx

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#1320 From: anne91547@...
Date: Tue Dec 2, 2003 12:39 pm
Subject: Re: [brain tumor] Tumor removed 1990 chances coming back? famnine
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Dear M friend,

If you go have a follow-up MRI scan your question can be answered. The only way I know is to ask your doctor for an MRI scan test which can determine whether or not you have any recurrence of tumor. Annual MRI check-ups after any brain tumor removal are always a good idea to put your mind at ease.

GBYAY Anne

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#1321 From: Alan Herendich <alanherendich@...>
Date: Wed Dec 3, 2003 4:06 pm
Subject: Re: [brain tumor] Tumor removed 1990 chances coming back? alanherendich
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Hi,

I agree with Anne. I just wanted to add my encouragement to get an MRI. Although some doctors will call it a "cure" when the tumor is removed, you are at an increased risk to develope another tumor in the future. Annual MRI's are a good idea for anyone who has had even a small tumor removed. Let us know what you find out.

Alan

Texan <fortworthtexx@...> wrote:

Hi all, I am looking for some help I had a small low grade brain tumor successfully removed in 1990 that caused grand maul seizures. Seizures started with my left leg jerking and moved to grand maul seizures. After surgury, I was successfully cured! The tumor was completely removed and the seizures stopped. Ive noticed for the last month that my left thumb will twitch. Sometimes it twiches almost all day long. Other days it doestnt twitch at all. It was my leg that jerked 14 years ago, not my thumb. I was wondering if anyone has ever had a tumor completely removed, only to have it come back 14 years or several years later. Any info will be GREATLY appreciated. Thanks, fortworthtexx

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#1322 From: Camachoent@...
Date: Tue Dec 9, 2003 3:57 pm
Subject: MNG--Update Camachoent@...
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Hello mates,
It's with great sadness that I inform you of the death Jose Alvear, the 14-year-old boy who lost his battle to a very rare brain tumor on Sunday evening.   The wake will take place this evening. He was a handsome and very humble young boy from a wonderful family. It was very difficult for me to have seen him loose his hair to chemo and continue to suffer the way he did before he passed.   We now have another angel.

As for me, I also regret to inform you that the other options to surgery I was looking into were not for me. Therefore, in all likelihood, I will be facing my 7th craniotomy, possibly on the first week of January. It was a very difficult decision for me to make, but the tumor has grown 40% and doctors are not happy with that and neither am I. In addition, I developed swelling in the brain while in the hospital, which prevented them from coninueing to monitor the seizures by inducing them.   The "group" of tumors are presently located in the posterior, parietal, and occipital region. The drugs I looked into, were not going to reduce the tumor, but rather halt it and cause possible permanent side effects, and the tumor would still remain. I really don't want this thing in my head, especially if it's growing and threatening other areas (as if I had other areas left LOL!)

In the meantime, I thank you for your prayers, cards and continued support. I love you all and pray for the day we can all celebrate the victory of seeing a cure for this horrible disease. I am in good spirits and ready for the fight. All I need is back-up, (you guys and some heavy duty prayers!)
We shall overcome!
Delia

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#1323 From: "Trisha Williams" <trisha4080@...>
Date: Tue Dec 9, 2003 10:06 pm
Subject: RE: [brain tumor] MNG--Update trisha4080
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Delia -

I am so sorry to hear your news about Jose and that you have to go through this again.

I am sure I speak for all of us in saying that we are all spiritually supporting you and praying many prayers for you. You are such a strong and caring person. You're always there to lend support when someone needs it...

Please keep us informed as best you can - we'll miss your emails during your absence and will be thinking of you!

Sending you hugs and wishing you strength,

Trisha

and -----Original Message-----
From: Camachoent@... [mailto:Camachoent@...]
Sent: Tuesday, December 09, 2003 3:57 PM
To: Brainsurgery@yahoogroups.com; meningioma@...
Subject: [brain tumor] MNG--Update

Hello mates,
It's with great sadness that I inform you of the death Jose Alvear, the 14-year-old boy who lost his battle to a very rare brain tumor on Sunday evening.   The wake will take place this evening. He was a handsome and very humble young boy from a wonderful family. It was very difficult for me to have seen him loose his hair to chemo and continue to suffer the way he did before he passed.   We now have another angel.

As for me, I also regret to inform you that the other options to surgery I was looking into were not for me. Therefore, in all likelihood, I will be facing my 7th craniotomy, possibly on the first week of January. It was a very difficult decision for me to make, but the tumor has grown 40% and doctors are not happy with that and neither am I. In addition, I developed swelling in the brain while in the hospital, which prevented them from coninueing to monitor the seizures by inducing them.   The "group" of tumors are presently located in the posterior, parietal, and occipital region. The drugs I looked into, were not going to reduce the tumor, but rather halt it and cause possible permanent side effects, and the tumor would still remain. I really don't want this thing in my head, especially if it's growing and threatening other areas (as if I had other areas left LOL!)

In the meantime, I thank you for your prayers, cards and continued support. I love you all and pray for the day we can all celebrate the victory of seeing a cure for this horrible disease. I am in good spirits and ready for the fight. All I need is back-up, (you guys and some heavy duty prayers!)
We shall overcome!
Delia

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#1324 From: Kevin Keply <fortworthtexx@...>
Date: Wed Dec 10, 2003 9:40 am
Subject: RE: [brain tumor] MNG--Update fortworthtexx
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Delia,

I saw this will be your seventh surgury. I am so sorry to hear that. My prayers are with you and with your family. I will pray that you will have a full recovery and have a great long, healthy, happy life.

Can you tell me what kind of Tumor you have and what type of seizures you experienced throughout this whole ordeal? This info would be quite useful to me.

Thank you very much, and God Bless

Trisha Williams <trisha4080@...> wrote:

Delia -

I am so sorry to hear your news about Jose and that you have to go through this again.

I am sure I speak for all of us in saying that we are all spiritually supporting you and praying many prayers for you. You are such a strong and caring person. You're always there to lend support when someone needs it...

Please keep us informed as best you can - we'll miss your emails during your absence and will be thinking of you!

Sending you hugs and wishing you strength,

Trisha

and -----Original Message-----
From: Camachoent@... [mailto:Camachoent@...]
Sent: Tuesday, December 09, 2003 3:57 PM
To: Brainsurgery@yahoogroups.com; meningioma@...
Subject: [brain tumor] MNG--Update

Hello mates,
It's with great sadness that I inform you of the death Jose Alvear, the 14-year-old boy who lost his battle to a very rare brain tumor on Sunday evening.   The wake will take place this evening. He was a handsome and very humble young boy from a wonderful family. It was very difficult for me to have seen him loose his hair to chemo and continue to suffer the way he did before he passed.   We now have another angel.

As for me, I also regret to inform you that the other options to surgery I was looking into were not for me. Therefore, in all likelihood, I will be facing my 7th craniotomy, possibly on the first week of January. It was a very difficult decision for me to make, but the tumor has grown 40% and doctors are not happy with that and neither am I. In addition, I developed swelling in the brain while in the hospital, which prevented them from coninueing to monitor the seizures by inducing them.   The "group" of tumors are presently located in the posterior, parietal, and occipital region. The drugs I looked into, were not going to reduce the tumor, but rather halt it and cause possible permanent side effects, and the tumor would still remain. I really don't want this thing in my head, especially if it's growing and threatening other areas (as if I had other areas left LOL!)

In the meantime, I thank you for your prayers, cards and continued support. I love you all and pray for the day we can all celebrate the victory of seeing a cure for this horrible disease. I am in good spirits and ready for the fight. All I need is back-up, (you guys and some heavy duty prayers!)
We shall overcome!
Delia

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#1325 From: PurpleJule@...
Date: Thu Dec 11, 2003 2:06 pm
Subject: Re: MNG--Update-to Delia purplejule57
Send Email

Dear Delia,
   I am so sorry to hear about Jose!  He is so young.
And I cannot imagine you are having to go through a 7th surgery!  I have only
gone
through 1 so my prayers are certainly going to be with you.
   I am awaiting results on my MRI to tell if my tumor is coming back after 5
years.
I was told I would probably be given radiation treatment rather than surgery.
   But I did want to let you know my prayers are with you Delia.

Julie in Kansas

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#1326 From: "Trisha Williams" <trisha4080@...>
Date: Tue Dec 16, 2003 5:08 pm
Subject: Merry Christmas trisha4080
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Dear Members,

I just wanted to take a moment and wish each and every one of you a
fantastic, stupendous, monumental, blissful, happy, content, loving,
fun-filled, harmonious, memorable holiday season and a healthy, blessed new
year!  (that was my word-finding exercise for the day)

This group, unlike many groups in society, is truly lucky in one very
special way.   Namely, time with family at the holidays and the love we
share at this time of year and always is something we truly know how to
appreciate.  The perspective we have gained from our experiences is, in my
opinion, our "consolation prize" for the difficult times we have been
through.

Enjoy your holidays as you remember how truly lucky we are to be able to!

xoxo
Trisha Williams, R.N.
List Moderator


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#1327 From: "Sheryl" <massagebysher@...>
Date: Thu Jan 1, 2004 9:01 pm
Subject: Surgery on 1/27 massagebysher
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Hello everyone! About a year ago my tumor was discovered. We watched
it very closely & over a year's time it grew from 1.3cm to 1.7cm. Not
much growth, but a concern nonetheless.  My neurosurgeon thinks it
might be a ganglioneuroma & it is in my 3rd ventricle. I opted to
have surgery before it grew any further & surgery is scheduled for
Jan 27th. I've never even had general anesthesia before. My NS
explained the procedure to me in detail & I have a lot of medical
background. I've been a vet tech for 20 years & am also a massage
therapist.  Is there anything to expect, ask about, etc. that the NS
might not have mentioned? I'll be happy to answer any questions
regarding my condition, health, etc.    Thanks!
Sheryl

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#1328 From: Kevin Keply <fortworthtexx@...>
Date: Thu Jan 1, 2004 10:31 pm
Subject: Re: [brain tumor] Surgery on 1/27 fortworthtexx
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I had brain surgury tumor removal 14 years ago. I dont know anything about ventracles, but I can tell you my surgury went fine.

Looking back, it was not nearly as bad as I thought it was going to be. You just have to make up your mind and be strong and rely on the Lord. Thats what I did, and my recovery went fast. I had a headache the first day that seemed bad, but I tried to opt to not have the tylenol. That was stupid. I gave in and took the tylenol.

With my head all bandaged up, it seemed worse that what it really was. I am in perfect health today tumor free.

Im so glad I had the surgury! My life has changed for the better. Remember that with God, All things are possible, and he wants nothing but the best for his children.

Trust me. each day after surgury you will get better and better and better. Each Day!

Sheryl <massagebysher@...> wrote:

Hello everyone! About a year ago my tumor was discovered. We watched it very closely & over a year's time it grew from 1.3cm to 1.7cm. Not much growth, but a concern nonetheless. My neurosurgeon thinks it might be a ganglioneuroma & it is in my 3rd ventricle. I opted to have surgery before it grew any further & surgery is scheduled for Jan 27th. I've never even had general anesthesia before. My NS explained the procedure to me in detail & I have a lot of medical background. I've been a vet tech for 20 years & am also a massage therapist. Is there anything to expect, ask about, etc. that the NS might not have mentioned? I'll be happy to answer any questions regarding my condition, health, etc. Thanks! Sheryl

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#1329 From: "Trisha Williams" <trisha4080@...>
Date: Fri Jan 2, 2004 4:31 pm
Subject: RE: [brain tumor] Surgery on 1/27 trisha4080
Send Email

Wow... your email really hit me because it is for exactly this type of question that this website/maillist was started.

In some ways, the sudden nature of the discovery and surgery for my tumor was a blessing. I didn't have to watch and wait and I had very little time to anticipate what may be ahead. But, you have a great advantage as well. You have time to educate yourself.

We have done several polls at our website (view them all at http://health.groups.yahoo.com/group/BrainSurgery/polls ) and the results of some are shown below:

Do you feel you were adequately informed of what may lie ahead after your recovery?

Absolutely	2	6.90%
I was somewhat informed	8	27.59%
I was vaguely informed	10	34.48%
I had absolutely no information of what was to come	6	20.69%
Due to extenuating circumstances (stroke, unconsciousness, etc.) my doctor had no way to explain this information to me.	3	10.34%

The above poll was sad to me because it shows many people were uninformed about what was to come. So, now you're one step up in this area! ________________________________________________________________________

Select up to three services which would have been of significant value to you in your recovery period after treatment and/or surgery. Check "no services needed" if you feel that is the case.

No services needed	1	1.33%
Someone to make therapy and/or doctors' appointments for me	4	5.33%
Someone to accompany me to therapy and/or doctors' visits for explanation and reminders of what was said	3	4.00%
Transportation to visits	2	2.67%
Assistance in the home (cleaning, shopping, preparation of meals, chores)	5	6.67%
Assistance with personal care (dressing, bathing, feeding, etc.)	0	0.00%
Education of the patient	8	10.67%
Education of the family	6	8.00%
Information about resources such as hotlines, mail lists, etc.	12	16.00%
Written information about compensation techniques	7	9.33%
Being able to talk to someone who had or has a brain tumor	12	16.00%
Just having someone listen to how I felt	9	12.00%
Having a written schedule prepared for me (med times, appointments, daily tasks, etc.)	1	1.33%
Having someone keep a diary of my progress	1	1.33%
Someone to pray with me	2	2.67%
Someone to read to me	0	0.00%
Something else (SEND POST TO SITE WITH EXPLANATION)	2	2.67%

This poll revealed the importance of educating yourself and having emotional support - they came in first. I am so glad you have posted your question. Now you'll have some resources.

Go to our website: http://health.groups.yahoo.com/group/BrainSurgery/ and then go to the "links" section. Here are a few of the sites you will find there which are very informative: http://virtualtrials.com/index.cfm and http://www.tbts.org and http://www.braintumor.org/ .

Also, where do you live? Since most of us did wish we had someone to talk to that would understand what we were experiencing, maybe someone lives in your area. Another common wish was just having someone to listen to how we were feeling as we recovered. It may be good to identify a friend who will support you in this way and to prepare them to be there to listen. Maybe you could give him or her the information about this website and they could keep in touch with us for some support and answers to questions that may arise for them.

There is so much to say, I don't know where to start. Mostly, remember that your experience may differ from mine in that the area of the brain affected is different. One thing that I find to be common is people expected to be back to "normal" alot quicker than was actually the case. It takes time to heal and you need to be easy on yourself. Take care of yourself and be good to yourself - if company is too much for you when you get home, limit the time you spend with others. Don't be afraid to ask for help if you need it. Write all your questions down and ask the doctor to explain. Examples, what might I expect after my surgery? Will I be on steroids? Will I be able to return to work within ?? weeks? Do I need someone to care for me temporarily after my surgery? What should I expect after the surgery?

I'm sure there are many other questions, this is just to name a few. Maybe some other members will have more suggestions to add for you.

As for me, I am not the same as before, I am better. I appreciate the smallest things and don't let the big things bother me as much. I can clear my mind for meditation easier than ever before because I am not so bogged down with the "should I have, why did I, maybe I should" thoughts. I have to say, I like myself and my life so much better than ever before. On that note, I'll show you one more poll. You can view all the polls at the website:

In what way has a brain tumor impacted your life in a most positive way?

Newfound appreciation for life	5	20.00%
spiritual growth	8	32.00%
Taking my time to really enjoy family and friends	5	20.00%
Learning my/our own limits	7	28.00%

Please stay in touch and let us know how you are feeling. I myself will be out of town from Jan 3 through Jan 10 but there are almost 100 people in here so you are never far from support.

Best of luck and good health to you - the actual surgery experience was not nearly as bad as I would have thought. The recovery was the most difficult part, but with family/friends, emotional support and information, it can be easier for you. Just take your time and don't rush yourself to do too much before you are ready.

Trisha Williams, R.N.

List Moderator

5cm left frontal/temporal/parietal meningioma removed May 1999

Still improving day by day

-----Original Message-----
From: Sheryl [mailto:massagebysher@...]
Sent: Thursday, January 01, 2004 4:01 PM
To: BrainSurgery@yahoogroups.com
Subject: [brain tumor] Surgery on 1/27

Hello everyone! About a year ago my tumor was discovered. We watched it very closely & over a year's time it grew from 1.3cm to 1.7cm. Not much growth, but a concern nonetheless. My neurosurgeon thinks it might be a ganglioneuroma & it is in my 3rd ventricle. I opted to have surgery before it grew any further & surgery is scheduled for Jan 27th. I've never even had general anesthesia before. My NS explained the procedure to me in detail & I have a lot of medical background. I've been a vet tech for 20 years & am also a massage therapist. Is there anything to expect, ask about, etc. that the NS might not have mentioned? I'll be happy to answer any questions regarding my condition, health, etc. Thanks! Sheryl

***IF YOU HAVE NOT ALREADY DONE SO, STOP BY AND COMPLETE THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 429*** Community email addresses: Post message: BrainSurgery@... Subscribe: http://groups.yahoo.com/group/BrainSurgery Unsubscribe: Trisha4080@... List owner: Trisha4080@... Shortcut URL to this page: http://www.egroups.com/community/BrainSurgery

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Reply | Messages in this Topic (4)

#1330 From: Sheryl Roberts <massagebysher@...>
Date: Sun Jan 4, 2004 6:00 pm
Subject: Re: [brain tumor] Digest Number 564 massagebysher
Send Email

Thanks Trisha. I live in Salem County NJ. It would be great if there was someone in my area from this group to talk to in more detail. My husband is not handling it as well as I'd like. I seem to be the one supporting him instead of the other way around. I have to keep it together so he doesn't get upset. His Mom died a few months ago when she went under anesthesia for heart surgery. I explained to him that she was so very sick, while I am healthy. Looking forward to hearing from anyone.

I will be away from Jan 8th-14th. We're taking a trip to Disney! Woohoo!

Thanks, Sheryl

BrainSurgery@yahoogroups.com wrote:

There is 1 message in this issue.

Topics in this digest:

1. RE: Surgery on 1/27
From: "Trisha Williams"

________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Fri, 2 Jan 2004 11:31:22 -0500
From: "Trisha Williams"
Subject: RE: Surgery on 1/27

Wow... your email really hit me because it is for exactly this type of
question that this website/maillist was started.

In some ways, the sudden nature of the discovery and surgery for my tumor
was a blessing. I didn't have to watch and wait and I had very little time
to anticipate what may be ahead. But, you have a great advantage as well.
You have time to educate yourself.

We have done several polls at our website (view them all at
http://health.groups.yahoo.com/group/BrainSurgery/polls ) and the results
of some are shown below:

Do you feel you were adequately informed of what may lie ahead after your
recovery?
Absolutely 2 6.90%
I was somewhat informed 8 27.59%
I was vaguely informed 10 34.48%
I had absolutely no information of what was to come 6 20.69%
Due to extenuating circumstances (stroke, unconsciousness, etc.) my
doctor had no way to explain this information to me. 3 10.34%

The above poll was sad to me because it shows many people were uninformed
about what was to come. So, now you're one step up in this area!
________________________________________________________________________

Select up to three services which would have been of significant value to
you in your recovery period after treatment and/or surgery. Check "no
services needed" if you feel that is the case.
No services needed 1 1.33%
Someone to make therapy and/or doctors' appointments for me 4 5.33%
Someone to accompany me to therapy and/or doctors' visits for
explanation and reminders of what was said 3 4.00%
Transportation to visits 2 2.67%
Assistance in the home (cleaning, shopping, preparation of meals,
chores) 5 6.67%
Assistance with personal care (dressing, bathing, feeding, etc.) 0
0.00%
Education of the patient 8 10.67%
Education of the family 6 8.00%
Information about resources such as hotlines, mail lists, etc. 12
16.00%
Written information about compensation techniques 7 9.33%
Being able to talk to someone who had or has a brain tumor 12 16.00%
Just having someone listen to how I felt 9 12.00%
Having a written schedule prepared for me (med times, appointments,
daily tasks, etc.) 1 1.33%
Having someone keep a diary of my progress 1 1.33%
Someone to pray with me 2 2.67%
Someone to read to me 0 0.00%
Something else (SEND POST TO SITE WITH EXPLANATION) 2 2.67%

This poll revealed the importance of educating yourself and having emotional
support - they came in first. I am so glad you have posted your question.
Now you'll have some resources.

Go to our website: http://health.groups.yahoo.com/group/BrainSurgery/ and
then go to the "links" section. Here are a few of the sites you will find
there which are very informative: http://virtualtrials.com/index.cfm and
http://www.tbts.org and http://www.braintumor.org/ .

Also, where do you live? Since most of us did wish we had someone to talk
to that would understand what we were experiencing, maybe someone lives in
your area. Another common wish was just having someone to listen to how we
were feeling as we recovered. It may be good to identify a friend who will
support you in this way and to prepare them to be there to listen. Maybe
you could give him or her the information about this website and they could
keep in touch with us for some support and answers to questions that may
arise for them.

There is so much to say, I don't know where to start. Mostly, remember that
your experience may differ from mine in that the area of the brain affected
is different. One thing that I find to be common is people expected to be
back to "normal" alot quicker than was actually the case. It takes time to
heal and you need to be easy on yourself. Take care of yourself and be good
to yourself - if company is too much for you when you get home, limit the
time you spend with others. Don't be afraid to ask for help if you need it.
Write all your questions down and ask the doctor to explain. Examples, what
might I expect after my surgery? Will I be on steroids? Will I be able to
return to work within ?? weeks? Do I need someone to care for me
temporarily after my surgery? What should I expect after the surgery?

I'm sure there are many other questions, this is just to name a few. Maybe
some other members will have more suggestions to add for you.

As for me, I am not the same as before, I am better. I appreciate the
smallest things and don't let the big things bother me as much. I can clear
my mind for meditation easier than ever before because I am not so bogged
down with the "should I have, why did I, maybe I should" thoughts. I have
to say, I like myself and my life so much better than ever before. On that
note, I'll show you one more poll. You can view all the polls at the
website:

In what way has a brain tumor impacted your life in a most positive way?
Newfound appreciation for life 5 20.00%
spiritual growth 8 32.00%
Taking my time to really enjoy family and friends 5 20.00%
Learning my/our own limits 7 28.00%

Please stay in touch and let us know how you are feeling. I myself will be
out of town from Jan 3 through Jan 10 but there are almost 100 people in
here so you are never far from support.

Best of luck and good health to you - the actual surgery experience was not
nearly as bad as I would have thought. The recovery was the most difficult
part, but with family/friends, emotional support and information, it can be
easier for you. Just take your time and don't rush yourself to do too much
before you are ready.

Trisha Williams, R.N.
List Moderator
5cm left frontal/temporal/parietal meningioma removed May 1999
Still improving day by day

-----Original Message-----
From: Sheryl [mailto:massagebysher@...]
Sent: Thursday, January 01, 2004 4:01 PM
To: BrainSurgery@yahoogroups.com
Subject: [brain tumor] Surgery on 1/27

Hello everyone! About a year ago my tumor was discovered. We watched
it very closely & over a year's time it grew from 1.3cm to 1.7cm. Not
much growth, but a concern nonetheless. My neurosurgeon thinks it
might be a ganglioneuroma & it is in my 3rd ventricle. I opted to
have surgery before it grew any further & surgery is scheduled for
Jan 27th. I've never even had general anesthesia before. My NS
explained the procedure to me in detail & I have a lot of medical
background. I've been a vet tech for 20 years & am also a massage
therapist. Is there anything to expect, ask about, etc. that the NS
might not have mentioned? I'll be happy to answer any questions
regarding my condition, health, etc. Thanks!
Sheryl

***IF YOU HAVE NOT ALREADY DONE SO, STOP BY AND COMPLETE THE PATIENT CARE
QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 429***

Community email addresses:
Post message: BrainSurgery@...
Subscribe: http://groups.yahoo.com/group/BrainSurgery
Unsubscribe: Trisha4080@...
List owner: Trisha4080@...

Shortcut URL to this page:
http://www.egroups.com/community/BrainSurgery

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b.. To unsubscribe from this group, send an email to:
BrainSurgery-unsubscribe@yahoogroups.com

c.. Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.

[This message contained attachments]

________________________________________________________________________
________________________________________________________________________

***IF YOU HAVE NOT ALREADY DONE SO, STOP BY AND COMPLETE THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 429***

Community email addresses:
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Subscribe: http://groups.yahoo.com/group/BrainSurgery
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Reply | Messages in this Topic (1)

#1331 From: Sanmich@...
Date: Tue Jan 6, 2004 6:43 pm
Subject: Re: [brain tumor] Surgery on 1/27 Sanmich@...
Send Email

Hi Sheryl,

I had/have a colloid cyst in the 3rd ventricle. Had surgery in 1986 to remove it, but the doc decided to drain it instead. He felt removing it would put me in danger because of it's location. That type of surgery has improved so much since 1986, I've heard. Are you having any symptoms? I only had minor symptoms prior to surgery. Good luck and let us know how you are doing.

Sandy

Reply | Messages in this Topic (4)

#1332 From: Sheryl Roberts <massagebysher@...>
Date: Thu Jan 8, 2004 1:27 am
Subject: Re: [brain tumor] Digest Number 566 massagebysher
Send Email

Hi Sandy,

No, I have no symptoms. The new chiropractic neurologist I started seeing a year ago recommended I have an MRI to rule out a 'hard lesion' (don't you love the way they get around the word tumor?) as the cause for my migraines. The tumor was discovered. Both neurosurgeons I saw don't believe it is the cause of my headaches. I'm having it removed because there was a small amount of growth & I figure, better have it out now while it's small, then wait & have it causing symptoms, bigger & more difficult to remove. He's going to do a small craniotomy & go in with a scope to get a sample for biopsy & remove the rest. He thinks it may be a ganglioneuroma, a rare, slow-growing, usually benign tumor. He also said: "You never know, your migraines might go away once it is removed." I guess I'll find out soon enough.

Sheryl

BrainSurgery@yahoogroups.com wrote:

Date: Tue, 6 Jan 2004 18:43:00 EST
From: Sanmich@...
Subject: Re: Surgery on 1/27

Hi Sheryl,

I had/have a colloid cyst in the 3rd ventricle. Had surgery in 1986 to remove
it, but the doc decided to drain it instead. He felt removing it would put me
in danger because of it's location. That type of surgery has improved so much
since 1986, I've heard. Are you having any symptoms? I only had minor
symptoms prior to surgery. Good luck and let us know how you are doing.

Sandy

[This message contained attachments]

________________________________________________________________________
________________________________________________________________________

***IF YOU HAVE NOT ALREADY DONE SO, STOP BY AND COMPLETE THE PATIENT CARE QUESTIONNAIRE CONTAINED IN MESSAGE NUMBER 429***

Community email addresses:
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Subscribe: http://groups.yahoo.com/group/BrainSurgery
Unsubscribe: Trisha4080@...
List owner: Trisha4080@...

Shortcut URL to this page:
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------------------------------------------------------------------------
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Reply | Messages in this Topic (5)

#1333 From: Sanmich@...
Date: Fri Jan 9, 2004 7:10 pm
Subject: Re: [brain tumor] Digest Number 566 Sanmich@...
Send Email

Hi Sheryl,

I'm glad to hear that this particular tumor is usually benign. That's what I was told about the colloid cyst. Where in the brain is yours located.

Sandy

Reply | Messages in this Topic (5)

#1334 From: anne91547@...
Date: Mon Jan 12, 2004 5:58 am
Subject: Contact senators about brain injury and funding issues from Anne Breen famnine
Send Email

Please post this BRAINY NEWS announcement on any other websites you belong to; especially Mothers Against Drunk Drivers or highway safety and auto safety, gun control, and medical websites for brain disease, brain injury, brain tumors, stroke and neuro-rehabilitation, etc. to urge our Senators to vote for the Consolidated Appropriations Bill for fiscal year 2004 when it is considered by the Senate beginning on January 20, 2004 and ending on January 31, 2004.

(Please use any or all of the following text in your emails and newsletters and add your own issues) Traumatic Brain Injury Act go to http://capwiz.com/bia/home/ and for brain tumor facts and legislation go to http://www.nabraintumor.org/facts.html GBYAY Anne Breen

This memo provides background regarding the current status of FY 2004 appropriations bills and identifies your opportunities for various grassroots action in mid-January 2004.

Background
Congress has completed action and President Bush has signed into law six of the thirteen annual appropriations bills, including Department of Defense, Energy and Water, Homeland Security, Interior, Legislative Branch, and Military Construction. The remaining seven bills have been combined into an omnibus bill, the Consolidated Appropriations Bill for FY 2004, H.R. 2673. The seven bills that are incorporated into this omnibus bill are Agriculture, Commerce/ Justice/State, District of Columbia, Foreign Operations, Labor/ Health and Human Services/Education, Transportation/Treasury, and Veterans Affairs/ Housing and Urban Development.

The fiscal year begins on October 1, and Congress should complete action on the new year’s funding bills by the September 30 of the prior year. However, in recent years it has become a routine matter for at least one – and sometimes several – of the 13 appropriations bills to be stalled in Congress. However, the failure this year to complete action on seven of the 13 bills is fairly unusual. In the circumstances where individual bills have not been approved, bills may have been approved by the House and Senate, and differences between the houses may even have been resolved. A disagreement on a single issue, or on several issues, may prevent any final action.

In circumstances where action on a full-year, permanent bill is not completed by October 1, Congress provides stop-gap funding through a Continuing Resolution. As a general rule, a Continuing Resolution maintains funding for federal departments and agencies at the previous year’s funding level. According to this practice, a Continuing Resolution for FY 2004 would set funding at FY 2003 levels. Those agencies whose permanent appropriations bills have not been approved are currently being funded by the 7th Continuing Resolution of FY 2004. The 7th Continuing Resolution expires on January 31, 2004, by which time Congress hopes to complete action on the Consolidated Appropriations bill, which will provide funding for the remainder of the fiscal year, or until September 30, 2004.

Why Are the Individual Appropriations Bills Stalled?
There are many different reasons for Congressional failure to approve the remaining 7 permanent appropriations bills. Action on the Labor/Health and Human Services/Education bill was initially stymied due to a disagreement regarding new Department of Labor rules on overtime pay, although now there are additional areas of disagreement. For each of the bills for which there has been no action, there may be one or several issues preventing final approval.

Why Is It Important to Pass the Consolidated Appropriations Bill HR 2673?
The Consolidated Appropriations Bill incorporates conference agreements on the seven individual bills identified above. In the case of the Labor/Health and Human Services/Education bill, the conferees had reached agreement to provide an increase of $835 million, including approximately 3%, for the National Institutes of Health, and a modest increase in funding for the Centers for Disease Control and Prevention and the TBI Act. Although these increases are more limited than we might have hoped, they are obviously more advantageous than a total freeze in funding increases. The conference report on the Consolidated Appropriations Bill also clarifies that the language included in the relevant House and Senate reports will be considered to be in effect. That means that the report language on the TBI Act, the brain tumor research and the cancer registry program that was included in the House and Senate reports will be in effect.

If the Senate does not approve the Consolidated Appropriations Bill, the fallback position will be a Continuing Resolution that will most likely limit FY 2004 spending at previous FY 2003 levels, allowing no increase for inflation or even the increasing numbers of brain injury survivors of all ages. This course of inaction would mean that the modest appropriations increases for many critical health rehabilitation programs including the TBI Act and brain disease research will be frozen in time inspite of a "silent epidemic" of brain damage among our own citzens and people of all ages.

In the last several weeks, Democrats and Republicans have leveled a number of different charges at each other about the weaknesses of the Consolidated Appropriations Bill. Some Democrats maintain that the level of funding for health and education is still too low and that the National Institute of Health (NIH) is receiving too small an increase in appropriations. Some conservative Republicans maintain that the spending bill is too large and should be rejected for that reason alone. And media commentators of all political stripes have criticized the bill for the amount of “pork” spending it may include.

It is the conclusion of the North American Brain Tumor Coalition and the Brain Injury Association of America that despite the shortcomings of the Consolidated Appropriations Bill HR 2673, it is important for the Congress to pass it and President Bush to sign it into law. Among the key issues for brain tumors in this bill is language asking the NIH to set up a brain tumor tissue bank and the additional funding needed for the TBI Act in 2004.

It is very easy to find addresses for Members of Congress on www.congress.org,   Attached is a letter endorsing action on the bill. This draft can be personalized and mailed or faxed to our Senators. It can also serve as a point of departure for a phone conversation with their staffers.
.

--------------------------------------

DRAFT LETTER TO OUR SENATORS URGING A “YES” VOTE ON THE
APPROPRIATIONS BILL HR 2673

Dear Senator    :
         I am writing on behalf of all traumatic and acquired brain injury survivors and their families and friends asking you not to further restrict the Health and Human Services educational programming, social awareness, therapy, community support and rehabilitation programs they need.   (Add any personal comments here)
         I want to urge you to vote “yes” when the Consolidated Appropriations Bill for FY 2004, H.R. 2673, is considered by the Senate at the end of January 2004. It is very important to the entire TBI and brain tumor community that you approve a permanent, full-year appropriations bill for Health and Human Services/Education that includes modest funding increases for many vital brain injury community health programs.
         Traumatic Brain Injury (TBI) and brain tumor research (NINDS) supported by the National Institutes of Health (NIH) and traumatic brain injury and brain tumor surveillance activities supported by the Centers for Disease Control and Prevention (CDC), Labor/Health Resources and Services Administration State Grants and Protection and Advocacy programs (HRSA) are critical elements of our ongoing effort to understand brain injury, accelerate the development of new treatments and to protect, advocate and rehabilitate those suffering from brain injury and their families. The Appropriations Committees of both Houses have recommended that these agencies receive a boost in funding in FY 2004, and I think that is federal money well spent for new medical treatments, ongoing community health care service programs to address the daily secondary permanent disability and caregiver issues that must be faced after brain injury.
         I urge your favorable vote on H.R. 2673. If this bill is not enacted, I am concerned that funding for life-saving health and neuro-rehabilitation programs will remain at FY 2003 levels and that critical neurological research opportunities may not be funded. Your support for millions of citizens with serious brain injury from auto accidents, violence and many life-threatening brain illnesses is appreciated. I look forward to your vote of approval for H.R. 2673.

Sincerely

GBYAY

Anne McGinnis Breen (a longterm recurrent meningioma brain tumor survivor)
Email: anne91547@...

Please include your full name and address

GBYAY Anne

Reply | Messages in this Topic (1)

#1335 From: anne91547@...
Date: Wed Jan 14, 2004 5:13 pm
Subject: I STRONGLY URGE you to contact your Senator about HR 2673 BEFORE Jan 21 famnine
Send Email

Dear Brain Activists,

We (NABTC, our lawyer, Morgan, etc and I) wrote to urge your support for HR 2673, the Consolidated Appropriations Bill, which includes funding for all Health and Human Services programs, including TBI, NIH and CDC. The House passed that bill in December and the House members who passed it are as frustrated as we are that the Senate failed to take action at the same time. Although there are sufficient votes to pass the bill in the Senate, there are not sufficient votes to stop a filibuster against it and hence it is stalled and will be stalled again.

Unfortunately, my Senator McCain of AZ is one of those who have announced their opposition to its passage, so I would suggest you contact his office

Web Site: mccain.senate.gov
E-mail: Contact Via 'Web Form.'

Washington Office:
241 Russell Senate Office Building
Washington, D.C. 20510-0303
Phone: (202) 224-2235
Fax: (202) 228-2862

Main District Office:
2400 E. Arizona Biltmore Circle, #1150
Phoenix, AZ 85016
Phone: (602) 952-2410
Fax: (602) 952-8702
John_McCain@...

Please make your views known in addition to contacting your own senators www.congress.org to express your concerns about passing the bill and stopping the filibuster. No further action by the House is required, unless the Senate should decide to send it back to conference and start the process all over again. Ugh! Without passage of the bill, scores of federal agencies covered by the seven bills lumped into the Consolidated Bill will be forced to operate under a continuing resolution at 2003 spending levels, which means less funds and no new programs for all of us despite our increasing needs for brain injury research, a brain tumor tissue bank and other brain disease studies and TBI surveillance.

Once again, I strongly urge you to contact your Senators and Senator McCain's office BEFORE 21 January, the date the bill will be brought up for consideration and encourage your senator to help us get the crucial (60) sixty votes to stop a filibuster.

GBYAY

Anne McGinnis Breen, brain tumor survivor for 18 years and two craniotomies later
NCI CARRA member, BIAAZ Board member
560 West Valle Del Oro Road
Oro Valley, (Tucson) Arizona 85737-9711
Phone 520-297-6305
Fax 520-297-9442
Email Anne91547@...

Reply | Messages in this Topic (1)

#1336 From: bilovsky@...
Date: Wed Jan 14, 2004 9:31 pm
Subject: We Can Effect Our Goverment bilovsky@...
Send Email

Dear Friends of our Brain Tumor Community,
This email is to urge you to phone the offices of your Senator urging that they pass the Consolidated Appropriations Bill for FY 2004, H.R. 2673, is considered by the Senate and tentatively scheduled on January 20, 2004. This bill is critical for our brain tumor committee. We have very little time as this comes up for a vote next Tuesday, January 20th.

If you belong to other brain tumor List Servers or have other friends to our community please forward this email on to them.

If you need phone numbers for you Senators' offices either in DC or locally send me an email with the state you live in and I will send back the appropriate phone numbers.

Below is a sample letter. If you choose to send a letter, fax it to the offices. However, we learned during the campaign for the Benign Brain Tumor Cancer Registries Amendment Act that phone calls are by far the most effective technique. We would not have passed this Act without such phone calls. We can do it again.

Here a sample letter (it also serves to help you on a phone call):
January 14, 2004

Dear Senator

I am writing on behalf of brain tumor survivors and their families and friends to urge that you vote "yes" when the Consolidated Appropriations Bill for FY 2004, H.R. 2673, is considered by the Senate and tentatively scheduled on January 20, 2004. It is very important to the brain tumor community that the Congress approves a permanent, full-year appropriations bill that includes modest funding increases for vital health programs.

Brain tumor research supported by the National Institutes of Health (NIH) and brain tumor surveillance activities supported by the Centers for Disease Control and Prevention (CDC) are critical elements in our ongoing effort to understand brain tumors and to accelerate the development of new treatments for them. For example, funding for Public Law 107-260, the Benign Brain Tumor Cancer Registries Amendment Act, which was passed by Congress in 2002, will enable full implementation of the collection of all primary brain tumors by state cancer registries beginning this January 2004. Every victim of a brain tumor will now be counted! The Appropriations Committees have recommended that these agencies receive a boost in funding in FY 2004, and we think that federal money is well spent on health research.

We urge your favorable vote on H.R. 2673. If this bill is not enacted, we are concerned that funding for life-saving health programs will remain at FY 2003 levels, the Benign Brain Tumor Cancer Registries Amendment Act will not be fully funded, and important research opportunities may not be funded.

Your support for brain tumor patients and others with serious and life-threatening illnesses is appreciated. We look forward to your "yes" vote for H.R. 2673.

Yours truly,

Thanks for your help,
Lloyd Morgan
Brain tumor survivor
Chief Cheerleader, Benign Brain Tumor Cancer Registry Amendment Act

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#1337 From: "Sheryl Roberts" <massagebysher@...>
Date: Thu Jan 15, 2004 2:27 pm
Subject: Re: [brain tumor] Digest Number 566 massagebysher
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--- In BrainSurgery@yahoogroups.com, Sanmich@a... wrote:
> Hi Sheryl,
>
> I'm glad to hear that this particular tumor is usually benign.
That's what I
> was told about the colloid cyst. Where in the brain is yours
located.
>
> Sandy

Hi Sandy,

My tumor is located in the 3rd ventricle. It's sitting on the bottom
of the ventricle, on the membrane just above the area of the brain
that deals with memory, emotion & personality. Since it doesn't seem
to be invading the brain tissue itself, my NS said it should be
fairly easy to remove it completely. He recently performed surgery on
a man who had almost the same thing, but in the brain tissue right
under where mine is. He is doing fine. Makes me feel better! Right
now I'm just starting all the pre-sugical testing. Today I have a
chest x-ray. Tomorrow I'm getting bloodwork, an EKG & a physical
exam. Next Friday I have an MRI. Tuesday the 27th is surgery.
  Oh yeah... tomorrow I'm getting a massage!

Sheryl

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#1338 From: Sanmich@...
Date: Thu Jan 15, 2004 2:27 pm
Subject: Re: [brain tumor] Digest Number 566 Sanmich@...
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Hi Sheryl,

Sounds like your tumor is located in the same area where my cyst is. From what I have heard and read the procedure used today is so more advanced and accurate from when I had my surgery in 1986, so I am sure your tumor will be easily removed without any problems. Even though my doc decided to drain my cyst instead of removing it was probably a good thing back then because the procedure wasn't as sophisticated. Although I still have this thing in my head now I feel lucky that I have not had any problems (knock on wood!) and no complications after surgery. I have a good feeling that your surgery will be fine. Keep us posted and enjoy that massage!

Sandy

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#1339 From: Sidbeinart@...
Date: Thu Jan 15, 2004 3:02 pm
Subject: Re: [brain tumor] Digest Number 566 Sidbeinart@...
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How do I unsubscribe? sid beinart@...

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#1340 From: BrainSurgery@yahoogroups.com
Date: Thu Jan 15, 2004 9:18 pm
Subject: New poll for BrainSurgery BrainSurgery@yahoogroups.com
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Enter your vote today!  A new poll has been created for the
BrainSurgery group:

How many of you would be interested in
a weekly poll?  We could cover all
sorts of topics from emotional issues
to physical problems to recovery to...
too many to list!  Select one answer:

   o Yes, I would like to participate in more polls
   o No, I am not interested in polls
   o I am not sure what the polls are


To vote, please visit the following web page:

http://groups.yahoo.com/group/BrainSurgery/surveys?id=1171025

Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the Yahoo! Groups
web site listed above.

Thanks!

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#1341 From: "Trisha" <trisha4080@...>
Date: Thu Jan 15, 2004 9:26 pm
Subject: Polls trisha4080
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As many of you know, there are several open polls on our website.  I
have just posted a poll to see how you all feel about starting up
regular polling again.

This feature of our website, where we vote on different topics and
are able to see how our answers compare to others', was very popular
back when we were doing it.  Unfortunately, between work and home, I
was unable to keep up with it adequately, and it fell by the wayside.

But, now that I'm retired...  !!!  I definitely have the time.

So, the new poll is out re: "would you like to see more polls?"

In addition, I will be concluding many of the old polls to see what
the overall results are.  I believe each of you will receive a
summary of the outcome for each of these as it is closed.  I plan on
keeping a record of these and seeing what kind of conclusions can be
drawn from them.  I will keep you updated as I progress on this.

We'll see what happens... if enough of us would like to do the polls,
I'm sure up for it!

Happy New Year to everyone - may 2004 be filled with much happiness
and good health for all of you!!  I am looking forward to spending
much more time on BrainSurgery@yahoo now that things are settling
down for me in my new retired state.

Take care, everyone,

Trisha

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