I would like to thank each and every one who responded to my message.
It always helps to hear from those who have had like experiences. I wish you all
well. Keep me in your thoughts as I will keep you in mine.

Yes the condition is permanent unfortunatley. I was told by two neuro's to look
into "deep brain stimulation" at cleveland clinic too "sci -fi"  for me and no
guarantee it will even work and maybe more pain than I have now. SoI guess I am
scared. A little bit about my surgeries 1st one somehow got banged in the head
and required  7 more stitches on the other side of my surgery [ was told by the
surgeon i jumped up during coming out of anthes] . required a spinal fusion 6
months later for a slipped disc [no problems with this before the surgery] Then
when I had my other one removed [on my optic nerve] the surgeon nicked a nerve
and I am left with pain 24-7 [facial neuropathy]
I no if someone else told me all this I would say she just some crazy old lady
[59yrs old] but i know it happened I was there .  Thanks again for the vent .
Kathy



________________________________
From: Meg Kolodick <meg_kolodick@...>
To: meningioma@yahoogroups.com
Sent: Mon, November 30, 2009 11:24:07 PM
Subject: Re: [meningioma] angry and cross eyes


Kathy,

  You're not going on and on! You are being generous enough to share your
experience, good and bad. I'm sorry you are still in pain. Do your doctors think
that is a permanent condition? Is it the result of a nerve damaged by the tumor?

I am 9 months past surgery and still having what I call 'pain attacks' to my
right temple.

I too have an angel of a husband who hates to see me in pain and would gladly
trade places with me if he could.

  I hope you don't mind my questions!

   Be strong and keep sharing!

Meg

--- On Mon, 11/30/09, Kathy Adamcio <sba324@yahoo. com> wrote:

From: Kathy Adamcio <sba324@yahoo. com>
Subject: Re: [meningioma] angry and cross eyes
To: meningioma@yahoogro ups.com
Date: Monday, November 30, 2009, 9:22 PM



Hi I had two menig removed one in 1995 and the other in 2002. And I say a lot
that I to "Just want my life back' even though I now no that will never happen.
When I have had to much of the pain{facial neuropathy] and I am just soo angry
"Why me " I look at my grandaughter [17 months old], and think of my friend who
passed from a malig brain tumor, I calm down and
and said thank you, to my family mainly my husband who has sooo much
patience.because if it was the other way around I don't know if I would have
stuck around.
Sorry for going on and on
Thanks for listening
Kathy

____________ _________ _________ __
From: carol <carolsuerudd2000@ yahoo.com>
To: meningioma@yahoogro ups.com
Sent: Mon, November 30, 2009 2:12:53 PM
Subject: [meningioma] angry and cross eyes

Coming up on my 1 yr post Brain surgery... Haven't visited this site in a while,
sorry. I know there are quite a few who are going thru some tough times. I'm
getting better all the time. I would just like to ask any one out there if they
experienced double vision, slight memory loss,lapse in time frame and out of no
where all consuming anger. I feel like all of this should be gone by now. The
worst part about it is no Dr. wants to claim it. I had a "simple Craniotomy" for
a frontal lobe meningioma. It was large to me but a "simple procedure" to the
Dr.
I'm sorry to be whiny I just need to know that all this is norm and that I will
have my life back. I still get weird headaches in my left temple and I obviously
can't drive because of my eyes. Eye Dr. thinks it's something I was born with.
Brain Dr. says nothing to do with surgery or tumor. Why would I go 48 yrs and
then all the sudden become cross eyed? Could someone please give me some feed
back. Thanks

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

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







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

Hi Carol,
I have double vision and memory loss but not the anger. I also have other side
effects. I had a craniotomy in 2005, Gamma Knife in 2005,  and Cyberknife in
2008. I had double vision before the surgery. That is the symptom that prompted
an MRI that found the original m. I mistakenly thought that removing the m would
get rid of the double vision. When the double vision didn't go away after a
year, the doctors said I had abberative regeneration. Everyone is different .
Don't give up hope. I'm still waiting to get my life back.
Kathy



________________________________
From: carol <carolsuerudd2000@...>
To: meningioma@yahoogroups.com
Sent: Mon, November 30, 2009 2:12:53 PM
Subject: [meningioma] angry and cross eyes

 
Coming up on my 1 yr post Brain surgery... Haven't visited this site in a while,
sorry. I know there are quite a few who are going thru some tough times. I'm
getting better all the time. I would just like to ask any one out there if they
experienced double vision, slight memory loss,lapse in time frame and out of no
where all consuming anger. I feel like all of this should be gone by now. The
worst part about it is no Dr. wants to claim it. I had a "simple Craniotomy" for
a frontal lobe meningioma. It was large to me but a "simple procedure" to the
Dr.
I'm sorry to be whiny I just need to know that all this is norm and that I will
have my life back. I still get weird headaches in my left temple and I obviously
can't drive because of my eyes. Eye Dr. thinks it's something I was born with.
Brain Dr. says nothing to do with surgery or tumor. Why would I go 48 yrs and
then all the sudden become cross eyed? Could someone please give me some feed
back. Thanks




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

Kathy,
 
 You're not going on and on! You are being generous enough to share your
experience, good and bad. I'm sorry you are still in pain. Do your doctors think
that is a permanent condition? Is it the result of a nerve damaged by the tumor?
 
I am 9 months past surgery and still having what I call 'pain attacks' to my
right temple.
 
I too have an angel of a husband who hates to see me in pain and would gladly
trade places with me if he could.
 
 I hope you don't mind my questions!
 
  Be strong and keep sharing!
 
Meg

--- On Mon, 11/30/09, Kathy Adamcio <sba324@...> wrote:


From: Kathy Adamcio <sba324@...>
Subject: Re: [meningioma] angry and cross eyes
To: meningioma@yahoogroups.com
Date: Monday, November 30, 2009, 9:22 PM


 



Hi I had two menig removed one in 1995 and the other in 2002. And I say a lot
that I to "Just want my life back' even though I now no that will never happen.
When I have had to much of the pain{facial neuropathy] and I am just soo angry
"Why me " I look at my grandaughter [17 months old], and think of my friend who
passed from a malig brain tumor, I calm down and
and said thank you, to my family mainly my husband who has sooo much
patience.because if it was the other way around I don't know if I would have
stuck around.
Sorry for going on and on
Thanks for listening
Kathy

____________ _________ _________ __
From: carol <carolsuerudd2000@ yahoo.com>
To: meningioma@yahoogro ups.com
Sent: Mon, November 30, 2009 2:12:53 PM
Subject: [meningioma] angry and cross eyes

Coming up on my 1 yr post Brain surgery... Haven't visited this site in a while,
sorry. I know there are quite a few who are going thru some tough times. I'm
getting better all the time. I would just like to ask any one out there if they
experienced double vision, slight memory loss,lapse in time frame and out of no
where all consuming anger. I feel like all of this should be gone by now. The
worst part about it is no Dr. wants to claim it. I had a "simple Craniotomy" for
a frontal lobe meningioma. It was large to me but a "simple procedure" to the
Dr.
I'm sorry to be whiny I just need to know that all this is norm and that I will
have my life back. I still get weird headaches in my left temple and I obviously
can't drive because of my eyes. Eye Dr. thinks it's something I was born with.
Brain Dr. says nothing to do with surgery or tumor. Why would I go 48 yrs and
then all the sudden become cross eyed? Could someone please give me some feed
back. Thanks

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











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

Hi I had two menig removed one in 1995 and the other in 2002. And I say a lot
that I to "Just want my life back' even though I now no that will never happen.
When I have had to much of the pain{facial neuropathy] and I am just soo angry
"Why me " I look at my grandaughter [17 months old], and think of my friend who
passed from a malig brain tumor, I calm down and
and said thank you, to my family mainly my husband who has sooo much
patience.because if it was the other way around I don't know if I would have
stuck around.
Sorry for going on and on
Thanks for listening
Kathy


________________________________
From: carol <carolsuerudd2000@...>
To: meningioma@yahoogroups.com
Sent: Mon, November 30, 2009 2:12:53 PM
Subject: [meningioma] angry and cross eyes


Coming up on my 1 yr post Brain surgery... Haven't visited this site in a while,
sorry. I know there are quite a few who are going thru some tough times. I'm
getting better all the time. I would just like to ask any one out there if they
experienced double vision, slight memory loss,lapse in time frame and out of no
where all consuming anger. I feel like all of this should be gone by now. The
worst part about it is no Dr. wants to claim it. I had a "simple Craniotomy" for
a frontal lobe meningioma. It was large to me but a "simple procedure" to the
Dr.
I'm sorry to be whiny I just need to know that all this is norm and that I will
have my life back. I still get weird headaches in my left temple and I obviously
can't drive because of my eyes. Eye Dr. thinks it's something I was born with.
Brain Dr. says nothing to do with surgery or tumor. Why would I go 48 yrs and
then all the sudden become cross eyed? Could someone please give me some feed
back. Thanks







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

Carol,
 
 Thanks so much for sharing your experience! Every word helps someone. My
doctors told me before my surgery that I would likely experience double vision
in my right eye, for 6-12 months after surgery, as the meningioma was close to
my optic nerve. And now, 9 months post op, the double vision has persisted. I
have tiny lapses in memory- I will start a sentence and by the time I get to the
end of it, the word to make my point isn't there. It's like charades, with my
hubby suggesting words!
 
I also have a short temper, with small things, but if I stop and take a deep
breath, I can usually talk myself out of it.
 
 Both are things the neurosurgeons suggested could happen. I hope this is
helpful to you!!
 
 Thinking of you,  Meg
--- On Mon, 11/30/09, carol <carolsuerudd2000@...> wrote:


From: carol <carolsuerudd2000@...>
Subject: [meningioma] angry and cross eyes
To: meningioma@yahoogroups.com
Date: Monday, November 30, 2009, 2:12 PM


 



Coming up on my 1 yr post Brain surgery... Haven't visited this site in a while,
sorry. I know there are quite a few who are going thru some tough times. I'm
getting better all the time. I would just like to ask any one out there if they
experienced double vision, slight memory loss,lapse in time frame and out of no
where all consuming anger. I feel like all of this should be gone by now. The
worst part about it is no Dr. wants to claim it. I had a "simple Craniotomy" for
a frontal lobe meningioma. It was large to me but a "simple procedure" to the
Dr.
I'm sorry to be whiny I just need to know that all this is norm and that I will
have my life back. I still get weird headaches in my left temple and I obviously
can't drive because of my eyes. Eye Dr. thinks it's something I was born with.
Brain Dr. says nothing to do with surgery or tumor. Why would I go 48 yrs and
then all the sudden become cross eyed? Could someone please give me some feed
back. Thanks











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

Hi Carol,
I am post 17 years after 3 cranies..I had double vision for a while and wore a
patch on one eye which helped, they said it was not from surgery ha ha!  And I
too had anger only no one could explain why until I met a specialist in brain
strokes and damage and I was told because my temporal lobe was carved 3 times it
affected my personality, I still cannot feel cornered or I will explode. 
Unfortunately my marriage ended as did my job dealing with these changes.  I am
better in that I have exercises I use to calm me.
I also can cry easily and I was never a crier and that took some time to get
used too. 
The hardest thing to deal with was any time I asked about these side effects I
was told "we do not know as no one has ever survived your surgery"  so I quit
complaining and started helping other brain damaged people which I still do.
Hang in there and email me any time.
Mary 

--- On Mon, 11/30/09, carol <carolsuerudd2000@...> wrote:


From: carol <carolsuerudd2000@...>
Subject: [meningioma] angry and cross eyes
To: meningioma@yahoogroups.com
Date: Monday, November 30, 2009, 1:12 PM


 



Coming up on my 1 yr post Brain surgery... Haven't visited this site in a while,
sorry. I know there are quite a few who are going thru some tough times. I'm
getting better all the time. I would just like to ask any one out there if they
experienced double vision, slight memory loss,lapse in time frame and out of no
where all consuming anger. I feel like all of this should be gone by now. The
worst part about it is no Dr. wants to claim it. I had a "simple Craniotomy" for
a frontal lobe meningioma. It was large to me but a "simple procedure" to the
Dr.
I'm sorry to be whiny I just need to know that all this is norm and that I will
have my life back. I still get weird headaches in my left temple and I obviously
can't drive because of my eyes. Eye Dr. thinks it's something I was born with.
Brain Dr. says nothing to do with surgery or tumor. Why would I go 48 yrs and
then all the sudden become cross eyed? Could someone please give me some feed
back. Thanks








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

Coming up on my 1 yr post Brain surgery... Haven't visited this site in a while,
sorry. I know there are quite a few who are going thru some tough times. I'm
getting better all the time. I would just like to ask any one out there if they
experienced double vision, slight memory loss,lapse in time frame and out of no
where all consuming anger. I feel like all of this should be gone by now. The
worst part about it is no Dr. wants to claim it. I had a "simple Craniotomy" for
a frontal lobe meningioma. It was large to me but a "simple procedure" to the
Dr.
I'm sorry to be whiny I just need to know that all this is norm and that I will
have my life back. I still get weird headaches in my left temple and I obviously
can't drive because of my eyes. Eye Dr. thinks it's something I was born with.
Brain Dr. says nothing to do with surgery or tumor. Why would I go 48 yrs and
then all the sudden become cross eyed? Could someone please give me some feed
back. Thanks

no meg they couldnt remove through the nose. it wa attached to the decending
sinus vein which is located at the top of the skull plate above anything
supposedly great real estate, they resected about 80 5 as the sugeon felt that
doing more than that would stroke me out leaving me much f*cked up on the right
side of my body.

david
 Seagulls fly high, communing with sun,
Dolphins chatter to the music of the earth,
Whales dive deep and meditate on the energies of the earth.

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

--- On Tue, 11/24/09, davidthedolphinguy <dbisho0525@...> wrote:


From: davidthedolphinguy <dbisho0525@...>
Subject: [meningioma] Re: 9 months after surgery
To: meningioma@yahoogroups.com
Date: Tuesday, November 24, 2009, 9:03 AM


 



so 10 monthes after surgury, everything was fine, still dealing with a
personality change. not as able to multi-task and not as energetic, or focused.
then 11 monthes after surgury, the seizures started, and not the small ones. the
first one shattered me, it was atleast an and hour and a hlf before i reagained
consciousness. they have gotten smaller in time but not in impact. i have about
3 of these seizures per month nad have 4 to 5 of the small ones, just right leg
shaking and becoming unworkable. as well i ued to be able to use both hands
doing differing tasks, no longer, i have to be doing the same task or the hands
just dont work. and to top it off, the meningioma is going again. oh it was
attached to the decending sinus vein on the left side. for removal, it was the
size of a clemtine christmas orange

david
 
David,
 
 I'm horrified for you that after all you have obviously gone through, with a 
tumor that size, that you have seizures and regrowth!
 
Did your surgeons remove your original tumor through your nose, or by removing
part of your skull? Did you have a subsequent gamma knife treatment, and did the
surgeons remove the entire tumor the first time?
  My surgeons removed 95% of mine, leaving the outside shell, that was too
close to what they called 'high-priced real estate', the bundles of nerves at
the base of the skull, controlling vision, hearing and facial muscles.
 
 I hope you don't mind all the questions, and I really appreciate your honesty
and willingness to share your experience. What have your doctors suggested for
you?
 
Wishing you well,
 
Meg











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

so 10 monthes after surgury, everything was fine, still dealing with a
personality change. not as able to multi-task and not as energetic, or focused.
then 11 monthes after surgury, the seizures started, and not the small ones. the
first one shattered me, it was atleast an and hour and a hlf before i reagained
consciousness. they have gotten smaller in time but not in impact. i have about
3 of these seizures per month nad have 4 to 5 of the small ones, just right leg
shaking and becoming unworkable. as well i ued to be able to use both hands
doing differing tasks, no longer, i have to be doing the same task or the hands
just dont work. and to top it off, the meningioma is going again. oh it was
attached to the decending sinus vein on the left side. for removal, it was the
size of a clemtine christmas orange

david

I'd like some honest input on how people are feeling down the road, months or
years after surgery.

My ONLY symptom was severe pain in my upper jaw, from the meningioma compressing
the 5th cranial nerve. I had no numbness, tingling, or loss of vision or
hearing. The doctors were surprised at that, considering the amount of pain
involved.
An acupuncturist used very fine, [and not painful!]needles, inserting them into
my face, looking for dead spots and finding none.  A good sign, actually.
But, 9 months after surgery, I am still dealing with double vision, which I
expected [the tumor was very close to my optic nerve] and pain that still needs
medication every 4 hours [Tylenol and gabapentin]. This no one prepared me for.

Attitude toward recovery is very important, and I believe that, but this far
along, it is somewhat discouraging to be still dealing with some amount of pain.
Thanks for listening. I hope I don't sound whiny.......

  Meg

I would get a second opinion because my mother was told she had a meningioma
that had probably been there for years.  They did surgery to remove what they
could.  When the path, came back the surgeon was shocked to find it was atypical
and very fast growing.     Then when it grew back she was told to watch and
wait.  She got a second opinion at Duke and they said definately do not wait.  
So she received treatment and now the tumor is almost gone.  I pray your tumor
is not atypical, but if you get an MRI every 6 weeks they will know by how slow
or fast it grows I think.   I would always get a second opinion at a brain tumor
center.  I dont know where you live but Duke Medical Center ..The Robert Tisch
 Brain Tumor Center is wonderful in Durham North  Carolina.   I know there are
alot of other great places as well,  but Duke has been wonderful with my
mother.    Im not writing this to make you panic, yours is probably exactly what
  your Dr. says it is, my mothers experiance is probably pretty rare. God
bless,   Janet

ps...yes I saw a neuro opthalmologist a couple weeks ago and she said all the
tests were normal. I was there over 5 hours !!
Jane

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

Thanks for the note Donnie...I was wondering if there was any danger in just
watching and waiting.
Jane

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

Dear judy,



I have been through this. Enjoy your holidaY. DON,T PUT IT OFF OVER THEREE
MONTHS. bE CONFIDENT THAT EVERYTHING WILL COME OUT AS A BLESSING.  THESE DOCTORS
ARE FANATICAL ABOUT TAKONG OUT BRAIN TOMORS. THEY LOVE TO DO IT THE WAY
MUSICIANS LOVR TO PLAY THEIR MUSIC. bLESSING TO YOU FROM THE FOUR DIRECTIONS
FROM gAYLE



To: meningioma@yahoogroups.com
From: judyhoubre@...
Date: Sun, 22 Nov 2009 07:04:59 -0800
Subject: Re: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th
cranial nerve.





Thanks everyone for kind words and support and sharing.  This has given me great
peace.

After reading some of your emails I am sure that everything will be fine. 
Waiting is part of the game but who know how long I have been waiting to find
this thing! So a few more days isn't so bad..  Actually it is a good thing, it
lit a fire under mine and hubbys butt's to get the Christmas shopping DONE! I am
never done early!

Also, since some people wrote that they were able to wait a while for surgery, I
am hoping they will say we can wait untill after the holiday season is over -
-less stress on the family and maybe even until after my daughters school band
plays in Disney during school break in Feburary.  We were planning to go and see
them with our other daughter.  I will hope for that anyway but obviously will do
what ever the DRs think is best.  I know if I get it out before, chances are
that I can't fly for a few months.

Anyway, I just wanted to thank you all for supporting me.

Judy



________________________________
From: Susie McAllister <scrapsusie@...>
To: meningioma@yahoogroups.com
Sent: Sat, November 21, 2009 6:44:05 PM
Subject: Re: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th
cranial nerve.



Judy:

   Oh it must be so hard to wait until the 30th!  I only had to wait 4 days and
it felt like forever.  I had a 7 mm M on the right frontal lobe, removed Nov 14,
2008.  Last year, I was just leaving the hospital on Nov 21st.  This year, I am
back at the hospital, but I am not the patient, yay!  My daughter delivered a
baby yesterday morning and I was there to welcome him into the world!  There IS
life after brain surgery!

    My surgery was not nearly as bad as I was expecting.  There was not that much
pain.  I had a lot of complications from pre-existing conditions (heart problem,
blood clots) so my recovery was long.  After 3 months I felt pretty close to
normal, but at a year out, now I feel fully recovered.  I have some numbness of
my left hand, but I am typing this, so I have learned to work around it.  I am
better than before surgery, especially mentally.  My brain fogginess is pretty
much gone, other than what is normal for a 53 year old wom an, lol.

    It's easy to say don't be scared.  I was terrified.  But it turned out fine
for me, and it can for you too.  Write again after you know what your course of
treatment will be and we can help more.  Meanwhile we are happy to share our
experiences and our support.

Susie in WA state

----- Original Message -----
From: "Judy Houbre" <judyhoubre@yahoo. com>
To: meningioma@yahoogro ups.com
Sent: Friday, November 20, 2009 12:59:32 PM GMT -08:00 US/Canada Pacific
Subject: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th cranial
nerve.



Hi all,
I am new to this group and just was diagnoesed with a 6mm meningioma on my 5th
cranial nerve

it started with a twitch in my lip my GP said it was likely stress. Then about a
month ago I lost almost all hearing in my right ear.  Went back to my GP, gave
me antibiotics for a suspected ear infection.  No better two weeks later back
there again and finally sent for an MRI.  I got the results and they said it is
most likely a 6mm meingioma on my 5th cranial nerve.  The nerosurgeon can't see
me until 11/30.  I just stared having a weird pressure sensation on the top of
my head.  Again GP said not to worry, just wait the 11 days for the appt.  Not
much faith at this point and very scared.  Did you have surgery? How bad was it
and what was the recovery like.  Will I be able to work after this. I am a
computer programmer. Any info would be appreciated.

From what I have read, I am lucky to just have twitching and hearing loss, it
seems like many of you are in pain.  I am sorry for that.  Hopefully the surgery
made you much better than before.

i appreciate any info you can give into what i may have to battle. Thanks

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

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

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





_________________________________________________________________
Hotmail: Trusted email with powerful SPAM protection.
http://clk.atdmt.com/GBL/go/177141665/direct/01/

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

I was just diagnosed on Thursday with an 1 1/4" meningioma around my
left eye area--my doctor wants me to wait till January when he'll do
another MRI to see if it's fast or slow growing, then he says he'll
know whether or not I should have surgery.

Is there any diet or supplement that would be helpful in shrinking the
tumor naturally?

Thanks,
Virginia
NB
Canada

Jane, I was diagnosed with a 3-3.5 cm meningioma 3 years ago.  We have been
watching it and there has been minimal change in the 3 years.  Mine is also
laying against the optic nerve, so I have had MRI's and been seeing a
neuro-ophthalmologist, first every 3 months for 2 years, then every 6 months. 
When I was in last month, there was a very slight change.  Our hospital has the
Gamma Knife Perfexion (latest technology) now, so the neurosurgeon discussed
with my husband and me about going for Gamma Knife.  Due to insurance
considerations, it seemed like a good time to do it.  I went in last week for
treatment.  GK works over weeks to months, so it will be awhile before we see if
we had good results.  I think that watching and waiting makes good sense, but
there is a very human desire to do something.  I was okay with waiting for those
3 years, but am glad to have done the GK.  Good luck to you.

Donnie Ryan

--- In meningioma@yahoogroups.com, "Dennis/Jane Arnholt" <poodles@...> wrote:
>
> Is anyone else on this list "watching and waiting" with the doctors, like I
am? I have a 2.5cm meng. next to my optic nerve and they say I could've had it
for years.
> I had an MRI for migraines 5 years ago but it wasn't there then.
> Jane in IND
>
> [Non-text portions of this message have been removed]
>

Is anyone else on this list "watching and waiting" with the doctors, like I am?
I have a 2.5cm meng. next to my optic nerve and they say I could've had it for
years.
I had an MRI for migraines 5 years ago but it wasn't there then.
Jane in IND

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

Judy:

   Glad we could help in some small way, that's why we're here.  Be sure to
let us know what the doctor says.  God bless you, Susie


----- Original Message -----
From: "Judy Houbre" <judyhoubre@...>
To: meningioma@yahoogroups.com
Sent: Sunday, November 22, 2009 7:04:59 AM GMT -08:00 US/Canada Pacific
Subject: Re: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th
cranial nerve.

 




Thanks everyone for kind words and support and sharing.  This has given me
great peace.

After reading some of your emails I am sure that everything will be fine. 
Waiting is part of the game but who know how long I have been waiting to find
this thing! So a few more days isn't so bad..  Actually it is a good thing, it
lit a fire under mine and hubbys butt's to get the Christmas shopping DONE! I am
never done early!

Also, since some people wrote that they were able to wait a while for
surgery, I am hoping they will say we can wait untill after the holiday season
is over - -less stress on the family and maybe even until after my daughters
school band plays in Disney during school break in Feburary.  We were planning
to go and see them with our other daughter.  I will hope for that anyway but
obviously will do what ever the DRs think is best.  I know if I get it out
before, chances are that I can't fly for a few months. 

Anyway, I just wanted to thank you all for supporting me.

Judy

 

________________________________
From: Susie McAllister < scrapsusie@... >
To: meningioma@yahoogroups.com
Sent: Sat, November 21, 2009 6:44:05 PM
Subject: Re: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th
cranial nerve.

 

Judy:

  Oh it must be so hard to wait until the 30th!  I only had to wait 4 days and
it felt like forever.  I had a 7 mm M on the right frontal lobe, removed Nov
14, 2008.  Last year, I was just leaving the hospital on Nov 21st.  This year,
I am back at the hospital, but I am not the patient, yay!  My daughter
delivered a baby yesterday morning and I was there to welcome him into the
world!  There IS life after brain surgery! 

   My surgery was not nearly as bad as I was expecting.  There was not that
much pain.  I had a lot of complications from pre-existing conditions (heart
problem, blood clots) so my recovery was long.  After 3 months I felt pretty
close to normal, but at a year out, now I feel fully recovered.  I have some
numbness of my left hand, but I am typing this, so I have learned to work around
it.  I am better than before surgery, especially mentally.  My brain fogginess
is pretty much gone, other than what is normal for a 53 year old wom an, lol. 

   It's easy to say don't be scared.  I was terrified.  But it turned out
fine for me, and it can for you too.  Write again after you know what your
course of treatment will be and we can help more.  Meanwhile we are happy to
share our experiences and our support.

Susie in WA state

----- Original Message -----
From: "Judy Houbre" <judyhoubre@yahoo. com>
To: meningioma@yahoogro ups.com
Sent: Friday, November 20, 2009 12:59:32 PM GMT -08:00 US/Canada Pacific
Subject: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th cranial
nerve.

 

Hi all,
I am new to this group and just was diagnoesed with a 6mm meningioma on my 5th
cranial nerve

it started with a twitch in my lip my GP said it was likely stress. Then about a
month ago I lost almost all hearing in my right ear.  Went back to my GP, gave
me antibiotics for a suspected ear infection.  No better two weeks later back
there again and finally sent for an MRI.  I got the results and they said it is
most likely a 6mm meingioma on my 5th cranial nerve.  The nerosurgeon can't see
me until 11/30.  I just stared having a weird pressure sensation on the top of
my head.  Again GP said not to worry, just wait the 11 days for the appt.  Not
much faith at this point and very scared.  Did you have surgery? How bad was it
and what was the recovery like.  Will I be able to work after this. I am a
computer programmer. Any info would be appreciated.

From what I have read, I am lucky to just have twitching and hearing loss, it
seems like many of you are in pain.  I am sorry for that.  Hopefully the
surgery made you much better than before.

i appreciate any info you can give into what i may have to battle. Thanks

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

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

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




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

Thanks everyone for kind words and support and sharing.  This has given me
great peace.

After reading some of your emails I am sure that everything will be fine. 
Waiting is part of the game but who know how long I have been waiting to find
this thing! So a few more days isn't so bad..  Actually it is a good thing, it
lit a fire under mine and hubbys butt's to get the Christmas shopping DONE! I am
never done early!

Also, since some people wrote that they were able to wait a while for
surgery, I am hoping they will say we can wait untill after the holiday season
is over - -less stress on the family and maybe even until after my daughters
school band plays in Disney during school break in Feburary.  We were planning
to go and see them with our other daughter.  I will hope for that anyway but
obviously will do what ever the DRs think is best.  I know if I get it out
before, chances are that I can't fly for a few months. 

Anyway, I just wanted to thank you all for supporting me.

Judy

 

________________________________
From: Susie McAllister <scrapsusie@...>
To: meningioma@yahoogroups.com
Sent: Sat, November 21, 2009 6:44:05 PM
Subject: Re: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th
cranial nerve.

 


Judy:

  Oh it must be so hard to wait until the 30th!  I only had to wait 4 days and
it felt like forever.  I had a 7 mm M on the right frontal lobe, removed Nov
14, 2008.  Last year, I was just leaving the hospital on Nov 21st.  This year,
I am back at the hospital, but I am not the patient, yay!  My daughter
delivered a baby yesterday morning and I was there to welcome him into the
world!  There IS life after brain surgery! 

   My surgery was not nearly as bad as I was expecting.  There was not that
much pain.  I had a lot of complications from pre-existing conditions (heart
problem, blood clots) so my recovery was long.  After 3 months I felt pretty
close to normal, but at a year out, now I feel fully recovered.  I have some
numbness of my left hand, but I am typing this, so I have learned to work around
it.  I am better than before surgery, especially mentally.  My brain fogginess
is pretty much gone, other than what is normal for a 53 year old wom an, lol. 

   It's easy to say don't be scared.  I was terrified.  But it turned out
fine for me, and it can for you too.  Write again after you know what your
course of treatment will be and we can help more.  Meanwhile we are happy to
share our experiences and our support.

Susie in WA state

----- Original Message -----
From: "Judy Houbre" <judyhoubre@yahoo. com>
To: meningioma@yahoogro ups.com
Sent: Friday, November 20, 2009 12:59:32 PM GMT -08:00 US/Canada Pacific
Subject: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th cranial
nerve.

 

Hi all,
I am new to this group and just was diagnoesed with a 6mm meningioma on my 5th
cranial nerve

it started with a twitch in my lip my GP said it was likely stress. Then about a
month ago I lost almost all hearing in my right ear.  Went back to my GP, gave
me antibiotics for a suspected ear infection.  No better two weeks later back
there again and finally sent for an MRI.  I got the results and they said it is
most likely a 6mm meingioma on my 5th cranial nerve.  The nerosurgeon can't see
me until 11/30.  I just stared having a weird pressure sensation on the top of
my head.  Again GP said not to worry, just wait the 11 days for the appt.  Not
much faith at this point and very scared.  Did you have surgery? How bad was it
and what was the recovery like.  Will I be able to work after this. I am a
computer programmer. Any info would be appreciated.

From what I have read, I am lucky to just have twitching and hearing loss, it
seems like many of you are in pain.  I am sorry for that.  Hopefully the
surgery made you much better than before.

i appreciate any info you can give into what i may have to battle. Thanks

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

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







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

Judy:

  Oh it must be so hard to wait until the 30th!  I only had to wait 4 days and
it felt like forever.  I had a 7 mm M on the right frontal lobe, removed Nov
14, 2008.  Last year, I was just leaving the hospital on Nov 21st.  This year,
I am back at the hospital, but I am not the patient, yay!  My daughter
delivered a baby yesterday morning and I was there to welcome him into the
world!  There IS life after brain surgery! 

   My surgery was not nearly as bad as I was expecting.  There was not that
much pain.  I had a lot of complications from pre-existing conditions (heart
problem, blood clots) so my recovery was long.  After 3 months I felt pretty
close to normal, but at a year out, now I feel fully recovered.  I have some
numbness of my left hand, but I am typing this, so I have learned to work around
it.  I am better than before surgery, especially mentally.  My brain fogginess
is pretty much gone, other than what is normal for a 53 year old wom an, lol. 

   It's easy to say don't be scared.  I was terrified.  But it turned out
fine for me, and it can for you too.  Write again after you know what your
course of treatment will be and we can help more.  Meanwhile we are happy to
share our experiences and our support.

Susie in WA state


----- Original Message -----
From: "Judy Houbre" <judyhoubre@...>
To: meningioma@yahoogroups.com
Sent: Friday, November 20, 2009 12:59:32 PM GMT -08:00 US/Canada Pacific
Subject: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th cranial
nerve.

 




Hi all,
I am new to this group and just was diagnoesed with a 6mm meningioma on my 5th
cranial nerve

it started with a twitch in my lip my GP said it was likely stress. Then about a
month ago I lost almost all hearing in my right ear.  Went back to my GP, gave
me antibiotics for a suspected ear infection.  No better two weeks later back
there again and finally sent for an MRI.  I got the results and they said it is
most likely a 6mm meingioma on my 5th cranial nerve.  The nerosurgeon can't see
me until 11/30.  I just stared having a weird pressure sensation on the top of
my head.  Again GP said not to worry, just wait the 11 days for the appt.  Not
much faith at this point and very scared.  Did you have surgery? How bad was it
and what was the recovery like.  Will I be able to work after this. I am a
computer programmer. Any info would be appreciated.

From what I have read, I am lucky to just have twitching and hearing loss, it
seems like many of you are in pain.  I am sorry for that.  Hopefully the
surgery made you much better than before.

i appreciate any info you can give into what i may have to battle. Thanks

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




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

Hello Meningioma friends,

Time to time i come accros some interesting articales on the internet,
here is one I'd like to share.

"Interestingly, these (meiningioma)  tumors have an embryologic
relationship with cells found in the muscle layer of the utereus. In
fact, it is exceedingly difficult for the pathologist to distinguish the
meningioma from the fibroid tumors of the utereus under the microscope.
Also, they share the characteristic female hormonal receptors (estrogen
and progesterone) on their cell surfaces. This characteristic has lead
to the testing of anti-estrogen receptor agents, such as tamoxifin, as a
growth-inhibiting agent in these tumors. Clinical studies to date have
failed to provide siginificantly positive results. "

To read more go to

http://www.brain-surgery.com/mening.html
<http://www.brain-surgery.com/mening.html>



"The meningioma is the neurosurgeon's "friend" and often his most
enduring challenge. For both the physician and patient, this tumor
carries a true tag of benign. It also carries the possibility of "cure"
in approximately 80% of cases. Thus, the long-term outcome for a patient
with this tumor is a direct function of the skill and assiduousness of
the surgeon who removes it. "

This friend thing reminds me of the following song by Biz Markie Just A
Friend.

http://www.youtube.com/watch?v=r6a-AHLRoAw&feature=related
<http://www.youtube.com/watch?v=r6a-AHLRoAw&feature=related>

The fountain of knowledge - The Internet

Zolt











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

Judy,
 
 I would like to second Norma's words also.Being new to this, and not having
spoken to your surgeons yet, are impacting your emotions, and naturally so! The
surgeons will answer questions you can't even know to ask. I had to travel for
mine- to UPMC Presby in Pittsburgh, and was astonished at the sheer number of
other people with this problem! The surgeons that do operations for meningiomas
are dedicated and top flight.
 
  When you HAVE spoken to them, I'm sure we can be of even more help here,
emotionally. For us to offer medical advice wouldn't be prudent, as every case
is different. But, we all care, and can support while you wait.
 
  I don't have children, so can't advise you, except to say that information
helps you be a good, confident  advocate.
 
 Thinking of you,
 
Meg




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

My "M" right infra tempra fossa 2 CM could have been there for years. It was not
causing any symptoms and would not have been found if I didnt have a cat scan
for a bump on the head.Location is everything as well as the problems it may be
causing. Sage advice Norma! 

--- On Sat, 11/21/09, Norma Stephens <wvmtlady@...> wrote:


From: Norma Stephens <wvmtlady@...>
Subject: Re: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th
cranial nerve.
To: meningioma@yahoogroups.com
Date: Saturday, November 21, 2009, 1:17 AM


 



Hey Judy! Welcome! Just take a deep breath and relax. Don't panic. That makes
the whole nervous system work overtime and your body reacts with twitches and
other reactions not so pleasant. Your mind is amazing. You'd be surprised at
what it can cause or prevent, depending on your control of it. It helps to have
an understanding family/partner for support. It also helps if you are younger
and healthier than I am. I'm fairly old in years.  I am lucky that at this
point,I have no pain from my posterior fossa "M"
which has been there for many years. I had a right frontal craniotomy to remove
the M that grew big enough to cause a seizure in 10~'05.
The support for the skullcap and the scar is still bothersome to shampooing and
styling  but not really painful.Do you live in a large city where you have some
choices of neurosurgeons, or is there a medical University teaching hospital
near by? There is a website called rate an MD where you can check you Drs scores
and rate them,read comments from patients, etc. If you can't find it, give me a
yell,and I'll look it up. Meanwhile, just hang in there and think positively,
and trust that you are where you are supposed to be at this time in your
life.Everyone in this group will be happy to answer your questions as best we
can, but they are our experiences. I have no medical training,just what I've
been thru.We are all different. No point in worrying about something you can do
nothing about! I will add you to our prayer list and my thoughts and prayers are
with you. If I can be of help, write me either here or on my home mail.  God
Bless. Nj    

--- On Fri, 11/20/09, sylvano CERNIGLIA <straycatvano@ yahoo.com> wrote:

From: sylvano CERNIGLIA <straycatvano@ yahoo.com>
Subject: Re: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th
cranial nerve.
To: meningioma@yahoogro ups.com
Date: Friday, November 20, 2009, 9:54 PM

 

Well to start with with You are in the right place. There is no need to panic at
this stage. The people in this room will give an honest information. My "M"
didn't grow for years. Feel free to ask any questions that come to mind.Welcome
to the room!

--- On Fri, 11/20/09, Judy Houbre <judyhoubre@ yahoo. com> wrote:

From: Judy Houbre <judyhoubre@ yahoo. com>
Subject: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th cranial
nerve.
To: meningioma@yahoogro ups.com
Date: Friday, November 20, 2009, 9:59 PM

 

Hi all,
I am new to this group and just was diagnoesed with a 6mm meningioma on my 5th
cranial nerve

it started with a twitch in my lip my GP said it was likely stress. Then about a
month ago I lost almost all hearing in my right ear.  Went back to my GP, gave
me antibiotics for a suspected ear infection.  No better two weeks later back
there again and finally sent for an MRI.  I got the results and they said it is
most likely a 6mm meingioma on my 5th cranial nerve.  The nerosurgeon can't see
me until 11/30.  I just stared having a weird pressure sensation on the top of
my head.  Again GP said not to worry, just wait the 11 days for the appt.  Not
much faith at this point and very scared.  Did you have surgery? How bad was it
and what was the recovery like.  Will I be able to work after this. I am a
computer programmer. Any info would be appreciated.

From what I have read, I am lucky to just have twitching and hearing loss, it
seems like many of you are in pain.  I am sorry for that.  Hopefully the
surgery made you much better than before.

i appreciate any info you can give into what i may have to battle. Thanks

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

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

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








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

Hey Judy! Welcome! Just take a deep breath and relax. Don't panic. That makes
the whole nervous system work overtime and your body reacts with twitches and
other reactions not so pleasant. Your mind is amazing. You'd be surprised at
what it can cause or prevent, depending on your control of it. It helps to have
an understanding family/partner for support. It also helps if you are younger
and healthier than I am. I'm fairly old in years.  I am lucky that at this
point,I have no pain from my posterior fossa "M"
which has been there for many years. I had a right frontal craniotomy to remove
the M that grew big enough to cause a seizure in 10~'05.
The support for the skullcap and the scar is still bothersome to shampooing and
styling  but not really painful.Do you live in a large city where you have some
choices of neurosurgeons, or is there a medical University teaching hospital
near by? There is a website called rate an MD where you can check you Drs scores
and rate them,read comments from patients, etc. If you can't find it, give me a
yell,and I'll look it up. Meanwhile, just hang in there and think positively,
and trust that you are where you are supposed to be at this time in your
life.Everyone in this group will be happy to answer your questions as best we
can, but they are our experiences.I have no medical training,just what I've been
thru.We are all different. No point in worrying about something you can do
nothing about! I will add you to our prayer list and my thoughts and prayers are
with you. If I can be of help, write me either here or on my home mail.  God
Bless. Nj    

--- On Fri, 11/20/09, sylvano CERNIGLIA <straycatvano@...> wrote:


From: sylvano CERNIGLIA <straycatvano@...>
Subject: Re: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th
cranial nerve.
To: meningioma@yahoogroups.com
Date: Friday, November 20, 2009, 9:54 PM


 



Well to start with with You are in the right place. There is no need to panic at
this stage. The people in this room will give an honest information. My "M"
didn't grow for years. Feel free to ask any questions that come to mind.Welcome
to the room!

--- On Fri, 11/20/09, Judy Houbre <judyhoubre@yahoo. com> wrote:

From: Judy Houbre <judyhoubre@yahoo. com>
Subject: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th cranial
nerve.
To: meningioma@yahoogro ups.com
Date: Friday, November 20, 2009, 9:59 PM

 

Hi all,
I am new to this group and just was diagnoesed with a 6mm meningioma on my 5th
cranial nerve

it started with a twitch in my lip my GP said it was likely stress. Then about a
month ago I lost almost all hearing in my right ear.  Went back to my GP, gave
me antibiotics for a suspected ear infection.  No better two weeks later back
there again and finally sent for an MRI.  I got the results and they said it is
most likely a 6mm meingioma on my 5th cranial nerve.  The nerosurgeon can't see
me until 11/30.  I just stared having a weird pressure sensation on the top of
my head.  Again GP said not to worry, just wait the 11 days for the appt.  Not
much faith at this point and very scared.  Did you have surgery? How bad was it
and what was the recovery like.  Will I be able to work after this. I am a
computer programmer. Any info would be appreciated.

From what I have read, I am lucky to just have twitching and hearing loss, it
seems like many of you are in pain.  I am sorry for that.  Hopefully the
surgery made you much better than before.

i appreciate any info you can give into what i may have to battle. Thanks

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

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











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

Well to start with with You are in the right place. There is no need to panic at
this stage. The people in this room will give an honest information. My "M"
didn't grow for years. Feel free to ask any questions that come to mind.Welcome
to the room!

--- On Fri, 11/20/09, Judy Houbre <judyhoubre@...> wrote:


From: Judy Houbre <judyhoubre@...>
Subject: [meningioma] I was just diagnosed with a 6mm meingiom on my 5th cranial
nerve.
To: meningioma@yahoogroups.com
Date: Friday, November 20, 2009, 9:59 PM


 



Hi all,
I am new to this group and just was diagnoesed with a 6mm meningioma on my 5th
cranial nerve

it started with a twitch in my lip my GP said it was likely stress. Then about a
month ago I lost almost all hearing in my right ear.  Went back to my GP, gave
me antibiotics for a suspected ear infection.  No better two weeks later back
there again and finally sent for an MRI.  I got the results and they said it is
most likely a 6mm meingioma on my 5th cranial nerve.  The nerosurgeon can't see
me until 11/30.  I just stared having a weird pressure sensation on the top of
my head.  Again GP said not to worry, just wait the 11 days for the appt.  Not
much faith at this point and very scared.  Did you have surgery? How bad was it
and what was the recovery like.  Will I be able to work after this. I am a
computer programmer. Any info would be appreciated.

From what I have read, I am lucky to just have twitching and hearing loss, it
seems like many of you are in pain.  I am sorry for that.  Hopefully the
surgery made you much better than before.

i appreciate any info you can give into what i may have to battle. Thanks

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








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

Hi all,
I am new to this group and just was diagnoesed with a 6mm meningioma on my 5th
cranial nerve

it started with a twitch in my lip my GP said it was likely stress. Then about a
month ago I lost almost all hearing in my right ear.  Went back to my GP, gave
me antibiotics for a suspected ear infection.  No better two weeks later back
there again and finally sent for an MRI.  I got the results and they said it is
most likely a 6mm meingioma on my 5th cranial nerve.  The nerosurgeon can't see
me until 11/30.  I just stared having a weird pressure sensation on the top of
my head.  Again GP said not to worry, just wait the 11 days for the appt.  Not
much faith at this point and very scared.  Did you have surgery? How bad was it
and what was the recovery like.  Will I be able to work after this. I am a
computer programmer. Any info would be appreciated.

From what I have read, I am lucky to just have twitching and hearing loss, it
seems like many of you are in pain.  I am sorry for that.  Hopefully the surgery
made you much better than before.

i appreciate any info you can give into what i may have to battle. Thanks




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

Hello Annette,
 
 6 years is a terribly long time to be in so much pain! What have your doctors
done to try to find a cause for it? I was having severe pain in my upper jaw and
spent 3 months having root canals and a tooth extraction, before and MRI
showed the meningioma compressing the nerve that runs across my upper jaw. I had
surgery, and even though I am exactly one year into this painful adventure, it's
somewhat diminishing. I am on gabapentin.. Does Lyrica have side effects?
 
 Fatigue was a huge factor for me, too. I could only sleep 2 1/2 hours at a
time, even with viocodin, so not getting enough straight hours of sleep is
terribly fatiguing, I'm not surprised that it's a major  factor for you, having
had 6 years of this. It must be taking a toll on your whole life.
 
 I hope that having people here to discuss these things is helpful, and
hopeful, for you. Feel free to continue to express what you are feeling.
You have friends here.
  Thinking of you,
 
Meg
--- On Sat, 11/7/09, annetteh <annetteh@...> wrote:


From: annetteh <annetteh@...>
Subject: [meningioma] Trigeminal Neuropathy
To: meningioma@yahoogroups.com
Date: Saturday, November 7, 2009, 9:03 PM


 



I have it too. My docs (after 6 years of this) just told me there are no
good options left for my TN. They say even morphne type drugs won't help
this type of nerve pain. I'll see what I an find about Deep Brain Stim.
Anybody else hav any results? I'm alrady on Lyrica and have tried all the
usual combinations. I also have sever fatigue. Does anyone know if this
could be from the constant nerve pain? Anythng help with that?











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

I have it too.  My docs (after 6 years of this) just told me there are no
good options left for my TN.  They say even morphne type drugs won't help
this type of nerve pain.  I'll see what I an find about Deep Brain Stim.
Anybody else hav any results?  I'm alrady on Lyrica and have tried all the
usual combinations.  I also have sever fatigue.  Does anyone know if this
could be from the constant nerve pain?  Anythng help with that?