Hi, my name is Darla.  My story is about my son, 2 year old Trent,
the sweetest little pumpkin head I know.  When he was about 9 months
old I started to notice he did not use his right hand and mentioned
this to anyone who would listen though I was repeatedly told not to
worry about it.  Around a year of age the docs started taking me
seriously and he saw a neurologist who was certain he had a stroke
at birth and wanted an MRI to confirm this, I told her I was sure
that the problem was progressively getting worse and that didn't fit
with a stroke but she blew me off and we waited a month for the
MRI.  They found a VERY large mass in his left fronto parietal
region (about the size of a fist, and his head isn't very large at 1
year).  The next day they went in and his neuro-surgeon said blood
that looked like motor oil just started oozing out as soon as they
cut.  Apparently, he has some kind of vascular malformation (they
have never been more clear than that, though cavernous malformation
has been tossed around) that had started to bleed and had been
bleeding in his head for a long time creating a calcified cyst
around itself and this was putting pressure on his brain leading to
his symptoms.  They removed what they could without causing too much
damage and he functions quite well at this point.  Trent still has
limited use of his right side, oral motor weakness on that side,
much difficulty using his right hand and he wears a brace on his leg
to help him walk, he has a lot of PT and OT services to keep us
busy.  Cognitively he seems to be on target so far and he is usually
a very sweet and loving little person.

We thought that we were out of the woods with the vascular issues
until recently when his regular MRI(every 3 months with sedation,
not fun!) found that the original area of malformation had begun to
grow again.  They aren't sure whether to do radiation or another
surgery but at present they want to watch and see what it does
next.  There are also concerns that malformed veins in his GI tract
might be causing some recent tummy troubles he has been
experiencing.

I guess that is about it, sorry write so long!  I am wondering if
anyone else has had similiar experiences?  Also, I am going to start
a yahoo-group specifically as a support group for moms who's kids
are going through this, I know there aren't many of us but if any of
you have kids who are going through this I would love it if you
would join!

Thanks
Darla

Hi Sara.  I had GK 2/22/05.  They only uncomfortable
part of it is the head frame.  It is awkward.  When
they put it on, I won't lie, it hurts.  They use 4
pins, 2 in front and 2 in back, to position it.  They
give you an IV to relax you and then shots to numb the
area where the pins go.  You really don't care what
they do.  I went in at 4am and was on my was home by
10am.  Sometime they will keep people overnight.  It
just depends on the person and the Dr.  As far as they
procedure itself.  It is a breeze!  Hope you are doing
well.

Kaye


--- Sara <saelenn@...> wrote:
> Well, I saw the neurosurgeon this morning, and the
> verdict is in.  I'm
> going to have a gamma knife procedure on June 13.
>
> I have read a lot of the clinical and medical
> information on it, and I
> think I pretty well know what to expect there.  But
> I'm still not
> really sure what it's actually like as an
> experience.  Kaye, didn't
> you say you had a gamma knife procedure done?  Maybe
> you could fill me in.
>
> Thanks!
> Sara
>
>
>
>



__________________________________
Do you Yahoo!?
Yahoo! Small Business - Try our new resources site!
http://smallbusiness.yahoo.com/resources/

Well, I saw the neurosurgeon this morning, and the verdict is in.  I'm
going to have a gamma knife procedure on June 13.

I have read a lot of the clinical and medical information on it, and I
think I pretty well know what to expect there.  But I'm still not
really sure what it's actually like as an experience.  Kaye, didn't
you say you had a gamma knife procedure done?  Maybe you could fill me in.

Thanks!
Sara

Yeah, I did.  I've been meaning to send you a thank you note, but it's
been really busy here at work, and I have no memory.  (But at least
now I can blame it on the AVM!)

Sara

--- In neurovascular@yahoogroups.com, "gentleo" <gentleo@y...> wrote:
> ---
> Hi Sara.  Did you check the websites I emailed you?  Keep in touch.
> Kaye
>
>
>  In neurovascular@yahoogroups.com, "Sara" <saelenn@y...> wrote:
> > Hi, Kaye.
> >
> > What exactly is gamma knife?  I'm not familiar with it, and I
> haven't
> > found anything about it in the research I've done.  Maybe you could
> > give me some more details?
> >
> > Sara
> >
> > --- In neurovascular@yahoogroups.com, Kaye McIntosh <gentleo@y...>
> wrote:
> > > Hi Sara.  My name is Kaye.  I live in Marathon, FL(in
> > > the keys).  I am 47. I don't have an AVM.  I have a CA
> > > (cavernous angioma).  I was diagnosed Christmas Day.
> > > Actually they thought that it was a tumor.  This
> > > happened when my husband and I were visiting my family
> > > in NC.  I had a grand mal seizure and was taken by
> > > ambulance to the hospital.  They did a CT and it
> > > showed a mass in my left temporpartial lobe.  They
> > > refered me to a neurosurgeon in Cape Coral, FL( on the
> > > gulf coast).  They put me on dialantin to control the
> > > seizures.  I say the neuro a the first week of 1/05.
> > > He did a MRI and said that it was most likely it was a
> > > CA.  I was scheduled to have another MRI and MRA in
> > > one month.  On 1/10/05 I started getting dizzy and
> > > ended up in the local ER. My dilantin level was almost
> > > nil.  They pumped me full of the stuff and kept me
> > > there for 2 days.  I saw a local neurologist while
> > > there who ordered another mri and an eeg.  While in
> > > the hospital one of the nurses told me about a
> > > neurosurgeon, Dr. Aizik Wolf from Miami, who comes to
> > > Key West once a month.  I checked him out on the
> > > internet and found out that he uses the gamma knife.
> > > I saw him a couple of weeks later in Key West.  He
> > > looked at my mri and mra and said that I was a good
> > > candidate for the procedure.  I really didn't want
> > > open surguery.  I don't like being cut on!  I went to
> > > Doctor's Hospital in Miami on 2/22/05 and had the
> > > gamma knife.  I will say it was an experience!  It
> > > didn't really hurt, just a little uncomfortable.  I
> > > had a followup mri last week and will see the neuro
> > > next week to see what he says about it.  Hopefully the
> > > gamma knife has stoped the bleeding.  I seems like it
> > > works better on AVMs than CA.  Time will tell!
> > > Sorry I have been so long winded.  Hope I have been
> > > helpful.
> > > Take care.
> > > Kaye
> > >
> > >
> > > --- Sara <saelenn@y...> wrote:
> > > > Hi, my name is Sara, and I'm new here. I'm 18, and
> > > > I'm a college
> > > > freshman in Alabama.
> > > >
> > > > I recently found out that I have an AVM in my left
> > > > frontal lobe. It
> > > > started about a year ago when I started having
> > > > random episodes where
> > > > I would pass out cold for several minutes with no
> > > > warning. I went
> > > > to my GP, and the first two times he wasn't
> > > > concerned. I'm
> > > > hypoglycemic, have a heart murmur, and have very low
> > > > blood
> > > > pressure. Both times, my blood sugar levels were at
> > > > the low end of
> > > > normal, and my blood pressure was around 90/60. He
> > > > said it was
> > > > probably just a combination of low blood sugar and
> > > > low blood
> > > > pressure.
> > > >
> > > > But the third time it happened, about a month and a
> > > > half ago, he
> > > > referred me to a neurologist because he was
> > > > concerned that I might
> > > > be having seizures. The EEG came up normal, but they
> > > > found
> > > > something abnormal in the MRI.
> > > >
> > > > Since then, I've had a head CT, a head CT with dye
> > > > contrast, and a
> > > > head angiogram with dye contrast. They found an AVM
> > > > about 1" x 1".
> > > > Tomorrow I go in for lab work and a 3-D CT scan, and
> > > > on May 5th I
> > > > finally see the neurosurgeon.
> > > >
> > > > I'm looking for whatever information anyone can
> > > > share because the
> > > > doctors aren't giving me much information. I got
> > > > more information
> > > > from my psychiatrist than I got from my neurologist.
> > > > I've done a
> > > > good bit of research on the internet, but I hoped
> > > > other people with
> > > > the same experiences could help me out and let me
> > > > know what to
> > > > expect.
> > > >
> > > > Thanks,
> > > > Sara
> > > >
> > > >
> > > >
> > > >
> > >
> > > __________________________________________________
> > > Do You Yahoo!?
> > > Tired of spam?  Yahoo! Mail has the best spam protection around
> > > http://mail.yahoo.com

---
Hi Sara.  Did you check the websites I emailed you?  Keep in touch.
Kaye


  In neurovascular@yahoogroups.com, "Sara" <saelenn@y...> wrote:
> Hi, Kaye.
>
> What exactly is gamma knife?  I'm not familiar with it, and I
haven't
> found anything about it in the research I've done.  Maybe you could
> give me some more details?
>
> Sara
>
> --- In neurovascular@yahoogroups.com, Kaye McIntosh <gentleo@y...>
wrote:
> > Hi Sara.  My name is Kaye.  I live in Marathon, FL(in
> > the keys).  I am 47. I don't have an AVM.  I have a CA
> > (cavernous angioma).  I was diagnosed Christmas Day.
> > Actually they thought that it was a tumor.  This
> > happened when my husband and I were visiting my family
> > in NC.  I had a grand mal seizure and was taken by
> > ambulance to the hospital.  They did a CT and it
> > showed a mass in my left temporpartial lobe.  They
> > refered me to a neurosurgeon in Cape Coral, FL( on the
> > gulf coast).  They put me on dialantin to control the
> > seizures.  I say the neuro a the first week of 1/05.
> > He did a MRI and said that it was most likely it was a
> > CA.  I was scheduled to have another MRI and MRA in
> > one month.  On 1/10/05 I started getting dizzy and
> > ended up in the local ER. My dilantin level was almost
> > nil.  They pumped me full of the stuff and kept me
> > there for 2 days.  I saw a local neurologist while
> > there who ordered another mri and an eeg.  While in
> > the hospital one of the nurses told me about a
> > neurosurgeon, Dr. Aizik Wolf from Miami, who comes to
> > Key West once a month.  I checked him out on the
> > internet and found out that he uses the gamma knife.
> > I saw him a couple of weeks later in Key West.  He
> > looked at my mri and mra and said that I was a good
> > candidate for the procedure.  I really didn't want
> > open surguery.  I don't like being cut on!  I went to
> > Doctor's Hospital in Miami on 2/22/05 and had the
> > gamma knife.  I will say it was an experience!  It
> > didn't really hurt, just a little uncomfortable.  I
> > had a followup mri last week and will see the neuro
> > next week to see what he says about it.  Hopefully the
> > gamma knife has stoped the bleeding.  I seems like it
> > works better on AVMs than CA.  Time will tell!
> > Sorry I have been so long winded.  Hope I have been
> > helpful.
> > Take care.
> > Kaye
> >
> >
> > --- Sara <saelenn@y...> wrote:
> > > Hi, my name is Sara, and I'm new here. I'm 18, and
> > > I'm a college
> > > freshman in Alabama.
> > >
> > > I recently found out that I have an AVM in my left
> > > frontal lobe. It
> > > started about a year ago when I started having
> > > random episodes where
> > > I would pass out cold for several minutes with no
> > > warning. I went
> > > to my GP, and the first two times he wasn't
> > > concerned. I'm
> > > hypoglycemic, have a heart murmur, and have very low
> > > blood
> > > pressure. Both times, my blood sugar levels were at
> > > the low end of
> > > normal, and my blood pressure was around 90/60. He
> > > said it was
> > > probably just a combination of low blood sugar and
> > > low blood
> > > pressure.
> > >
> > > But the third time it happened, about a month and a
> > > half ago, he
> > > referred me to a neurologist because he was
> > > concerned that I might
> > > be having seizures. The EEG came up normal, but they
> > > found
> > > something abnormal in the MRI.
> > >
> > > Since then, I've had a head CT, a head CT with dye
> > > contrast, and a
> > > head angiogram with dye contrast. They found an AVM
> > > about 1" x 1".
> > > Tomorrow I go in for lab work and a 3-D CT scan, and
> > > on May 5th I
> > > finally see the neurosurgeon.
> > >
> > > I'm looking for whatever information anyone can
> > > share because the
> > > doctors aren't giving me much information. I got
> > > more information
> > > from my psychiatrist than I got from my neurologist.
> > > I've done a
> > > good bit of research on the internet, but I hoped
> > > other people with
> > > the same experiences could help me out and let me
> > > know what to
> > > expect.
> > >
> > > Thanks,
> > > Sara
> > >
> > >
> > >
> > >
> >
> > __________________________________________________
> > Do You Yahoo!?
> > Tired of spam?  Yahoo! Mail has the best spam protection around
> > http://mail.yahoo.com

Hi, Kaye.

What exactly is gamma knife?  I'm not familiar with it, and I haven't
found anything about it in the research I've done.  Maybe you could
give me some more details?

Sara

--- In neurovascular@yahoogroups.com, Kaye McIntosh <gentleo@y...> wrote:
> Hi Sara.  My name is Kaye.  I live in Marathon, FL(in
> the keys).  I am 47. I don't have an AVM.  I have a CA
> (cavernous angioma).  I was diagnosed Christmas Day.
> Actually they thought that it was a tumor.  This
> happened when my husband and I were visiting my family
> in NC.  I had a grand mal seizure and was taken by
> ambulance to the hospital.  They did a CT and it
> showed a mass in my left temporpartial lobe.  They
> refered me to a neurosurgeon in Cape Coral, FL( on the
> gulf coast).  They put me on dialantin to control the
> seizures.  I say the neuro a the first week of 1/05.
> He did a MRI and said that it was most likely it was a
> CA.  I was scheduled to have another MRI and MRA in
> one month.  On 1/10/05 I started getting dizzy and
> ended up in the local ER. My dilantin level was almost
> nil.  They pumped me full of the stuff and kept me
> there for 2 days.  I saw a local neurologist while
> there who ordered another mri and an eeg.  While in
> the hospital one of the nurses told me about a
> neurosurgeon, Dr. Aizik Wolf from Miami, who comes to
> Key West once a month.  I checked him out on the
> internet and found out that he uses the gamma knife.
> I saw him a couple of weeks later in Key West.  He
> looked at my mri and mra and said that I was a good
> candidate for the procedure.  I really didn't want
> open surguery.  I don't like being cut on!  I went to
> Doctor's Hospital in Miami on 2/22/05 and had the
> gamma knife.  I will say it was an experience!  It
> didn't really hurt, just a little uncomfortable.  I
> had a followup mri last week and will see the neuro
> next week to see what he says about it.  Hopefully the
> gamma knife has stoped the bleeding.  I seems like it
> works better on AVMs than CA.  Time will tell!
> Sorry I have been so long winded.  Hope I have been
> helpful.
> Take care.
> Kaye
>
>
> --- Sara <saelenn@y...> wrote:
> > Hi, my name is Sara, and I'm new here. I'm 18, and
> > I'm a college
> > freshman in Alabama.
> >
> > I recently found out that I have an AVM in my left
> > frontal lobe. It
> > started about a year ago when I started having
> > random episodes where
> > I would pass out cold for several minutes with no
> > warning. I went
> > to my GP, and the first two times he wasn't
> > concerned. I'm
> > hypoglycemic, have a heart murmur, and have very low
> > blood
> > pressure. Both times, my blood sugar levels were at
> > the low end of
> > normal, and my blood pressure was around 90/60. He
> > said it was
> > probably just a combination of low blood sugar and
> > low blood
> > pressure.
> >
> > But the third time it happened, about a month and a
> > half ago, he
> > referred me to a neurologist because he was
> > concerned that I might
> > be having seizures. The EEG came up normal, but they
> > found
> > something abnormal in the MRI.
> >
> > Since then, I've had a head CT, a head CT with dye
> > contrast, and a
> > head angiogram with dye contrast. They found an AVM
> > about 1" x 1".
> > Tomorrow I go in for lab work and a 3-D CT scan, and
> > on May 5th I
> > finally see the neurosurgeon.
> >
> > I'm looking for whatever information anyone can
> > share because the
> > doctors aren't giving me much information. I got
> > more information
> > from my psychiatrist than I got from my neurologist.
> > I've done a
> > good bit of research on the internet, but I hoped
> > other people with
> > the same experiences could help me out and let me
> > know what to
> > expect.
> >
> > Thanks,
> > Sara
> >
> >
> >
> >
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com

Hi Sara.  My name is Kaye.  I live in Marathon, FL(in
the keys).  I am 47. I don't have an AVM.  I have a CA
(cavernous angioma).  I was diagnosed Christmas Day.
Actually they thought that it was a tumor.  This
happened when my husband and I were visiting my family
in NC.  I had a grand mal seizure and was taken by
ambulance to the hospital.  They did a CT and it
showed a mass in my left temporpartial lobe.  They
refered me to a neurosurgeon in Cape Coral, FL( on the
gulf coast).  They put me on dialantin to control the
seizures.  I say the neuro a the first week of 1/05.
He did a MRI and said that it was most likely it was a
CA.  I was scheduled to have another MRI and MRA in
one month.  On 1/10/05 I started getting dizzy and
ended up in the local ER. My dilantin level was almost
nil.  They pumped me full of the stuff and kept me
there for 2 days.  I saw a local neurologist while
there who ordered another mri and an eeg.  While in
the hospital one of the nurses told me about a
neurosurgeon, Dr. Aizik Wolf from Miami, who comes to
Key West once a month.  I checked him out on the
internet and found out that he uses the gamma knife.
I saw him a couple of weeks later in Key West.  He
looked at my mri and mra and said that I was a good
candidate for the procedure.  I really didn't want
open surguery.  I don't like being cut on!  I went to
Doctor's Hospital in Miami on 2/22/05 and had the
gamma knife.  I will say it was an experience!  It
didn't really hurt, just a little uncomfortable.  I
had a followup mri last week and will see the neuro
next week to see what he says about it.  Hopefully the
gamma knife has stoped the bleeding.  I seems like it
works better on AVMs than CA.  Time will tell!
Sorry I have been so long winded.  Hope I have been
helpful.
Take care.
Kaye


--- Sara <saelenn@...> wrote:
> Hi, my name is Sara, and I'm new here. I'm 18, and
> I'm a college
> freshman in Alabama.
>
> I recently found out that I have an AVM in my left
> frontal lobe. It
> started about a year ago when I started having
> random episodes where
> I would pass out cold for several minutes with no
> warning. I went
> to my GP, and the first two times he wasn't
> concerned. I'm
> hypoglycemic, have a heart murmur, and have very low
> blood
> pressure. Both times, my blood sugar levels were at
> the low end of
> normal, and my blood pressure was around 90/60. He
> said it was
> probably just a combination of low blood sugar and
> low blood
> pressure.
>
> But the third time it happened, about a month and a
> half ago, he
> referred me to a neurologist because he was
> concerned that I might
> be having seizures. The EEG came up normal, but they
> found
> something abnormal in the MRI.
>
> Since then, I've had a head CT, a head CT with dye
> contrast, and a
> head angiogram with dye contrast. They found an AVM
> about 1" x 1".
> Tomorrow I go in for lab work and a 3-D CT scan, and
> on May 5th I
> finally see the neurosurgeon.
>
> I'm looking for whatever information anyone can
> share because the
> doctors aren't giving me much information. I got
> more information
> from my psychiatrist than I got from my neurologist.
> I've done a
> good bit of research on the internet, but I hoped
> other people with
> the same experiences could help me out and let me
> know what to
> expect.
>
> Thanks,
> Sara
>
>
>
>

__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Hi, my name is Sara, and I'm new here. I'm 18, and I'm a college
freshman in Alabama.

I recently found out that I have an AVM in my left frontal lobe. It
started about a year ago when I started having random episodes where
I would pass out cold for several minutes with no warning. I went
to my GP, and the first two times he wasn't concerned. I'm
hypoglycemic, have a heart murmur, and have very low blood
pressure. Both times, my blood sugar levels were at the low end of
normal, and my blood pressure was around 90/60. He said it was
probably just a combination of low blood sugar and low blood
pressure.

But the third time it happened, about a month and a half ago, he
referred me to a neurologist because he was concerned that I might
be having seizures. The EEG came up normal, but they found
something abnormal in the MRI.

Since then, I've had a head CT, a head CT with dye contrast, and a
head angiogram with dye contrast. They found an AVM about 1" x 1".
Tomorrow I go in for lab work and a 3-D CT scan, and on May 5th I
finally see the neurosurgeon.

I'm looking for whatever information anyone can share because the
doctors aren't giving me much information. I got more information
from my psychiatrist than I got from my neurologist. I've done a
good bit of research on the internet, but I hoped other people with
the same experiences could help me out and let me know what to
expect.

Thanks,
Sara

Hi Tony,
Hope things are going well with you.  I had GK
yesterday.  I went in at 4am and was on my way home b4
10am.  It wasn't had.  They only pain I experenienced
me was the injection they use to numb where the put
the pins to hold the frame.  I won't lie.  That really
hurt!  what took the most time were the were waiting
for mapping and changing helments on the machine.
They have to take you out ok the machine to change
each helment and then re-attach you frame each time.
That didn't hurt.  It was just uncomfortable.
Where is your's located?  Sorry, I forgot.  When do
you go to Ucla?  In a couple weeks?
Just saw that Scott Hamilto, the iceskater, had GK on
a brain tumor recently.  He was on the Today show this
morning talking about it.
Well, take care and keep in touch.  Maybe I will catch
you on mi.
Kaye
--- kidro85@... wrote:

>
> Kaye,
>
> Hi again, its Tony, unfortunately nobody in this
> Cavernous  angioma group
> ever responds, or maybe we are the group- ha, if
> there is anybody  else the group
> then speak up.
>
> I personally going to UCLA in 3 weeks for a consult
> with the  top
> neurosurgeon there, I'll ask him about the Gamma
> Knife.
>
> I forgot, where is your CA? What part of the brain?
> and is it  within your
> brain or on the base of the brain?
>
> Good luck and write back-- Tony in Vegas -- 70 sunny
>  & clear today
>
>
>
>
> Hi there.  Anyone have had the gamma knife for
> treatment of their
> CA?  I just saw a nerosurgeon that highly
> recommended it for  mine.
> Does anyone have any information on this?  If you do
> please  let me
> know.  I see another neuro next week for his
> opinion.
> Thanks,
> Kaye
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> In a message dated 2/3/2005 3:06:13 P.M. Pacific
> Standard Time,
> gentleo@... writes:
>
> Hi  there.  Anyone have had the gamma knife for
> treatment of their
> CA?  I just saw a nerosurgeon that highly
> recommended it for  mine.
> Does anyone have any information on this?  If you do
>  please let me
> know.  I see another neuro next week for his
> opinion.
> Thanks,
> Kaye
>
>
>
>
>
>


__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Hey!  I am scheduled to have GK on my CA on 2/22.  Anyone know what I
should do before and during?

-----Original Message-----
From: gentleo [mailto:gentleo@...]
Sent: Thursday, February 03, 2005 5:40 PM
To: neurovascular@yahoogroups.com
Subject: [neurovascular] Gamma Knife

Hi there.  Anyone have had the gamma knife for treatment of their
CA?  I just saw a nerosurgeon that highly recommended it for mine. 
Does anyone have any information on this?  If you do please let me
know.  I see another neuro next week for his opinion.
Thanks,
Kaye





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Kaye,

 

Hi again, its Tony, unfortunately nobody in this Cavernous angioma group ever responds, or maybe we are the group- ha, if there is anybody else the group then speak up.

 

I personally going to UCLA in 3 weeks for a consult with the top neurosurgeon there, I'll ask him about the Gamma Knife.

 

I forgot, where is your CA? What part of the brain? and is it within your brain or on the base of the brain?

 

Good luck and write back-- Tony in Vegas -- 70 sunny & clear today

 

 

 

 

Hi there.  Anyone have had the gamma knife for treatment of their
CA?  I just saw a nerosurgeon that highly recommended it for mine. 
Does anyone have any information on this?  If you do please let me
know.  I see another neuro next week for his opinion.
Thanks,
Kaye

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

In a message dated 2/3/2005 3:06:13 P.M. Pacific Standard Time, gentleo@... writes:

Hi there.  Anyone have had the gamma knife for treatment of their
CA?  I just saw a nerosurgeon that highly recommended it for mine. 
Does anyone have any information on this?  If you do please let me
know.  I see another neuro next week for his opinion.
Thanks,
Kaye

 

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Hi there.  Anyone have had the gamma knife for treatment of their
CA?  I just saw a nerosurgeon that highly recommended it for mine.
Does anyone have any information on this?  If you do please let me
know.  I see another neuro next week for his opinion.
Thanks,
Kaye

Hi group.  I am Kaye.  I have a cavernous angioma in my left temporal
lobe.  It is 2cm.  I had a seizure Christmas.  Medication have the
seizures under control, for now.  I have had several MRIs and had a
MRA last week.  I see another neurosurgeon Wed.
Can anyone share their experiences and treatments with me?  I am very
anxious.  Please e-mail me at gentleo@....
Thanks,

Kaye

I was diagnosed with CA after a bleed in 1994.  I bled again in 1998
after I discovered I was pregnant.  Saw doctor at Emory University
in Atlanta, GA and was told it was not operable because of the
location.  Symptoms are numbness and weakness on right side.  Some
balance problems, vision problems (double).  Anyone out there with
the same symptoms and that can give me some advice, I would welcome
it.

-----Original Message-----
From: B.J. [mailto:bjc112876@...]
Sent: Monday, October 20, 2003 2:26 AM
To: neurovascular@yahoogroups.com
Subject: [neurovascular] hi..anyone have Cavernous Angioma?

Hi,

  My Mom was just diagnosised with Cavernous Angioma, she has
seizures with it. She is now having a third medical opinion because
the previous two were terrible doctors, one of which left her alone
on the exam table while she was having one.
  Is there anyone out there who has this? She got it as an adult, a
sudden onset. I have found a few websites but no "one on one" contact
with anyone who has it.
You can either e-mail me directly or post on the site.
thank you-
bj




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From: B.J.

To: neurovascular@yahoogroups.com

Sent: Monday, October 20, 2003 3:25 AM

Subject: [neurovascular] hi..anyone have Cavernous Angioma?

Hi,

  My Mom was just diagnosised with Cavernous Angioma, she has
seizures with it. She is now having a third medical opinion because
the previous two were terrible doctors, one of which left her alone
on the exam table while she was having one.
  Is there anyone out there who has this? She got it as an adult, a
sudden onset. I have found a few websites but no "one on one" contact
with anyone who has it.
You can either e-mail me directly or post on the site.
thank you-
bj




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Hi,

   My Mom was just diagnosised with Cavernous Angioma, she has
seizures with it. She is now having a third medical opinion because
the previous two were terrible doctors, one of which left her alone
on the exam table while she was having one.
   Is there anyone out there who has this? She got it as an adult, a
sudden onset. I have found a few websites but no "one on one" contact
with anyone who has it.
You can either e-mail me directly or post on the site.
thank you-
bj

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----- Original Message -----

From: Scott & Kristi Pahnke

To: neurovascular@yahoogroups.com

Sent: Tuesday, April 02, 2002 9:41 AM

Subject: Re: [neurovascular] New to group!

OOPS! Now that I am reading other stories I realize this isn't the right place for me. My daughter has Pulmonary AVM. Sorry about that. :o(

 

Kris
Scott
Jordan (5)
Hayleigh (22 Months)

----- Original Message -----

From: Scott & Kristi Pahnke

To: neurovascular@yahoogroups.com

Sent: Tuesday, April 02, 2002 9:34 AM

Subject: [neurovascular] New to group!

Hello! My name is Kris. I am the Mom of 2. Jordan is 5 and Hayleigh is 23 months.I am absolutely amazed that I finally found a group for rare neurovascular disorders! My daughter Hayleigh was diagnosed with AVM last month after a 2 week stay in the children's hospital for Pneumonia and RSV (She also has asthma) They could not figure out why Her 02 levels were so low (staying around 73 but sometimes down to 68) They had Her on tons of different antibiotics and asthma meds to see if they would help. She was on a continuous nebulizer with up to 11 liters of 100% oxygen and Her levels remained low. They did every test they could think of and took more blood form Her little hands and arms than I thought was possible. They finally did a CAT scan on Her lungs and found the problem, but wanted to make sure so they did another CAT scan and injected dye into Her lungs. They found the AMV and did a Cardiac Catheterization that day. She had 14 metal coils inserted into the malformation. This Children's Hospital is well equipped for rare conditions and has seen just about everything, but they said they have not seen this in 10 years. They used Her case in a study at the hospital and a presentation at a Cardiac conference. I'm just amazed out how rare it really is. So anyway, She is now on baby aspirin every day to thin Her blood and Also Singulair and Pulmicort via the nebulizer every night for her asthma. It's so hard having a "sick" child. She has to see Her pulmonary specialist every 3 months, Her Cardiac Surgeon every 6 months, and a genetics specialist (although I'm not sure why. I was getting way too much info at once and I can't remember what that was for. Anyone know?) Sorry to ramble on. I am just SO glad I have a place to go to talk to people who understand!

 

I'm pretty worried right now because She has Her first outpatient visit with the Cardiac Surgeon next Monday. He will be checking to see if more malformations have appeared and they will be checking every 6 months after that. The surgeon said He saw quite a few small ones that may get bigger and need to be fixed, but if He has to keep fixing them then it will result in a lung transplant. I'm very scared of the possibilities. I'm so paranoid these days. I'm constantly checking Her breathing, checking Her fingernails, toenails and lips to make sure they aren't blue like they were, and I have Her sleeping with me now (She'll be 2 on the 21st) Is anyone else going through this? I don't know how many of you on here have children with this condition (or any type of neurovascular condition) But it's hard to go through all this worrying.

 

Ok, I'll stop "talking" now, LOL! I'm sorry this was so long. Like I said I'm just so happy to know there are some out there who understand. Thanks for reading! :o)

 

Kris
Scott
Jordan (5)
Hayleigh (22 Months)

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----- Original Message -----

From: Scott & Kristi Pahnke

To: neurovascular@yahoogroups.com

Sent: Tuesday, April 02, 2002 9:34 AM

Subject: [neurovascular] New to group!

Hello! My name is Kris. I am the Mom of 2. Jordan is 5 and Hayleigh is 23 months.I am absolutely amazed that I finally found a group for rare neurovascular disorders! My daughter Hayleigh was diagnosed with AVM last month after a 2 week stay in the children's hospital for Pneumonia and RSV (She also has asthma) They could not figure out why Her 02 levels were so low (staying around 73 but sometimes down to 68) They had Her on tons of different antibiotics and asthma meds to see if they would help. She was on a continuous nebulizer with up to 11 liters of 100% oxygen and Her levels remained low. They did every test they could think of and took more blood form Her little hands and arms than I thought was possible. They finally did a CAT scan on Her lungs and found the problem, but wanted to make sure so they did another CAT scan and injected dye into Her lungs. They found the AMV and did a Cardiac Catheterization that day. She had 14 metal coils inserted into the malformation. This Children's Hospital is well equipped for rare conditions and has seen just about everything, but they said they have not seen this in 10 years. They used Her case in a study at the hospital and a presentation at a Cardiac conference. I'm just amazed out how rare it really is. So anyway, She is now on baby aspirin every day to thin Her blood and Also Singulair and Pulmicort via the nebulizer every night for her asthma. It's so hard having a "sick" child. She has to see Her pulmonary specialist every 3 months, Her Cardiac Surgeon every 6 months, and a genetics specialist (although I'm not sure why. I was getting way too much info at once and I can't remember what that was for. Anyone know?) Sorry to ramble on. I am just SO glad I have a place to go to talk to people who understand!

 

I'm pretty worried right now because She has Her first outpatient visit with the Cardiac Surgeon next Monday. He will be checking to see if more malformations have appeared and they will be checking every 6 months after that. The surgeon said He saw quite a few small ones that may get bigger and need to be fixed, but if He has to keep fixing them then it will result in a lung transplant. I'm very scared of the possibilities. I'm so paranoid these days. I'm constantly checking Her breathing, checking Her fingernails, toenails and lips to make sure they aren't blue like they were, and I have Her sleeping with me now (She'll be 2 on the 21st) Is anyone else going through this? I don't know how many of you on here have children with this condition (or any type of neurovascular condition) But it's hard to go through all this worrying.

 

Ok, I'll stop "talking" now, LOL! I'm sorry this was so long. Like I said I'm just so happy to know there are some out there who understand. Thanks for reading! :o)

 

Kris
Scott
Jordan (5)
Hayleigh (22 Months)

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Just by luck, I ran across this group and I am so glad I found you.

I was diagnosed approximately three months ago with what my
neurologist and neurosurgeon consider as an inoperable capillary
telangiectasia of the pons. I am a 47-year-old, fairly healthy
female, that has developed symptoms that have been ongoing now for
over a year, which I thought were attributable to severe
environmental allergies that I have and/or sinus problems but my
allergist strongly advised I see my family physician who referred me
on to a neurologist.

I saw a neurologist in 11/01 who ordered a MRI and a 5 mm capillary
telangiectasia on the anterior midline of the pons of the brain stem
was discovered; there appeared to be no evidence of multiple
sclerosis which we were suspicious for.

Over a year ago, the symptoms first began as just a tingling under my
left eye which progressed to tingling in various areas on the entire
left side of my face and then a numbness/decrease in sensation on
much of the left side of my face which continues. I also have had and
still do, but to a lesser degree, ringing and occluded hearing in my
left ear and shooting pain which also now occurs occasionally in my
right ear, both on an intermittent basis. I get intermittent shooting
pains in each side of my head. My balance has been off and I feel
dizzy intermittently. I have developed carsickness when on long
rides, particuarly on the freeway. I have had an occasional feeling
of weakness in my limbs on the left side. My memory/thought process
seems impaired also.

The tingling and prickly-like feeling has progressed on to many
different parts of my body, including my hands and feet, mainly on
the left side but now includes the right side. Recently, I have
developed shooting/stabbing, electrical-like sensations in the ends
of several of my fingers and toes intermittently that can last
several minutes now and is quite uncomfortable at times. It has even
awakened me. I am having one form of sensation or another going on
almost continuously now. I am quite concerned about possible
hemorrhage. I do not know yet what treatment options are available to
me, if any. I am planning to have all my medical records, MRIs, MRAs,
etc. sent on to a neurosurgeon who specializes in venous
malformations and has reportedly done over 200 surgeries on the brain
stem for these.

I would be very interested in hearing of other's symptoms that
have/had a capillary telangiectasia on the pons of the brain stem
and/or what treatment they have undergone. Any information at all
would be sincerely appreciated.

Sandi

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I know that AVM's are very rare, but I was surprised to find so few
members in this group.  My daughter had an episode where her AVM
ruptured and was temporarily paralyzed on her right side and lost her
ability to speak.  It was a very traumatic time for our family.  She
eventually had the Gamma Knife surgery, which 3 years later after many
follow-up angiograms, revealed that it had not worked and that the AVM
was still there.  We again tried the Gamma Knife and do not know yet
if it has obliterated.  We will have our first angio. in July of 2002.
She will be 8 at that time.  These have been hard years with all of
the waiting and praying.  If there are others with children that have
an AVM or similar story, I would be interested.  My prayers are with
each and every one of you.  You are survivors.

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Lara,

Sorry to see this group has not taken off, but I was glad to come
across it nonetheless.  I was diagnosed w/a CA in my right parietal
motor strip after a major bleed in 12/96.  I have found some
information, but no other young women who share my experience.  I can
totally relate to your history.  If you would like to compare notes,
feel free to contact me.  I'd love to swap brain bleed stories (ha ha
ha)!

Michelle

I've been sick for five years now - for the first two and a half the doctors
kept on telling me I was just crazy - and then I walked into the doctors office
having had a brain hemorrhage at age 26.  Of course, what did my doctor do? 
Told me to wait three weeks until I could see a neuro!  As I had all the
symptoms of a stroke!  Needless to say, as far as I'm concerned, that doc is
history (not that the others are anything other than marginally more helpful).

Here's the deal... I was driving (!) down the highway one day and all of a
sudden I couldn't feel half my face - it felt rather like it was sliding off of
my skull.  Then the vision went.  I get rather what I can only describe as
kaleidescopic vision.  I saw eight -- that's right eight (I counted) -- of
everything.  All arranged in this tidy little circle so I'd sort of just try to
aim for the middle and pray.  Thank God, I did make it home in one piece.  This
lovely vision thing lasted, BTW, about a year but seems to finally have resolved
itself.   I got a really lousy taste in my mouth (I remember describing it as
tasing like "desalinated water from Boston Harbor or the Charles River before
they cleaned it up."  Note: They used to dump raw sewage in the river and
harbor!)  And I also got really confused.   I literally thought I was imagining
things  for days.  Why my ex didn't take one look at me and get me to the ER
I'll never know... but I was walking and talking.

A couple of weeks later when I'd finally had enough messing around out here in
the suburbs I got my tuckus into the New England Medical Center.  Would you
believe the only way I could get in there was to call up their Lyme Disease
program and say "half my face is paralyzed and I'm sick.  I'm concerned about
Lyme Disease."???   Even THEY were going to send me home with no idea what was
wrong.  But I threatened to throw a hissy fit.  I looked at the resident, tears
in my eyes, and said "Look, something is very very wrong here.  Someone has GOT
to figure out what is going on."  He took pity on me and got me an appointment
with the head of their neuro-opthamalogy department that afternoon (even he
could see there was something really wrong with my vision).  And then the fun
began!

It is NEVER a good thing when you're at a major teaching hospital and they start
asking if they can drag every med student from here to Timbuktoo in to take a
look at you.  Now I think I was a good sport -- but it is still pretty
disconcerting.  Oh yeah, and I became an extremely underpaid model too, for out
came the cameras.  I think I was a teaching case (I hope they sent copies to the
resident who was going to send me home).  Actually, I know I was - some intern
had to do this whole big presentation.  Anyway, the neuro-opthamologist called
down to their radiology department but they were really backed up.  So he sent
me home but said "you have to come back at 10pm tonight for an MRI.  I don't
want you waiting until morning."  It was the first available slot.  LOL, would
you believe they made me have an MRI in their childrens machine?  There I was in
this tiny machine (if you think the ones for grown-ups are bad... you wouldn't
believe how they had to wedge me in there... at least I didn't have
claustrophobia too badly) with only Barney the Dinosaur to look at and I think
there were some Teletubbies around as well.  At least I knew this guy was
serious.

The next morning the neuro-op called me at 8am and said that he had made an
appointment for me with a collegue for that afternoon.  Of course, when I got
there I discovered this colleague was a neurosurgeon.  On the basis of the MRI
he told me that I had a cavernous angioma, which is a neurovascular disorder,
sitting in my brainstem.  Now you're going to think I'm nuts here, but I started
getting recurring dreams that I needed brain surgery when I was 17.  When they
said they could remove it I told them to do so -- pronto!  Believe me, my only
medical experience has been as a patient, but when I saw the MRI the first thing
I said was "What is THAT?"  Apparently blood makes a quite effective contrast on
an MRI.  My neuro even told me how considerate I was to provide my own contrast
*giggle*.  After a second (and third, and fourth) opinion - just to make sure -
I went ahead with the surgery.

My neuro says a cavernous angioma is a vascular disorder where there is a
cluster of immature, almost embryonic, blood vessels.  Have you ever seen a
port-wine stain or perhaps a baby that has a huge strawberry mark?  It is sort
of similar, only mine is sitting right in the middle of my midbrain.  What
happens is occasionally the blood vessels "leak," causing a hemorrhage.  The
consequences, of course, depend on the location of the lesion and the size of
the hemorrhage.  For example, if mine were just about anywhere else in my brain
(i.e. outside the midbrain) I'd probably have epilepsy (or at least seizures)
but I don't because of where it is located.  On the other hand, the brainstem
isn't exactly a good place to be having bleeds.  Do you remember the track star
Florence Griffith Joyner?  She died of this... although I seem to remember that
she died because she had a seizure in her sleep and suffocated herself.  You
have no idea how angry that makes me because the first thing that should be done
when someone has a seizure (she'd had one before) is an MRI for this very
reason.  If it is outside the midbrain (mine was supposedly right at the surface
of it where it would be difficult but possible to remove) it is pretty much
possible to remove... it might have ended her career because there certainly are
consequences to the surgery but at least she would still be alive!

Anyway, the day after the surgery my doc told me that they COULDN'T FIND the
darned thing, that I do have a venous angioma (a closely related disorder of
just a vein) but couldn't find the cavernous angioma.  Here's the thing.  Venous
angiomas don't bleed like cavernous ones do.  Just to make me feel better (HA!)
the docs sit there and quote me the annual rebleed rate.  So, either I'm just
weird (a distinct possibility) and don't actually have a cavernous angioma but
rather just a venous one or... it is there but too deeply lodged in the midbrain
to get at.  Supposedly they've done studies of people at autopsy who have had
bleeds where they couldn't find it (Can you imagine?  They study the poor people
who first have to deal with a brain hemorrhage, recover, and then GET HIT BY A
BUS or something... Now THAT is really really bad luck!) and in something like
98% they did find a cavernous angioma associated with the venous angioma that
they just couldn't find...  For obvious reasons they don't exactly like to root
around in someone's brainstem while they are still using it...


What really annoys me is that when I first got sick in '94 my doc (the good one
before I moved) scratched his head and actually said "You're behaving like you
have some sort of brain lesion."   And then they did an MRI and MISSED it.  So I
was told I was crazy for years for no good reason...

Please feel free to email me.  I'd love to hear your story.  I have a feeling
there's more to these angiomas than the neuros actually believe.  After all,
they're still trying to tell me my migraines - which they claim aren't actual
migraines for some reason (probably because they wouldn't treat them for three
years despite my literally breaking down in tears when I would describe how bad
and how frequent they were) - are unrelated (?????) to my neurovascular
condition.  Funny thing is that imitrex, which only works on migraines, helps
me.  Or at least it used to.  It's efficacy seems to be wearing down a bit over
the years.

Oh, (*giggle* you see I can be quite the windbag once I get going) I have done
some (albeit amateurish) research... Perhaps we could compare notes/ bookmarks/
thoughts on the subject?

-Lara