See what I mean? The old school Neurologists aren't willing to admit
that angiomas are responsible for your symptoms even though they can's
scientifically or medically determine what else may be causing them.

Doctors aren't necessarily concerned...it's not their head...it's
yours...I requested the yearly MRI's myself but you could do  them less
frequently if you feel more comfortable with that...I can understand
high deductibles, It's more of a precautionary thing so to speak...if
there are any changes to your angiomas at all you will be aware of
them. Might be some thing they can do before the time comes where they
very possibly can't. I'm not trying to scare you and most people live
out their lives without anything ever happeneing but I've known three
close people who took this nonchalantly and they are no longer here. I
should also mention that their docs didn't think there was a major
problem either. Things tend to turn around fast...

It's not necessarily true that venous angiomas don't cause symptoms
because many of us out there are finding that they in fact do. On top
of the typical head aches there is also vertigo ,numbness in
extremities and a few others that some have mentioned. I myself have
experienced the vertigo which by the way was tested in every way
possible to rule out every other reason of cause and the headaches
which for years were just written off as migrains. Many of your old
school neurologists don't want to accept this as fact as it's not
textbook but the newer neuroloical studies are changing their way of
thinking and as my neurologist tells me she is learning along with me
as not enough is known about brain angiomas and what they thought they
knew...we are now rewriting the book...

Hi Patti,

It's important to differentiate between a venous angioma and a cavernous
angioma.  Do you know which you have?  A venous angioma is a vein that is
somewhat misformed but is doing a normal function.  Many people have them (up to
10% of the population), and they usually don't cause problems.

A cavernous angioma is somewhat different.  It is a raspberry-shaped vascular
malformation that can create some problems down the road.  When a neurologist
says that the angioma is benign, he probably means that it is not a cancer - by
definition, this is true.  He may also mean that it has not had a bleed.  It's
thought that 50% of people with cavernous angiomas never know that they have
them because they have no symptoms.  What is of concern in your case is that you
have more than one.  If these are cavernous angiomas rather than venous angiomas
or a cavernous/venous angioma combination, this is a strong sign that the
condition may be genetic and that other members of your immediate family could
have the illness as well.  With the genetic form, each child of a person with
the illness has a 50/50 chance of having the illness.  Unfortunately, many
neurologists are not familiar with this fact or don't feel they need to share
this.

If you are not sure about whether you have a venous or cavernous angioma, please
call your doctor or get a copy of your MRI report.  Also, there is a good deal
of information about cavernous angiomas and some info about venous angiomas at
the Angioma Alliance website, www.AngiomaAlliance.org.

Connie Lee
President
Angioma Alliance


---- pmbeers2000 <PMbeers@...> wrote:
> By accident my neurologist found from a MRI that I have two angiomas in
> my brain.  I had a follow up CT scan that showed that they are benign.
> I have not found much information on the internet about angiomas at
> all.  Can anyone tell me what is the difference between a benign
> angioma and one that is not benign?  All my doctor told me was keep my
> blood pressure normal and let him know if I have any bad headaches.
>
> =Patti
>
>
>

--- In neurovascular@yahoogroups.com, "pmbeers2000" <PMbeers@...> wrote:
>A benign angioma basically means that their are no cavernomas at this
time. Your vessels are strong and you are in no danger of a bleed or a
rupture. That is good news...Do keep an eye on your blood pressure, be
aware of headaches that seem out of the ordinary and try to get a doc
to do regular MRIs or ct scans like maybe yearly. I have mine done
yearly as my neurlologist is very good at keeping up with my
checkups...Glad to see that someone is posting on this site again...not
alot of activity here...
> By accident my neurologist found from a MRI that I have two angiomas
in
> my brain.  I had a follow up CT scan that showed that they are
benign.
> I have not found much information on the internet about angiomas at
> all.  Can anyone tell me what is the difference between a benign
> angioma and one that is not benign?  All my doctor told me was keep
my
> blood pressure normal and let him know if I have any bad headaches.
>
> =Patti
>

By accident my neurologist found from a MRI that I have two angiomas in
my brain.  I had a follow up CT scan that showed that they are benign.
I have not found much information on the internet about angiomas at
all.  Can anyone tell me what is the difference between a benign
angioma and one that is not benign?  All my doctor told me was keep my
blood pressure normal and let him know if I have any bad headaches.

=Patti

I posted you a response a few days ago but it didn't show up so i don't
know if you received it or not but I wanted to thank you for responding
to my post. You said in your post that you pretty much have to deal
with your bouts of dizziness on your own. Your docs haven't given you
the option of medication to help you out with that? Granted that most
the normal meds don't help beleive me I've tried them but I'm on 100mg
of Topamax now that thankfully has kept the severe attacks of vertigo
at bay for about two and a half years now as well as the headaches.a
twofur if you will...It has virtually changed my life for which I am
grateful. Up until we hit on that med I didn't know if I would ever
live a "normal" life again. I will occasionally get the aura of
floating on water and then the feeling of my brain shaking around
inside my head...lasts about a minute or two and happens when I'm over
tired and there is no pain involved just the feeling...but that has yet
to be explained. But Ask you docs about Topamax or even Dilantin which
are both seizure meds but have been very good with vertigo in
studies...might help you out...And thanks again for writing...it's
kinda nice to find a "sister" out there...

I have the same thing at left lateral ventricle; I have bouts of
extreme vertigo and paresthesia on opposite side (numbness). I
definitely have spells of extreme dizziness and balance issues that
I've had since early 20s; I saw two neurosurgeons that told me to
live with these symptoms (said it could be caused by large angioma);
mine cannot be operated on no matter what (it is deep in white
matter). It is not cavernous and has not changed for 11 years (11
years ago I had a slight bleed; It was similiar to a small stroke;
although this is very rare with angiomas that are not cavernous). I
have an MRI every year. Good luck with symptoms. On dizzy days, I try
not to drive too much; I rest.



--- In neurovascular@yahoogroups.com, "mamapoulette"
<vmcnierney8743@...> wrote:
>
> I was diagnosed with a venous angioma in the front left temporal
lobe
> of my brain about three years ago now. Doctors in my area have told
me
> that it probably wouldn't have been found as these things don't
have
> symptoms as a rule but mine did. It's not cavernous at this point
and
> my neurologist monitors it with yearly MRIs but after years of
> intolerable headaches which were written off as migrains I came
down
> with a month long bout of vertigo with no cure, followed by another
one
> three months later. It took many months of playing with the right
meds
> and many many tests to rule out every known thing known to cause
> balance failure the doctors could come up with and the doctors are
> still not ready to say that this unusual vein pattern in my head
could
> have caused it. To this day if I try to back off the medication
which
> is now 100mg of Topamax (which thankfully controls the headaches
and
> keeps me on my feet upright)I will still lose my balance and spin
like
> a top. Does anyone else out there have a similar story? Because
from
> what I've learned the neurologists really don't know too much about
> this type of thing except that it's better off left alone unless it
> becomes cavernous.And then a person pretty much is left to feel as
> though they have a time bomb ticking away inside their head.
>

I was diagnosed with a venous angioma in the front left temporal lobe
of my brain about three years ago now. Doctors in my area have told me
that it probably wouldn't have been found as these things don't have
symptoms as a rule but mine did. It's not cavernous at this point and
my neurologist monitors it with yearly MRIs but after years of
intolerable headaches which were written off as migrains I came down
with a month long bout of vertigo with no cure, followed by another one
three months later. It took many months of playing with the right meds
and many many tests to rule out every known thing known to cause
balance failure the doctors could come up with and the doctors are
still not ready to say that this unusual vein pattern in my head could
have caused it. To this day if I try to back off the medication which
is now 100mg of Topamax (which thankfully controls the headaches and
keeps me on my feet upright)I will still lose my balance and spin like
a top. Does anyone else out there have a similar story? Because from
what I've learned the neurologists really don't know too much about
this type of thing except that it's better off left alone unless it
becomes cavernous.And then a person pretty much is left to feel as
though they have a time bomb ticking away inside their head.

I am new to this group.  My name is Patricia (Tricia) and I have
been searching for a support group now for a couple of months, and
do not really know if this is the correct one for me.   On Feb. 7th
2006, I went to the emergency room with the worst headache I had
ever had in my life.  Long long story short, after 6 days of many
tests, and steroid medication to shrink swelling in my brain, i was
scheduled and had brain surgery for what my Doctor called a
cavernous angioma. My surgery was in the back left side of my skull
and brain.   I have a long incision from the top of my head to half
way down my neck. My surgery was very sucessful, and my recovery has
been quite sucessful as well.  Apparently I am quite lucky to not
have had any neurological damages and to have been able to get up
and walk and do things as early on as I have been able to.  This is
actually where I am struggling.   It has now been six months since
my surgery, and I am still having a lot of pain.   I still am
extremely tired, and barely make it through work days.   In fact, I
go to work and have to leave early many days, and other days, I just
am not able to go to work.   I have had my final MRI, and all is
well and looking good.   I have had some fluid build up in my skull,
which at first was a concern, but it clears itself up now on its
own, so I am not in any need of a shunt.   MOst days I am able to be
extremely grateful for having survived, and having had such good
recovery, but some days, dealing with the pain on a regular basis, I
just get so overwhelmed.   I was told that it takes 6 months to a
year to feel much better, and I guess that since I have hit the 6
month point, I was hoping I would somehow feel miracously better. Is
it still normal to be this tired, and to still have a lot of pain as
well as crazy emotions that leave me wanting to cry at the drop of a
hat? I was an avid runner before this happened, and so being so
inactive has been quite a challenge for me.
  Any feedback is greatly appreciated and thanks ahead of time.

Tricia

I hate doctors!  It seems they play like they know it all, yet really
know nothing.  First dr says meds because it is causing his seizures
(which only causes trembling and numbness in the hands).  Then says
have to get MRA and see neurosurgeon.
Now, dr changed mind.  Just take meds, no MRA and if we see a
neurosurgeon, they usually don't do anything for this problem.
Any advice?
Do surgeons fix something like this?
Can it get worse?
Is it worth taking the meds for such a small problem?
SO FRUSTRATING!

Hi all,

it's nice to find this group and i'm amazed it's so small (another
group i'm in for APS started 'round the same time and has 900
members).

I was just wondering if i threw myself out there whether there was
anyone who could tell me anything (thank you in advance!!!). i'm 24
female and diagnosed with chronic fatigue syndrome or CFS in 2001. i
had one MRI done in april 2001 which showed i had i quote: "A few
small blood vessels are noted in the postero-infero-medial part of
the left basal ganglia and a larger blood vessel is seen running
interiorly from this region. The findings are suggesting a venous
angioma in this region."

Recently i have re opened investigation into myself as for a long
time my family told me to give up investigating but i have been
having such severe migraines and neurological symptoms that i just
knew inside something was wrong with my brain, i didn't know what.

i was first made aware of the auto immune disease Hughes Syndrome or
antiphospholipid syndrome and read on that. i found from APS patients
how important it was to have an MRI so i dug my report out as said
above and read those two lines for the first time. Prior to this I
was told my scan was "normal" and now i can only kick myself for my
stupidity.

i was wondering what anyone thought of my case and how i should go
about investigating further. what should I do?

VL

This message is about Human beings, Democracy, UNHCR, Refugees, The Iraqis,
Islam, Kurds, Human rights, Respect, Money, Donations, Angelina Jolie,
Pavarotti, Giorgio Armani, Donors, Peace, History, Campaigns and about you if
you care about these words.

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the rest of this message as web page.

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For more info about UNHCR and life of refugees you can read my free ebooks. I
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about me, you can google for my name 'osam altaee'.

Thanks
THE TRUTH WARRIOR
http://un4.e2u.cc

Enter your vote today!  A new poll has been created for the
neurovascular group:

IF YOU HAVE BEEN DIAGNOSED WITH A VENOUS ANGIOMA OF THE BRAIN,
WHAT PART OF THE BRAIN IS IT LOCATED IN?

   o FRONTAL
   o PARIETAL
   o TEMPORAL
   o OCCIPITAL
   o CEREBELLUM
   o PONS
   o MEDULLA
   o BRAINSTEM
   o SPINE
   o OTHER


To vote, please visit the following web page:
http://groups.yahoo.com/group/neurovascular/surveys?id=2101746

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

Thanks!

Enter your vote today!  A new poll has been created for the
neurovascular group:

IF YOU HAVE BEEN DIAGNOSED WITH A VENOUS ANGIOMA OF THE BRAIN,
WHAT TYPES OF THE FOLLOWING SYMPTOMS ARE YOU HAVING?

   o NONE
   o HEADACHES
   o SEIZURES
   o VERTIGO
   o NAUSEA
   o INTRACRANIAL PRESSURE
   o VISION PROBLEMS
   o HEARING PROBLEM
   o DROWSINESS
   o URINARY  PROBLEMS


To vote, please visit the following web page:
http://groups.yahoo.com/group/neurovascular/surveys?id=2101742

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

Thanks!

It all can be very confusing for us as patients and I don't really feel the
doctors all agree on the diagnosis/prognosis just due to our conditions
being so "new" to them and they really don't know all about these problems
yet. From what I have learned, the white spots could mean the start the of
MS.

I have a SIL who works for a neurologist and that is what she tells me they
look for first in MS patients.

I hope you get some definitive answers but don't be surprised if a lot of
what you get told seems to be confusing, unfortunately.

I certainly would continue to have regular MRIs (yearly at least) with
contrast to keep a close check on all these findings, particularly if you
begin to show more "white spots" on the MRI. I have a friend who has MS and
this seems to be what appears with MS from my understanding.

Best wishes,
Sandi
----- Original Message -----
From: "cholm5" <arenzano1@...>
To: <neurovascular@yahoogroups.com>
Sent: Friday, September 09, 2005 12:30 AM
Subject: [neurovascular] Venous angioma and "white spots"


> Hi,
>
> I'm so glad to have found this group!
>
> I have a Venous Angioma in my left frontal lobe, and also a "white
> spot" on each lobe (looked like the size of a pea).  (I had an MRI
> very recently, with contrast.)
>
> Supposedly they don't mean anything? The VA poses no risk, neither do
> the white spots, and the VA does not emit the seizures....so one
> doctor says.  The others say that the Venous Angioma IS where my aura
> seizures are coming from.  Websites tell me the Venous Angiomas are
> synonymous with AVMs, and the "white spots" could mean the start of MS?
>
> It's all very confusing!
>
> Anyone have any experience with anything like this?  I want to sort
> this all out.
> Thank you,
> Chrisanne in MN
>
>
>
>
>
> Community email addresses:
>  Post message: neurovascular@onelist.com
>  Subscribe:    neurovascular-subscribe@onelist.com
>  Unsubscribe:  neurovascular-unsubscribe@onelist.com
>  List owner:   neurovascular-owner@onelist.com
>
> Shortcut URL to this page:
>  http://www.onelist.com/community/neurovascular
> Yahoo! Groups Links
>
>
>
>
>
>
>
>

Hi,

I'm so glad to have found this group!

I have a Venous Angioma in my left frontal lobe, and also a "white
spot" on each lobe (looked like the size of a pea).  (I had an MRI
very recently, with contrast.)

Supposedly they don't mean anything? The VA poses no risk, neither do
the white spots, and the VA does not emit the seizures....so one
doctor says.  The others say that the Venous Angioma IS where my aura
seizures are coming from.  Websites tell me the Venous Angiomas are
synonymous with AVMs, and the "white spots" could mean the start of MS?

It's all very confusing!

Anyone have any experience with anything like this?  I want to sort
this all out.
Thank you,
Chrisanne in MN

Glad I could be a little help.  The second opinion
should give you the confidence you need to make a
decision.  Good luck and keep us posted.  Vascular
malformations have slowly been gaining the attention
of the medical community, so will be good to learn
what the latest treatment options.

Cheryl

--- moonbeam611@... wrote:

> Cheryl, thank you so much for your insights about
> all of this.  We are so confused and just want some
> answers.  Our present plan is to see what the
> Cincinnati clinic has to say and then get a second
> opinion, probably from boston.  Thanks again.  It
> feels good to have a plan and to be heading in the
> right direction.
>
> Darla
>
> ---- neurovascular@yahoogroups.com wrote:
> >
> > There is 1 message in this issue.
> >
> > Topics in this digest:
> >
> >       1. Re: new to this group -- 2 year old son
> with vascular malformations
> >            From: Cheryl Kotan
> <radiantgreen@...>
> >
> >
> >
>
________________________________________________________________________
> >
>
________________________________________________________________________
> >
> > Message: 1
> >    Date: Sat, 20 Aug 2005 10:12:53 -0700 (PDT)
> >    From: Cheryl Kotan <radiantgreen@...>
> > Subject: Re: new to this group -- 2 year old son
> with vascular malformations
> >
> >
> > Hi Darla, my name's Cheryl.  I saw your posting
> and
> > thought I'd send you some information to look
> into.
> > I'm going to give you my story first, then refer
> you
> > to a couple of vascular malformation specialists I
> > know of.  I am by no means an expert, but I do
> know
> > that vascular malformations are rare and doctors
> > familiar with proper treatment are hard to find.
> >
> > I was born with a venous malformation in my right
> > neck, jaw, and tongue. It really became noticeable
> > when I reached puberty (hormonal changes make them
> > grow) and my parents took me to an ENT to get it
> > checked out.  He diagnosed it as a cavernous
> > hemangioma, and surgically removed it.  When I was
> a
> > senior in high school, I felt as though it had
> come
> > back, but the ENT doctor said "You have a
> cavernous
> > hemangioma.  They don't grow back.  If you don't
> like
> > how it looks, go see a plastic surgeon."  Well, I
> did,
> > and the plastic surgeon diagnosed me (correctly)
> with
> > a venous malformation.  He told me there were 2
> > facilities that he knew of in the US that
> specialize
> > in vascular malformations:  one in Denver, CO and
> one
> > in Boston, MA.
> >
> > Given Trent’s age, you could try the Vascular
> > Anomalies Center (VAC) at Children's Hospital in
> > Boston, MA.  They specialize in pediatric vascular
> > malformations, including those in the brain.  I
> have
> > not been there, but know people who have.  They
> speak
> > very highly of them.  Here is their web site -
> >
>
http://www.childrenshospital.org/clinicalservices/Site1964/mainpageS1964P0.html
> >
> > Another excellent resource is Dr. Wayne F. Yakes
> in
> > Englewood, CO.  He runs the Vascular Malformation
> > Center at Swedish Medical Center.  Dr. Yakes is an
> > interventional radiologist, so all of my
> treatments
> > have been non-surgical scelerotherapy.  His number
> is
> > 303-788-4280 and web site is
> > http://www.thecni.org/cni_member.php?memid=1062
> >
> > I would recommend calling one or both of these
> > facilities, telling them Trent's story, and asking
> > about a consultation before treating him again.
> It
> > should be well worth the trip to know he has
> received
> > a proper diagnosis and will get the right
> treatment.
> >
> > Finally, here are some websites to help you
> > differentiate between the various types of
> vascular
> > malformations and treatment options.
> >
> > http://www.novanews.org/
> >
> > http://www.birthmarks.us/
> >
> >
>
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Vascular%20Ma\
lformations%20of%20the%20Brain
> >
> > Very best of luck to you and little Trent.  These
> > things are confusing at first, but little by
> little,
> > you will find the information you need.
> >
> > Take care,
> >
> > Cheryl
> >
> >
> > --- moonbeamdarla <moonbeam611@...>
> wrote:
> >
> > > 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
>
=== message truncated ===




____________________________________________________
Start your day with Yahoo! - make it your home page
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Cheryl, thank you so much for your insights about all of this.  We are so
confused and just want some answers.  Our present plan is to see what the
Cincinnati clinic has to say and then get a second opinion, probably from
boston.  Thanks again.  It feels good to have a plan and to be heading in the
right direction.

Darla

---- neurovascular@yahoogroups.com wrote:
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Re: new to this group -- 2 year old son with vascular malformations
>            From: Cheryl Kotan <radiantgreen@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Sat, 20 Aug 2005 10:12:53 -0700 (PDT)
>    From: Cheryl Kotan <radiantgreen@...>
> Subject: Re: new to this group -- 2 year old son with vascular malformations
>
>
> Hi Darla, my name's Cheryl.  I saw your posting and
> thought I'd send you some information to look into.
> I'm going to give you my story first, then refer you
> to a couple of vascular malformation specialists I
> know of.  I am by no means an expert, but I do know
> that vascular malformations are rare and doctors
> familiar with proper treatment are hard to find.
>
> I was born with a venous malformation in my right
> neck, jaw, and tongue. It really became noticeable
> when I reached puberty (hormonal changes make them
> grow) and my parents took me to an ENT to get it
> checked out.  He diagnosed it as a cavernous
> hemangioma, and surgically removed it.  When I was a
> senior in high school, I felt as though it had come
> back, but the ENT doctor said "You have a cavernous
> hemangioma.  They don't grow back.  If you don't like
> how it looks, go see a plastic surgeon."  Well, I did,
> and the plastic surgeon diagnosed me (correctly) with
> a venous malformation.  He told me there were 2
> facilities that he knew of in the US that specialize
> in vascular malformations:  one in Denver, CO and one
> in Boston, MA.
>
> Given TrentÂ’s age, you could try the Vascular
> Anomalies Center (VAC) at Children's Hospital in
> Boston, MA.  They specialize in pediatric vascular
> malformations, including those in the brain.  I have
> not been there, but know people who have.  They speak
> very highly of them.  Here is their web site -
>
http://www.childrenshospital.org/clinicalservices/Site1964/mainpageS1964P0.html
>
> Another excellent resource is Dr. Wayne F. Yakes in
> Englewood, CO.  He runs the Vascular Malformation
> Center at Swedish Medical Center.  Dr. Yakes is an
> interventional radiologist, so all of my treatments
> have been non-surgical scelerotherapy.  His number is
> 303-788-4280 and web site is
> http://www.thecni.org/cni_member.php?memid=1062
>
> I would recommend calling one or both of these
> facilities, telling them Trent's story, and asking
> about a consultation before treating him again.  It
> should be well worth the trip to know he has received
> a proper diagnosis and will get the right treatment.
>
> Finally, here are some websites to help you
> differentiate between the various types of vascular
> malformations and treatment options.
>
> http://www.novanews.org/
>
> http://www.birthmarks.us/
>
>
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Vascular%20Ma\
lformations%20of%20the%20Brain
>
> Very best of luck to you and little Trent.  These
> things are confusing at first, but little by little,
> you will find the information you need.
>
> Take care,
>
> Cheryl
>
>
> --- moonbeamdarla <moonbeam611@...> wrote:
>
> > 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
> >
> >
> >
>
>
>
>
> ____________________________________________________
> Start your day with Yahoo! - make it your home page
> http://www.yahoo.com/r/hs
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
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>

Hi Darla, my name's Cheryl.  I saw your posting and
thought I'd send you some information to look into.
I'm going to give you my story first, then refer you
to a couple of vascular malformation specialists I
know of.  I am by no means an expert, but I do know
that vascular malformations are rare and doctors
familiar with proper treatment are hard to find.

I was born with a venous malformation in my right
neck, jaw, and tongue. It really became noticeable
when I reached puberty (hormonal changes make them
grow) and my parents took me to an ENT to get it
checked out.  He diagnosed it as a cavernous
hemangioma, and surgically removed it.  When I was a
senior in high school, I felt as though it had come
back, but the ENT doctor said "You have a cavernous
hemangioma.  They don't grow back.  If you don't like
how it looks, go see a plastic surgeon."  Well, I did,
and the plastic surgeon diagnosed me (correctly) with
a venous malformation.  He told me there were 2
facilities that he knew of in the US that specialize
in vascular malformations:  one in Denver, CO and one
in Boston, MA.

Given Trent’s age, you could try the Vascular
Anomalies Center (VAC) at Children's Hospital in
Boston, MA.  They specialize in pediatric vascular
malformations, including those in the brain.  I have
not been there, but know people who have.  They speak
very highly of them.  Here is their web site -
http://www.childrenshospital.org/clinicalservices/Site1964/mainpageS1964P0.html

Another excellent resource is Dr. Wayne F. Yakes in
Englewood, CO.  He runs the Vascular Malformation
Center at Swedish Medical Center.  Dr. Yakes is an
interventional radiologist, so all of my treatments
have been non-surgical scelerotherapy.  His number is
303-788-4280 and web site is
http://www.thecni.org/cni_member.php?memid=1062

I would recommend calling one or both of these
facilities, telling them Trent's story, and asking
about a consultation before treating him again.  It
should be well worth the trip to know he has received
a proper diagnosis and will get the right treatment.

Finally, here are some websites to help you
differentiate between the various types of vascular
malformations and treatment options.

http://www.novanews.org/

http://www.birthmarks.us/

http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Vascular%20Ma\
lformations%20of%20the%20Brain

Very best of luck to you and little Trent.  These
things are confusing at first, but little by little,
you will find the information you need.

Take care,

Cheryl


--- moonbeamdarla <moonbeam611@...> wrote:

> 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
>
>
>




____________________________________________________
Start your day with Yahoo! - make it your home page
http://www.yahoo.com/r/hs

oops!  just www.

--- moonbeam611@... wrote:

> Thank you so much for your thoughts, it would be
> nice to have answers but this seems extremely rare
> in pediatrics.  Hopefully I will learn something
> that our docs aren't considering from what the rest
> of the list members are going through.
>
> Thanks
> Darla
>
> ---- neurovascular@yahoogroups.com wrote:
> >
> > There are 3 messages in this issue.
> >
> > Topics in this digest:
> >
> >       1. new to this group -- 2 year old son with
> vascular malformations
> >            From: "moonbeamdarla"
> <moonbeam611@...>
> >       2. Re: new to this group -- 2 year old son
> with vascular malformations
> >            From: "Sandi" <sandi@...>
> >       3. Re: new to this group -- 2 year old son
> with vascular malform...
> >            From: kidro85@...
> >
> >
> >
>
________________________________________________________________________
> >
>
________________________________________________________________________
> >
> > Message: 1
> >    Date: Fri, 19 Aug 2005 01:28:26 -0000
> >    From: "moonbeamdarla"
> <moonbeam611@...>
> > Subject: new to this group -- 2 year old son with
> vascular malformations
> >
> > 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
> >
> >
> >
> >
> >
>
________________________________________________________________________
> >
>
________________________________________________________________________
> >
> > Message: 2
> >    Date: Thu, 18 Aug 2005 21:34:58 -0400
> >    From: "Sandi" <sandi@...>
> > Subject: Re: new to this group -- 2 year old son
> with vascular malformations
> >
> > Darla, I don't have children with this problem. I,
> myself, have a capillary
> > telangiectasis on the pons of my brain stem.
> >
> > I just wanted to tell you that my heart goes out
> to you and your son and I
> > pray for him and your family that all will go
> well.
> >
> > Sandi
> > ----- Original Message -----
> > From: "moonbeamdarla" <moonbeam611@...>
> > To: <neurovascular@yahoogroups.com>
> > Sent: Thursday, August 18, 2005 9:28 PM
> > Subject: [neurovascular] new to this group -- 2
> year old son with vascular
> > malformations
> >
> >
> > 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
>
=== message truncated ===




____________________________________________________
Start your day with Yahoo! - make it your home page
http://www.yahoo.com/r/hs

You might want to check out www..angiomaalliance.org.
It is a very active website.
Kaye

--- moonbeam611@... wrote:

> Thank you so much for your thoughts, it would be
> nice to have answers but this seems extremely rare
> in pediatrics.  Hopefully I will learn something
> that our docs aren't considering from what the rest
> of the list members are going through.
>
> Thanks
> Darla
>
> ---- neurovascular@yahoogroups.com wrote:
> >
> > There are 3 messages in this issue.
> >
> > Topics in this digest:
> >
> >       1. new to this group -- 2 year old son with
> vascular malformations
> >            From: "moonbeamdarla"
> <moonbeam611@...>
> >       2. Re: new to this group -- 2 year old son
> with vascular malformations
> >            From: "Sandi" <sandi@...>
> >       3. Re: new to this group -- 2 year old son
> with vascular malform...
> >            From: kidro85@...
> >
> >
> >
>
________________________________________________________________________
> >
>
________________________________________________________________________
> >
> > Message: 1
> >    Date: Fri, 19 Aug 2005 01:28:26 -0000
> >    From: "moonbeamdarla"
> <moonbeam611@...>
> > Subject: new to this group -- 2 year old son with
> vascular malformations
> >
> > 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
> >
> >
> >
> >
> >
>
________________________________________________________________________
> >
>
________________________________________________________________________
> >
> > Message: 2
> >    Date: Thu, 18 Aug 2005 21:34:58 -0400
> >    From: "Sandi" <sandi@...>
> > Subject: Re: new to this group -- 2 year old son
> with vascular malformations
> >
> > Darla, I don't have children with this problem. I,
> myself, have a capillary
> > telangiectasis on the pons of my brain stem.
> >
> > I just wanted to tell you that my heart goes out
> to you and your son and I
> > pray for him and your family that all will go
> well.
> >
> > Sandi
> > ----- Original Message -----
> > From: "moonbeamdarla" <moonbeam611@...>
> > To: <neurovascular@yahoogroups.com>
> > Sent: Thursday, August 18, 2005 9:28 PM
> > Subject: [neurovascular] new to this group -- 2
> year old son with vascular
> > malformations
> >
> >
> > 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
>
=== message truncated ===


__________________________________________________
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Thank you so much for your thoughts, it would be nice to have answers but this
seems extremely rare in pediatrics.  Hopefully I will learn something that our
docs aren't considering from what the rest of the list members are going
through.

Thanks
Darla

---- neurovascular@yahoogroups.com wrote:
>
> There are 3 messages in this issue.
>
> Topics in this digest:
>
>       1. new to this group -- 2 year old son with vascular malformations
>            From: "moonbeamdarla" <moonbeam611@...>
>       2. Re: new to this group -- 2 year old son with vascular malformations
>            From: "Sandi" <sandi@...>
>       3. Re: new to this group -- 2 year old son with vascular malform...
>            From: kidro85@...
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Fri, 19 Aug 2005 01:28:26 -0000
>    From: "moonbeamdarla" <moonbeam611@...>
> Subject: new to this group -- 2 year old son with vascular malformations
>
> 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
>
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
>    Date: Thu, 18 Aug 2005 21:34:58 -0400
>    From: "Sandi" <sandi@...>
> Subject: Re: new to this group -- 2 year old son with vascular malformations
>
> Darla, I don't have children with this problem. I, myself, have a capillary
> telangiectasis on the pons of my brain stem.
>
> I just wanted to tell you that my heart goes out to you and your son and I
> pray for him and your family that all will go well.
>
> Sandi
> ----- Original Message -----
> From: "moonbeamdarla" <moonbeam611@...>
> To: <neurovascular@yahoogroups.com>
> Sent: Thursday, August 18, 2005 9:28 PM
> Subject: [neurovascular] new to this group -- 2 year old son with vascular
> malformations
>
>
> 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
>
>
>
>
>
> Community email addresses:
>   Post message: neurovascular@onelist.com
>   Subscribe:    neurovascular-subscribe@onelist.com
>   Unsubscribe:  neurovascular-unsubscribe@onelist.com
>   List owner:   neurovascular-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/neurovascular
> Yahoo! Groups Links
>
>
>
>
>
>
>
>
>
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 3
>    Date: Fri, 19 Aug 2005 02:25:53 EDT
>    From: kidro85@...
> Subject: Re: new to this group -- 2 year old son with vascular malform...
>
>
> Darla,
>
> Your Son is in my thoughts & prayers.
>
> Tony
>
> In a message dated 8/18/2005 6:32:05 P.M. Pacific Daylight Time,
> moonbeam611@... writes:
>
> 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
>
>
>
>
>
>
>
> [This message contained attachments]
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
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>   Post message: neurovascular@onelist.com
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> ------------------------------------------------------------------------
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>
>
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>
> ------------------------------------------------------------------------
>
>
>

Darla, I don't have children with this problem. I, myself, have a capillary
telangiectasis on the pons of my brain stem.

I just wanted to tell you that my heart goes out to you and your son and I
pray for him and your family that all will go well.

Sandi
----- Original Message -----
From: "moonbeamdarla" <moonbeam611@...>
To: <neurovascular@yahoogroups.com>
Sent: Thursday, August 18, 2005 9:28 PM
Subject: [neurovascular] new to this group -- 2 year old son with vascular
malformations


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





Community email addresses:
   Post message: neurovascular@onelist.com
   Subscribe:    neurovascular-subscribe@onelist.com
   Unsubscribe:  neurovascular-unsubscribe@onelist.com
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Shortcut URL to this page:
   http://www.onelist.com/community/neurovascular
Yahoo! Groups Links

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