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
>
>
>




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