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 ===




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