He just turned 18, but was 15 when he had the echocardiogram. No, he
hasn't had another one.
--- In marfans_support_and_chat@yahoogroups.com, "gdmdny"
<gdmdny@...> wrote:
>
> Scott-
> Those numbers represent the size of your son's aortic root and
> ascending aorta. How old is your son? Those numbers alone are not
> alarming. Has he had other echocardiograms?
>
> --- In marfans_support_and_chat@yahoogroups.com, "scotty36360"
> <scotty36360@> wrote:
> >
> > Please excuse how long this is!
> > At the end of 2005 I had my son visit several doctors to investigate
> > the possibility of Marfan. The last one he saw was a pediatric
> > cardiologist, who performed an echo cardiogram. He was very snotty
> > with me. Before the exam even started he said an orthopedist was
> not
> > qualified to diagnose Marfan. When he did the exam, he said my son
> > Lucas' aorta was "high normal, and I stress the word normal". I
> tried
> > to get the test results myself, so I could research them, but we had
> > the tests run in a couple of other cities we don't live in. When I
> > tried to get them my son wasn't with me to sign the consent form, so
> > they wouldn't give them to me. I gave up and figured that just
> > because the cardiologist had a god complex, that didn't mean he
> would
> > put my sons' life in danger. I knew there was some kind of
> connective
> > tissue disorder, but decided it wasn't serious.
> > About a year ago Lucas dislocated his shoulder but didn't tell me
> > because he did it while goofing off on his motorcycle and didn't
> want
> > me to take it away. Since then it has been dislocating with greater
> > frequency. A couple of months ago it wouldn't go back in place and
> > the school had to take him to the hospital. It was out of socket 1
> 1/2
> > hours. Days later I took him to another orthopedist that resented me
> > telling him my suspicions, although he does know Lucas is
> hypermobile.
> > He pulled both of Lucas' shoulders out of socket very easily, among
> > other things. He wants to operate on the shoulder and break the
> bones
> > and put them back together with screws in a better shape. He also
> > wants to cut the connective tissue and sew the shortened ligaments
> > back on.
> > I want to get a second opinion, but don't know where to find a
> doctor
> > that knows about Marfan.
> > By the way, the medical record we finally got today say things like
> this:
> > Back has an increased dorsal kyphosis and increased lumbar
> lordosis.
> > He has extremely long digits and feet
> > I couldn't get a copy of the cardiologists' report because it was in
> > the records of a nearby doctor and was a "consult" so I have to go
> > about 4 hour drive away to get a copy. I was able to look at it and
> > take notes. I don't know what these mean, I just copied them as
> > quickly as I could:
> > annulus 22mm, sinus 29mm, junction 23mm, IVS 7, LVEDD 4.8, LVPW 7
> > Does anyone have any ideas for me, or know what those numbers mean?
> > Do you have any advice about where to find a doctor that will
> LISTEN,
> > or if I am being silly about my reservations concerning his surgery?
> >
>