Hi Jane,

Dr. Trese's office is in a building that has an
attached parking garage and the hospital (we have
always entered on the North end) has valet parking,
hence, both are very short distances. Good luck on
your visit.

Thank you so much for the articles and let us
know how you are doing.


Bill



--- Jane Young MS <young1@...> wrote:

> Hi All,
>
> My doctor talked for a long time with Dr. Trese and
> I will be making
> an appt. tomorrow to see him for a short visit. (I
> guess short) I
> can't imagine why it wouldn't be 1 day now. I am
> not in critical
> condition yet so I don't think I will be having
> anything done in this
> trip.
>
> I went searching on the net and decided to go all
> out since this will
> be a short first trip and I really, Really, REALLY,
> need something to
> look forward to, and will be splitting the cost with
> my Mom (she
> insists) Very stubborn these Moms (joke, just
> kidding) She is
> great. Never left my side once since 3 months old
> when she/we found
> out something was wrong. There wasn't a name for it
> then and they
> didn't think they needed to put infants and young
> children asleep.
> Of course they won't remember (bull S-t). I
> remember. Thank god
> they are coming around now since there has been a
> lot of infant
> research done. OK I am rambling...
>
> I am going to be staying at the Radisson Hotel
> Bloomfield Hills It
> is 5 miles from the hospital, has an indoor heated
> pool and whirlpool
> and workout room. If I am sick from my exam like I
> was last time from
> my Fibromyalgia there is room service till 10PM and
> a fridge. and
> microwave and bottled water and coffee in the room.
>
> Thanks both of you for the info about the other
> hotels. What do you
> think about the thickness of the walls between you
> and the next
> room? I think we will go with taxi's this time so
> we can see if that
> will work. I would rather my Mom be dropped off at
> the door. How was
> the walk from the car parking lot to the entrance.
> I pulled it up on
> the web and it looked long. Actually the entire
> hospital looked
> massive. I don't want it to be a mile walk from a
> car to a hospital
> room.
>
> Which end is the eye patients kept in??? Which end
> do you enter
> into???
>
> Jane Ann
> --- In FEVRnet@yahoogroups.com, William Hassett
> <whassett@...> wrote:
> >
> > Dear Jane,
> >
> > I cannot tell you how sorry I am to hear what
> you
> > are going through. Ironically, during a visit
> with
> > Dr. Trese last month, I showed him a sentence in a
> > study that said, "Progression of fundus changes
> and
> > threat to vision is rare after age 20 years". I
> was
> > merely hoping that at some point in Isabella's
> life
> > she would be safe and I could sleep again (she is
> > seven now and completely without vision in one
> eye).
> > Unfortunately, Dr, Trese warned me that generally
> that
> > is true but, as you now know, one is not
> completely
> > certain of stability at any point in their life
> with
> > FEVR.
> >
> > We usually stay at an Embassy Suite in Troy
> which
> > is about a 10-15 minute drive from Beaumont. We
> stay
> > there because it has two distinct rooms which may
> > serve your purposes as well. If that drive is
> more
> > than you or your mother are comfortable with,
> please
> > give me 24 hours and I will get the name/s of
> places a
> > little closer. Much depends on how long you
> expect to
> > be there and how much you want to spend.
> >
> > I have followed Dr. Trese's use of Lucentis
> and
> > he reported to me that the results have been
> excellent
> > but I have no idea if the use would be appropriate
> in
> > your case.
> >
> > I would much appreciate it if you would
> e-mail
> > the studies to me as I, like everyone around this
> > disease, feel helpless.
> >
> > I cannot imagine what your life must be like
> > right now but I hope you can get the help you need
> to
> > halt the current situation with your eyes.
> >
> > I will be back to you shortly on the hotels.
> >
> >
> > Bill
> >
> >
> > --- Jane Young MS <young1@...> wrote:
> >
> > > Bill,
> > >
> > > Hi, Jane (composer of FEVER.net) here,
> > >
> > > I visited NIH 2 weeks ago and got some more FEVR
> > > Genetic papers for
> > > you if you want. I can not post them in the
> files
> > > yet until I get
> > > permission from the publishers but I can E-mail
> them
> > > to you them to
> > > you if you want. Just E-mail me at young1@...
> > >
> > > How is your daughter doing. I posted your
> message
> > > about Dr. Trese on
> > > his link for more information under "Find FEVR
> > > Docotrs). I got his
> > > Office phone numbers and addresses from NIH.
> > >
> > > ufortunately I have gone down hill both
> physically
> > > and in the past
> > > few weeks have been going from doctor to doctor
> and
> > > then back to my
> > > doctor at the Retina Group of Washington (Dr.
> > > Gilbert).
> > >
> > > I am now 40 years old, and a few weeks ago,
> started
> > > seeing shooting
> > > stars (little lights moving across my vision)
> It
> > > looks like my FEVR
> > > has continued to progress. I had extensive
> surgery
> > > to stop the blood
> > > vessels near the edge of my vision/retina from
> > > growing and also got
> > > rid of the membranes that was pulling my retina
> off
> > > but the
> > > detachment and traction eventually ripped my
> macular
> > > region. We had
> > > to laser the rip to stop the fluid from
> detaching my
> > > retina. This
> > > left me legally blind 20/200 in best eye.
> > >
> > > It seems with the new technology of ocular (eye)
> > > scanning we can see
> > > the retina and also the thin membranes which
> have
> > > very slowly grown
> > > into the vitreous gel. The gel normally leaves
> the
> > > retina and thus
> > > it is pulling on the retina. This has caused
> > > bleeding and exudation
> > > between my macular and and my region near my
> nose
> > > (nasal region).
> > >
> > > NIH was great for getting a 2004 and 2007
> picture
> > > for comparison.
> > > Dr. Gilbert has been the best. He works closely
>
=== message truncated ===