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
> > with Dr. Trese. He
> > saw me for 4 hours and is now creating what seams
> > like a PH.D. Theses
> > to send to Dr. Trese and then talk with him to see
> > what they think
> > should be done. Most probably a Vitrectomie to pull
> > all the
> > membranes that are stuck in my vitreous and replace
> > it with new
> > fluid. He did this for another Post 40 year old
> > FEVR patient and it
> > cleared up the entire retina. But I don't know what
> > they will want
> > to do until they converse.
> >
> > Long E-mail to get to my question. Where did you
> > stay while your
> > daughter was in the william Beaumont Hospital.
> > Obviously you had to
> > stay around for post operative care and watching.
> > How long did you
> > stay there. My mom has always been by my side for
> > every operation
> > from 2 years old until 21 years (~15 surgeries) but
> > she is 81 now and
> > still insists on being there by my side. She still
> > gets around fine
> > but she is 81 and I wanted to tell her she can't
> > keep following me
> > forever although she does know my history and is my
> > medical advisor
> > so I kind of want her there but I don't want her to
> > be at a dive and
> > If I need to stay around for post operative care do
> > you have a
> > recommendation for where to stay near the hospital.
> >
> > I have to say what I would want is a Vitrectomie in
> > both eyes but
> > emotionally I don't know how I can walk into another
> > hospital. I am
> > flipping out.
> >
> > I was working for the Navy and we were slowly
> > getting crunched by the
> > war taking personnel and money away from us. I flew
> > with a team to
> > Alaska to analyze analyze something broken on a sub
> > and worked 9 days
> > with very little sleep and also got a flu from the
> > sub crew from
> > where ever they came from. I think you can guess
> > from where. I
> > developed Fibromyalgia a devastating neurological
> > and immune system
> > disease which has now cure. I was up for days at a
> > time and also
> > under enormous pressure physically and emotionally.
> > I was cold,
> > cramped and tired. Just couldn't keep up with the
> > Navy Seals on the
> > OP.
> >
> > I have had to request Disability Retirement at the
> > peek of my career
> > but said what the hell life has never stayed stable
> > for me. I am
> > sell my house and was planning to move and rent a
> > small condo on the
> > beach. It is a lot less expensive to live but now I
> > can't believe my
> > eyes are doing this to me after almost 20 years of
> > nothing. what the
> > Hell.
> > I have been moving from doctor to doctor so fast
> > that I haven't even
> > been able to tell anyone in my family except my mom
> > who has come with
> > me to the doctors so she know about everything.
> >
> > Anyone know the area around the hospital???
> >
> > Help Jane Ann
> >
> >
> > --- In FEVRnet@yahoogroups.com, "whassett"
> > <whassett@> wrote:
> > >
> > > Anyone who has knowledge of any current
> > studies or reading
> > > concerning FEVR, please pass along any information
> > you might have.
> > > Thank you very much.
> > >
> > > Bill Hassett
> > >
> >
> >
> >
>