I would like to know if anyone over the age of 20 years has had VRT
surgery and would like to know how happy/unhappy they are with the
results.  Thank you - Joyce

I'm getting an MRR soon Annie but I was upset to find out my Doctor
won't be using the sutures procedure you mentioned. I was hoping to
have a repeat of your luck lol

--- In duanes@yahoogroups.com, "Annie Fitzgerald"
<annmariefitzgerald@...> wrote:
>
> I only had the one surgery, MRR, on my good eye and on the Duane's
eye.  I
> only saw 1-2 doctors when I was 10, who misdiagnosed it as sixth nerve
> palsy.  The only other eye Dr. I saw was Dr. Shepherd when I was 21
years
> old.   He ended up doing the surgery.  He insisted on consulting
with Gill
> Roper-Hall, DBOT (not sure what that stands for- she's not a
"doctor" but
> some leading eye specialist, from what I'm told/have googled).  From
what I
> hear, my results seem to be atypical for MRR. It's strange though,
because
> both Dr. Shepherd and Ms. Roper-Hall both predicted that the results
would
> be such, and didn't offer another option as far as surgery goes.
They both
> predicted it correctly, as it turns out.  I don't really know why I
seem to
> be the only one with these results with MRR.
>
> -Annie
>
> On Mon, Jun 9, 2008 at 7:24 PM, Tiffany <tjc71nj@...> wrote:
>
> >   Hi Annie,
> > I'm still kind of amazed with the results of your surgery. I was just
> > wondering if you had
> > any prior surgeries. I remember you had mentioned seeing quite a few
> > doctors. Did you
> > have surgery more than once?
> > Tiffany
> >
> > --- In duanes@yahoogroups.com <duanes%40yahoogroups.com>, "Annie
> > Fitzgerald" <annmariefitzgerald@> wrote:
> > >
> > > "I think I had the same type of surgery that you had; MRR but no
> > > improvement. How much of an improvement do you think it made?"
> > >
> > > I had a great improvement after MRR. I can now turn my left
(Duane's) eye
> > > to the left, and I have better control over my eyes (they
wouldnt' drift
> > as
> > > much) which wouldn't happen before the surgery. However,
everyone else
> > says
> > > that MRR can't fix lateral movement, so I don't know how it work
wtih me.
> > > It has fixed my head turn. I have noticed a slight regression
(my right
> > > eye is starting to drift a little inward sometimes). Also, I have
> > recently
> > > notice that when I look in the mirror from far away, my right
eye and
> > left
> > > eye both seem a bit unaligned...they both seem to be a bit inward,
> > recently.
> > >
> > > "What type of Duane's do you have (maybe that has something to
do with
> > it)?"
> > >
> > > Type 1 Left eye
> > >
> > > "Would you mind telling me where you had the surgery and what doctor
> > > performed it?"
> > > I was living in St. Louis, and had the surgery at Barnes-Jewish
Hospital
> > > with Dr. James Shepherd III, with Gill Roper-Hall as a consult.
I didn't
> > > know about this group until after I had the surgery, and had
never heard
> > of
> > > the famous Dr. Rosenbaum. I was very pleased with my results. I have
> > > noticed a regression, however slight, and I can see what my
doctor meant
> > > when he said " You might need to have it again in 10 years. Guess I
> > better
> > > start saving up now.
> > >
> > > Hope this helps.
> > >
> > > Annie
> > >
> > >
> > > Thanks for sharing.
> > > Tiffany
> > >
> > > On Sun, May 25, 2008 at 4:46 PM, Tiffany <tjc71nj@> wrote:
> > >
> > > > I think I had the
> > > > same type of surgery that you had; MRR but no improvement. How
much of
> > an
> > > > improvement do you think it made? What type of Duane's do you have
> > (maybe
> > > > that has
> > > > something to do with it? Would you mind telling me where you
had the
> > > > surgery and what
> > > > doctor performed it?
> > > >
> > > > Thanks for sharing.
> > > > Tiffany
> > > >
> > > > --- In duanes@yahoogroups.com <duanes%40yahoogroups.com> <duanes%
> > 40yahoogroups.com>, "Annie
> > > > Fitzgerald" <annmariefitzgerald@> wrote:
> > > > >
> > > > > Tiffany,
> > > > >
> > > > > I had MRR surgery 3 years ago, and I noticed the same thing- the
> > inside
> > > > > corner of my right eye (my good eye) is grey. I honestly
think that
> > we
> > > > are
> > > > > the only ones who notice it since we look closely in the
mirror at
> > our
> > > > eyes
> > > > > and notice things about ourselves than others due. When I go to
> > different
> > > > > eye doctors (I travel and move alot), I always ask them, and
none of
> > them
> > > > > say that's it's abnormal, and brush it off. The most recent eye
> > doctor I
> > > > > went to said the same thing- that it's normal, even for
people who
> > > > haven't
> > > > > had Duane's or eye surgery, to have slight discoloration.
> > > > >
> > > > > I'm sorry that your surgery did not make any improvements.
Are you
> > going
> > > > to
> > > > > have surgery again?
> > > > >
> > > > > -Annie Fitzgerald
> > > > >
> > > > > On Sun, May 25, 2008 at 3:41 PM, Tiffany <tjc71nj@> wrote:
> > > > >
> > > > > > Hi Candice,
> > > > > > I'm new to the group as well. I am 36 and had surgery once
in my
> > early
> > > > > > 20's. The surgery
> > > > > > didn't make any improvement whatsoever. I was wondering if you
> > would
> > > > mind
> > > > > > sharing
> > > > > > what type of surgeries your son had that made such an
improvement
> > and
> > > > what
> > > > > > doctor
> > > > > > performed them.
> > > > > > Also, after my surgery, I noticed that the inside corner
of my eye
> > was
> > > > a
> > > > > > very light shade of
> > > > > > grey barely noticeable. I thought it would go away once my eye
> > healed
> > > > from
> > > > > > the surgery,
> > > > > > but it never did. Has anyone else had something similar appear
> > after
> > > > > > surgery?
> > > > > > Thanks,
> > > > > > Tiffany
> > > > > >
> > > > > > --- In duanes@yahoogroups.com <duanes%40yahoogroups.com>
<duanes%
> > 40yahoogroups.com> <duanes%
> > > > 40yahoogroups.com>, Candice Forbes
> > > >
> > > > > > <candiforbes@> wrote:
> > > > > > >
> > > > > > > Welcome to the group. First off, Duanes is congenital
and happens
> > > > > > > very early in pregnancy. The nerve to the effected
muscle does
> > not
> > > > > > > work properly. No one knows what causes Duane's, so
please do not
> > > > > > > try to blame yourself. If you are still breast feeding, you
> > already
> > > > > > > are a great mother.
> > > > > > >
> > > > > > > Secondly, many doctors are unfamiliar with Duane's. It
is a rare
> > > > > > > from of strabismus. As for taking her to the doctor
sooner, if
> > you
> > > > > > > were not noticing it too much before, then it obviously
it not
> > that
> > > > > > > bad a case. However, I would look back at pictures. There is
> > > > > > > something called Sixth nerve palsy that looks the same as
> > Duane's,
> > > > > > > but it is not from birth. Now that you know what you are
looking
> > > > > > > for, you might be able to see it in some previous
pictures. If
> > not,
> > > > > > > you might ask a few more questions of the opthamologist.
> > > > > > >
> > > > > > > Duane's in the scheme of things is not the worse issue
to have.
> > > > > > > There are severity levels, but if you are just now
noticing it,
> > it is
> > > > > > > likely not to be too severe. Many people have Duane's
and never
> > need
> > > > > > > any intervention at all. And they drive cars, play
sports (even
> > > > > > > baseball), become professionals, and live successful
lives. So
> > now
> > > > > > > you should at least take a breath.
> > > > > > >
> > > > > > > As for what to do from here, I am attaching some
information that
> > > > > > > includes questions for the doctor and surgery options. Just
> > realize
> > > > > > > that if your daughter can look straight ahead and her
head is
> > aligned
> > > > > > > straight ahead, surgery will not be needed. Surgery is
used when
> > a
> > > > > > > faceturn occurs (child moves their face to one side to
align the
> > eyes
> > > > > > > to look straight). In my sons case, he turned his head
30 degrees
> > to
> > > > > > > look straight ahead. After two surgeries(2 years ago, he
is now
> > 5),
> > > > > > > no one notices he has an issue at all. For most children
> > monitoring
> > > > > > > is enough since they have no faceturn, they just adapt
by turning
> > > > > > > their head rather than their eyes in that direction. As
far as
> > > > > > > glasses to correct, they are only needed to correct a
faceturn
> > and
> > > > > > > are used in some cases just as surgery is used in some
cases.
> > > > > > >
> > > > > > > Hope all of this helps, but please understand that many
of us
> > have
> > > > > > > gone through the same panic and the same lack of
information from
> > > > > > > doctors ourselves. Someone is always willing to share their
> > > > > > > experience because we have all been there, so please ask
more
> > > > > > > questions. Hope you are feeling a little less panicky. Candi
> > > > > > >
> > > > > > >
> > > > > > > __________________________________________________________
> > > > > > > _____
> > > > > > > Questions for your Doctor:
> > > > > > > 1) Are the eyes aligned in the straight-ahead position
> > > > > > > 2) Is there a head turn or head tilt
> > > > > > > 3) Is there any evidence of it being bilateral
> > > > > > > 4) Is there fusion and depth perception. If there is
fusion, how
> > > > much?
> > > > > > > 5) Is surgery an option
> > > > > > > 6) If surgery is an option, does the PO have experience
with both
> > MRR
> > > > > > > (medial rectus recession) and VRT (Vertical Rectus
> > Transposition).
> > > > > > > Most POs have a lot of experience with MRR, very few have
> > experience
> > > > > > > with VRT (and they may not call it that, even if they do
have the
> > > > > > > experience). MRR can align the eyes. VRT can align the
eyes and
> > > > > > > usually gives some lateral movement to Duane's patients
with Type
> > I.
> > > > > > >
> > > > > > > Below is from a post I found on the 2 surgeries:
> > > > > > >
> > > > > > > THE MRR:
> > > > > > >
> > > > > > > The MRR surgery is the more basic of the two and is used
only to
> > > > > > > provide better central alignment. For most patients, this
> > procedure
> > > > > > > simply reduces any head turn. The MRR is not recommended
for (and
> > > > > > > will not help) patients who already have good central
alignment.
> > > > > > > How duanes affects central alignment: In addition to
preventing
> > the
> > > > > > > eye from moving in the affected direction, the lack of
resistance
> > > > > > > from the immobile muscle can lead the opposing (working) eye
> > muscle
> > > > > > > to become very tight in some duanes patients. The
working muscle
> > then
> > > > > > > pulls the eye off center and prevents the eye from
resting at
> > > > > > > midline. The MRR corrects this side effect of duanes by
> > repositioning
> > > > > > > the tightened working muscle, unattaching it from the
eye, and
> > > > > > > reconnecting it farther back on the eye. This procedure
allows
> > the
> > > > > > > eye to rest at midline (allows for better central
> > > > > > > alignment). In older children (and adults) adjustable
sutures are
> > > > > > > often used during the MRR so that alignment can be further
> > adjusted
> > > > > > > as necessary several hours post-op.
> > > > > > >
> > > > > > > THE VRT: (often gives outward movement) - child must
have some
> > head
> > > > > > > turn for this surgery
> > > > > > >
> > > > > > > The VRT surgery is more complex. The basic idea behind
the VRT is
> > to
> > > > > > > reposition the vertical eye muscles to provide some
resistance
> > > > > > > against the working lateral muscle. The result is a
"tripod" of
> > > > > > > muscles that move the eye. In addition to discouraging the
> > working
> > > > > > > lateral muscle from further tightening, the repositioned
vertical
> > > > > > > muscles sometimes provide the necessary torque for a little
> > movement
> > > > > > > past midline in the affected direction. From what I
understand,
> > it is
> > > > > > > impossible to tell prior to the
> > > > > > > surgery whether or not any additional movement will be
gained
> > past
> > > > > > > midline and this result is considered a "bonus" that may
or may
> > not
> > > > > > > be achieved. Because the VRT surgery is more complex, many
> > doctors do
> > > > > > > not perform it. Dr. Rosenbaum at UCLA is considered the
master of
> > > > > > > this surgery and most people on this board who have had
the VRT
> > went
> > > > > > > to him. Sometimes the VRT is followed several months
later by an
> > MRR
> > > > > > > to achieve full results.
> > > > > > >
> > > > > > > Side effects of both surgeries are minimal. Both are
outpatient
> > and
> > > > > > > the recovery time is relatively short, especially for small
> > children.
> > > > > > > The MRR is completely reversible and the results can be
adjusted
> > with
> > > > > > > additional surgeries as necessary. The VRT, because it
> > manipulates
> > > > > > > the vertical muscles, may be a little riskier. There is
a chance
> > that
> > > > > > > a vertical deviation will develop from the surgery
(voluntary eye
> > > > > > > movement up or down may be affected). This additional
risk may be
> > one
> > > > > > > reason fewer doctors
> > > > > > > perform the VRT, but with a skilled surgeon, these risks are
> > > > > > > minimized and they too can be addressed with further
outpatient
> > > > > > > surgery as necessary. Most parents on this board feel
that the
> > > > > > > possibility of some additional movement past midline in the
> > affected
> > > > > > > direction is worth the risk, and many of them have
chosen that
> > route
> > > > > > > with good results for their children.Both surgeries are
often
> > covered
> > > > > > > by insurance.
> > > > > > >
> > > > > > > GOOD LUCK! Here is his Dr Rosenbaums email. You could
send him
> > > > > > > pictures or even ask for a refferal in your area.
> > > > > > >
> > > > > > > rosenbaumpatients@
> > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > >
> > > > > > > On May 23, 2008, at 12:10 PM, kykimhill wrote:
> > > > > > >
> > > > > > > > I wanted to add one more question.
> > > > > > > > Why didn't I notice this before? I mean I've nursed
her all
> > along
> > > > and
> > > > > > > > didn't notice it until recently. Can she develop this
syndrome
> > > > > > > > suddenly? I'm just thinking if I found this out
sooner, maybe
> > > > > > > > something could have been done already.
> > > > > > > > She was born full term, not underweight, healthy, no
family
> > history
> > > > of
> > > > > > > > this condition.
> > > > > > > > Can you tell I'm nervous about this whole thing?? :I
> > > > > > > > whew...
> > > > > > > >
> > > > > > > > --- In duanes@yahoogroups.com
<duanes%40yahoogroups.com><duanes%
> > 40yahoogroups.com> <duanes
> > %
> > > > 40yahoogroups.com>, "kykimhill"
> > > >
> > > > > > <kykimhill@> wrote:
> > > > > > > > >
> > > > > > > > > Hello,
> > > > > > > > > I am a new member. I've noticed past a few months
that my
> > > > daughter's
> > > > > > > > > right eye would cross when she looks at me while
nursing on
> > my
> > > > left
> > > > > > > > > side. I thought she had problem with her right eye but
> > yesterday
> > > > > > > > > after a visit to a eye doctor, he told me my
daughter has
> > Duane
> > > > > > > > > Syndrome. He didn't explain what type or what can be
done or
> > > > > > > > anything
> > > > > > > > > and rushed me out the door. He just wants to follow
up on her
> > in
> > > > 6
> > > > > > > > > months.
> > > > > > > > > He said it is her left eye that is not moving
outward. When
> > she
> > > > > > > > looks
> > > > > > > > > straight, her eyes are straight.
> > > > > > > > > Now my questions is what type of Duane is this? (It
looks
> > like
> > > > the
> > > > > > > > > right inset picture of the boy in this groups front
> > homepage).
> > > > > > > > >
> > > > > > > > > Is there anything can be done to fix this condition?
Other
> > than
> > > > > > > > > surgery (if there is any surgery can be done), can
she wear
> > > > certain
> > > > > > > > > glasses to improve her eye muscle? What kind of food
can I
> > feed
> > > > her
> > > > > > > > > to strengthen/develop eye muscle?
> > > > > > > > > Is she going to have normal vision or would it be double
> > vision?
> > > > > > > > > Sometimes when she turns her head to look different
> > direction,
> > > > her
> > > > > > > > > right eyes crosses, is this normal for Duane S?
> > > > > > > > > When I was researching I thought she had Strabismus
but I
> > don't
> > > > know
> > > > > > > > > now. Will she able to drive ok when she get old?
> > > > > > > > > What can I do? Is there anything can be done? I
don't want
> > her to
> > > > > > > > > have a bad eye sight or get this worse.
> > > > > > > > > Thank you for reading my long post and any
> > encouragement/advice.
> > > > > > > > > Kim
> > > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > > >
> > > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > >
> > > > >
> > > > >
> > > > > -
> > > > >
> > > >
> > > >
> > > >
> > >
> >
> >
> >
>
>
>
> --
>

Any updates on the results of your procedure??

I did happen to notice Nicolette's pictures. She is one of quite a few that made
me realize
the results that surgery could produce. Quite a difference between the before
and after. It
will make alll the difference in the world for Nicolette. I realize each person
or parent
needs to consider the risks and make a decision for themselves, though.
Tiffany

--- In duanes@yahoogroups.com, "jma1721" <jma1721@...> wrote:
>
> --- In duanes@yahoogroups.com, "jma1721" <jma1721@> wrote:
> >Hi, I must be going senile I had forgotten that I had already
> replied to you, just posted again today lol.
>
> > --- In duanes@yahoogroups.com, "coreywoolhouse" <coreywoolhouse@>
> > wrote:
> > >I believe the faceturn developed later.  His alignment was off as
> a
> > baby, but improved so that we did not notice anything wrong for a
> few
> > years.  Around the age of 20 he started complaining about his
> vision
> > blurry and ghosting and we did notice the alignment was not good
> even
> > in straight on position.  It is so much better now.  Has anyone
> > explained to you that Duanes is to do with the 6th nerve and that
> it
> > is missing.  I would advise you to check this site for good
> pediatric
> > opthalmologists in your area.  I wish you the very best of luck.
> >
> > > How was your son's alignment before and after surgery? Did he
> always
> > > have a face turn or did it develop in his late teens/early
> twenties?
> > >
> > > I'd be pretty chuffed if I got my alignment straight. When it was
> > > straight, I never really noticed that when I'd look to the left,
> my
> > > right eye wouldn't follow. lol I was oblivious
> > >
> > > --- In duanes@yahoogroups.com, "jma1721" <jma1721@> wrote:
> > > >
> > > > --- In duanes@yahoogroups.com, elenie2666@ wrote:
> > > > >I second what the last person just wrote to you.  We had so
> many
> > > > different opinions regarding our son.  He eventually had mmr
> > surgery
> > > > at age 21.  Cosmetically it is better, but he does not have an
> > > > increase in movement, which we expected.  He considers from
> time
> > to
> > > > time the option of VRT to gain further movement.  Dont give up,
> > we
> > > > had 3 opinions (pediatric opthamologists).  Our son is now
> seeing
> > a
> > > > neurologist to try glasses with prisms as his focusing skills
> are
> > not
> > > > good.
> > > >
> > > >
> > > >  > It is the lack of the nerve to direct the muscles that is
> not
> > > > present. Keep asking and getting referred or find someone who
> > > > specializes in Duane's...Just 5 years ago we were told there
> was
> > > > nothing to do for our daughter. They were, however, wrong. VRT
> &
> > MRR
> > > > are both options with VRT offering the possible perk of lateral
> > > > movement. You can see picture's before & after in the photo
> > section
> > > > titled "Nicolette before & after VRT". Best of luck and don't
> > give up
> > > > until a specialist like Dr Rosenbaum gives you your options!Â
> > > > >
> > > > >
> > > > > -----Original Message-----
> > > > > From: CBD <cubbigdog@>
> > > > > To: duanes@yahoogroups.com
> > > > > Sent: Mon, 5 May 2008 5:36 pm
> > > > > Subject: Re: [duane's] My Introduction
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > Hi there. I have Type I. 25 years ago when I remember going
> to
> > the
> > > > >
> > > > > Virginia Eye Institute and the Childrens Hospital in VA, I
> > think I
> > > > was
> > > > >
> > > > > told I didn't even have the eye muscles on the one side of my
> > left
> > > > eye.
> > > > >
> > > > > I also have that droopy slightly sunken look on that same
> eye,
> > so I
> > > > also
> > > > >
> > > > > believed it. I keep asking my regular eye doctor and I have a
> > > > >
> > > > > neurologist who happens to specialize in neural-eye
> conditions,
> > and
> > > > both
> > > > >
> > > > > tell me there really isn't any surgery for me to fix it.
> > > > >
> > > > >
> > > > >
> > > > > Cliffton
> > > > >
> > > > >
> > > > >
> > > > > elenie2666@ wrote:
> > > > >
> > > > > > Hi Clifton,
> > > > >
> > > > > >
> > > > >
> > > > > > What type of Duane's do you have? As you will read thru
> these
> > > > post's
> > > > >
> > > > > > you may find that surgery is now an option for you. VRT &
> MRR
> > are
> > > > the
> > > > >
> > > > > > 2 that offer results. Welcome and hope you find a lot of
> > useful
> > > > >
> > > > > > information:)
> > > > >
> > > > > >
> > > > >
> > > > > > Below is some info I saved when researching for my
> daughter's
> > > > condition.
> > > > >
> > > > > > -------------------------
> > > > >
> > > > > >
> > > > >
> > > > > >
> > > > >
> > > > > > My daughter was diagnosed with Duanes at 8 months with Type
> I
> > > > (can't
> > > > >
> > > > > > move eye outward)...thankfully I found this site and Dr
> > > > Rosenbaums
> > > > >
> > > > > > name..Dr Rosenbaum is one of, if not the leader in the
> > treatment
> > > > of
> > > > >
> > > > > > Duanes. He is at The Jules Stein Eye Institute in Los
> Angeles
> > at
> > > > >
> > > > > > UCLA...it is a research hospital. Nicolette had VRT
> surgery
> > at
> > > > >
> > > > > > 2yrs.old with a follow up MRR 6 month's later... Her
> results
> > were
> > > > >
> > > > > > excellent, I have posted picture's in the group photo's
> > titled
> > > > >
> > > > > > "Nicolette Before & After VRT". Below is info I saved
> > compiled
> > > > from
> > > > >
> > > > > > various post's on the treatment option's...best of luck!
> > > > >
> > > > > >
> > > > >
> > > > > >
> > > > >
> > > > > > --------------------------------
> > > > >
> > > > > > Below is a list of questions I found in a post from someone
> > on
> > > > the
> > > > >
> > > > > > yahoogroups....it seemed to cover everything and if a PO
> > seems
> > > > unclear
> > > > >
> > > > > > on VRT than you definitely need to look for other
> options....
> > > > >
> > > > > >
> > > > >
> > > > > > 1) Are the eyes aligned in the straight-ahead position
> > > > >
> > > > > > 2) Is there a head turn or head tilt
> > > > >
> > > > > > 3) Is there any evidence of it being bilateral
> > > > >
> > > > > > 4) Is there fusion and depth perception.  If there is
> fusion,
> > how
> > > > much?
> > > > >
> > > > > > 5) Is surgery an option
> > > > >
> > > > > > 6) If surgery is an option, does the PO have experience
> with
> > both
> > > > MRR
> > > > >
> > > > > > (medial rectus recession) and VRT (Vertical Rectus
> > > > Transposition).
> > > > >
> > > > > > Most POs have a lot of experience with MRR, very few have
> > > > experience
> > > > >
> > > > > > with VRT (and they may not call it that, even if they do
> have
> > the
> > > > >
> > > > > > experience).  MRR can align the eyes.  VRT can align the
> eyes
> > and
> > > > >
> > > > > > usually gives some lateral movement to Duane's patients
> with
> > Type
> > > > I.
> > > > >
> > > > > >
> > > > >
> > > > > > *Here is a post I found on the 2 surgeries:*
> > > > >
> > > > > >
> > > > >
> > > > > > THE MRR:
> > > > >
> > > > > >
> > > > >
> > > > > > The MRR surgery is the more basic of the two and is used
> only
> > to
> > > > >
> > > > > > provide better central alignment. For most patients, this
> > > > procedure
> > > > >
> > > > > > simply reduces any head turn. The MRR is not recommended
> for
> > (and
> > > > will
> > > > >
> > > > > > not help) patients who already have good central alignment.
> > > > >
> > > > > > How duanes affects central alignment: In addition to
> > preventing
> > > > the
> > > > >
> > > > > > eye from moving in the affected direction, the lack of
> > resistance
> > > > from
> > > > >
> > > > > > the immobile muscle can lead the opposing (working) eye
> > muscle to
> > > > >
> > > > > > become very tight in some duanes patients. The working
> muscle
> > > > then
> > > > >
> > > > > > pulls the eye off center and prevents the eye from resting
> at
> > > > midline.
> > > > >
> > > > > > The MRR corrects this side effect of duanes by
> repositioning
> > the
> > > > >
> > > > > > tightened working muscle, unattaching it from the eye, and
> > > > >
> > > > > > reconnecting it farther back on the eye. This procedure
> > allows
> > > > the eye
> > > > >
> > > > > > to rest at midline (allows for better central
> > > > >
> > > > > > alignment). In older children (and adults) adjustable
> sutures
> > are
> > > > >
> > > > > > often used during the MRR so that alignment can be further
> > > > adjusted as
> > > > >
> > > > > > necessary several hours post-op.
> > > > >
> > > > > >
> > > > >
> > > > > > THE VRT: (often gives outward movement)
> > > > >
> > > > > >
> > > > >
> > > > > > The VRT surgery is more complex. The basic idea behind the
> > VRT is
> > > > to
> > > > >
> > > > > > reposition the vertical eye muscles to provide some
> > resistance
> > > > against
> > > > >
> > > > > > the working lateral muscle. The result is a "tripod" of
> > muscles
> > > > that
> > > > >
> > > > > > move the eye. In addition to discouraging the working
> lateral
> > > > muscle
> > > > >
> > > > > > from further tightening, the repositioned vertical muscles
> > > > sometimes
> > > > >
> > > > > > provide the necessary torque for a little movement past
> > midline
> > > > in the
> > > > >
> > > > > > affected direction. From what I understand, it is
> impossible
> > to
> > > > tell
> > > > >
> > > > > > prior to the
> > > > >
> > > > > > surgery whether or not any additional movement will be
> gained
> > > > past
> > > > >
> > > > > > midline and this result is considered a "bonus" that may or
> > may
> > > > not be
> > > > >
> > > > > > achieved. Because the VRT surgery is more complex, many
> > doctors
> > > > do not
> > > > >
> > > > > > perform it. Dr. Rosenbaum at UCLA is considered the master
> of
> > > > this
> > > > >
> > > > > > surgery and most people on this board who have had the VRT
> > went
> > > > to
> > > > >
> > > > > > him. Sometimes the VRT is followed several months later by
> an
> > MRR
> > > > to
> > > > >
> > > > > > achieve full results.
> > > > >
> > > > > >
> > > > >
> > > > > > Side effects of both surgeries are minimal. Both are
> > outpatient
> > > > and
> > > > >
> > > > > > the recovery time is relatively short, especially for small
> > > > children.
> > > > >
> > > > > > The MRR is completely reversible and the results can be
> > adjusted
> > > > with
> > > > >
> > > > > > additional surgeries as necessary. The VRT, because it
> > > > manipulates the
> > > > >
> > > > > > vertical muscles, may be a little riskier. There is a
> chance
> > that
> > > > a
> > > > >
> > > > > > vertical deviation will develop from the surgery (voluntary
> > eye
> > > > >
> > > > > > movement up or down may be affected). This additional risk
> > may be
> > > > one
> > > > >
> > > > > > reason fewer doctors
> > > > >
> > > > > > perform the VRT, but with a skilled surgeon, these risks
> are
> > > > minimized
> > > > >
> > > > > > and they too can be addressed with further outpatient
> surgery
> > as
> > > > >
> > > > > > necessary. Most parents on this board feel that the
> > possibility
> > > > of
> > > > >
> > > > > > some additional movement past midline in the affected
> > direction
> > > > is
> > > > >
> > > > > > worth the risk, and many of them have chosen that route
> with
> > good
> > > > >
> > > > > > results for their children.
> > > > >
> > > > > >
> > > > >
> > > > > > Both surgeries are often covered by insurance.
> > > > >
> > > > > > GOOD LUCK!  Here is his Dr Rosenbaums email. You could send
> > him
> > > > >
> > > > > > pictures or even ask for a refferal in your area.
> > > > >
> > > > > > rosenbaumpatients@ <mailto:rosenbaumpatients@>
> > > > >
> > > > > >
> > > > >
> > > > > >
> > > > >
> > > > > > Best of luck,
> > > > >
> > > > > >
> > > > >
> > > > > > Elenie-----Original Message-----
> > > > >
> > > > > > From: Cliffton <cubbigdog@>
> > > > >
> > > > > > To: duanes@yahoogroups.com
> > > > >
> > > > > > Sent: Sun, 4 May 2008 7:30 pm
> > > > >
> > > > > > Subject: [duane's] My Introduction
> > > > >
> > > > > >
> > > > >
> > > > > > Hello everyone,
> > > > >
> > > > > >
> > > > >
> > > > > > My name is Cliffton and I have Duane's Type I. I am 33
> years
> > old,
> > > > and
> > > > >
> > > > > > have never had any surgery for it, though I wish I had.
> I've
> > had
> > > > to
> > > > >
> > > > > > deal with it since birth. I came across this group and
> > thought I
> > > > would
> > > > >
> > > > > > join to offer support to those who need it.
> > > > >
> > > > > >
> > > > >
> > > > > > If you have any questions, please feel free to ask.
> > > > >
> > > > > >
> > > > >
> > > > > > Thanks,
> > > > >
> > > > > > Cliffton
> > > > >
> > > > > > Richmond, VA
> > > > >
> > > > > >
> > > > >
> > > > > > ----------------------------------------------------------
> > > > >
> > > > > > Plan your next roadtrip with MapQuest.com
> > > > >
> > > > > > <http://www.mapquest.com/?ncid=mpqmap00030000000004>:
> > America's
> > > > #1
> > > > >
> > > > > > Mapping Site.
> > > > >
> > > > > >
> > > > >
> > > >
> > >
> >
>

I was wondering if anyone else considering VRT surgery was given the options
described
by Christoph. I didn't know there was a difference in the type of VRT surgery
performed
depending on whether or not the patient wanted to have MRR surgery afterwards.
I'd be
interested to find out details from anyone that had VRT surgery.
Tiffany


--- In duanes@yahoogroups.com, "jma1721" <jma1721@...> wrote:
>
> --- In duanes@yahoogroups.com, DANIELLE COOPER <danielle143@>
> wrote:
> >Hi Danielle, I am originally from the UK, but live in the US.  My 23
> year old son had MRR surgery a couple of years back and it was pretty
> successful, but he feels there is room for improvement and may
> consider the VRT with Dr. Rosenbaum in LA.  I have heard about Mr.
> Lee at Moorfields, he has a very good reputation and we would
> definitely be heading there if we lived in the UK still. I wish you
> the very best of luck.
> > From what I can gather I'm having vrt surgery. I have been reading
> that not many surgeons want to perform vrt because it is quite risky.
> I am in the uk and my consultant is Mr Fearnley. He has been to Mr
> Lee's seminars in London. Mr Lee is the consultant at Moorfields eye
> hospital. Has anyone heard of theese consultants, or had vrt surgery
> in the uk?
> >
> > ----- Original Message ----
> > From: Christoph J. Gartmann <gartmann@>
> > To: duanes@yahoogroups.com
> > Sent: Monday, 19 May, 2008 9:22:21 PM
> > Subject: RE: [duane's] surgery
> >
> >                 On Mon, 19 May 2008 19:39:27 -0000 "danielle531983"
> > <danielle143@ btinternet. com> wrote:
> >
> > >Since the left muscle in my eye does not work. He is going to
> split the
> > >top and bottom muscles and move them round and attacth them to the
> left
> > >muscle. Apparently this will move my eye into the centre and it
> > >hopefully wont slide to the right anymore. I am scheduled for my
> > >operation in August. Has anyone got any info for me, as I'm told
> it will
> > >have to be done in two goes.
> >
> > I remember a consultation with Dr. Rosenbaum, where he offered two
> > options:
> > a) moving the top and bottom muscle as a whole towards the non-
> working
> >    muscle (around 45 degrees)
> > b) splitting the top and bottom muscle and moving only one half of
> >    each muscle toward the non-working muscle (45 degrees)
> > With a) a follow-up surgery would be necessary (an MRR) whereas
> method
> > b) wouldn't require a second surgery. The disadvantage of b) though
> is
> > that a) has a much better effect. Your description sounds similar
> to b)
> > but then I don't understand why you would need two goes. In
> addition,
> > have you been told of method a)? In addition I am bit doubtful about
> > the idea of attaching half of each eye muscle to the non-working
> > muscle...
> >
> > Regards
> >    Christoph Gartmann
> >
>

Hi Annie,
I'm still kind of amazed with the results of your surgery. I was just wondering
if you had
any prior surgeries. I remember you had mentioned seeing quite a few doctors.
Did you
have surgery more than once?
Tiffany

--- In duanes@yahoogroups.com, "Annie Fitzgerald" <annmariefitzgerald@...>
wrote:
>
>  "I think I had the same type of surgery that you had; MRR but no
> improvement. How much of an improvement do you think it made?"
>
> I had a great improvement after MRR.  I can now turn my left (Duane's) eye
> to the left, and I have better control over my eyes (they wouldnt' drift as
> much) which wouldn't happen before the surgery. However, everyone else says
> that MRR can't fix lateral movement, so I don't know how it work wtih me.
>  It has fixed my head turn.  I have noticed a slight regression (my right
> eye is starting to drift a little inward sometimes).  Also, I have recently
> notice that when I look in the mirror from far away, my right eye and left
> eye both seem a bit unaligned...they both seem to be a bit inward, recently.
>
> "What type of Duane's do you have (maybe that has something to do with it)?"
>
> Type 1 Left eye
>
> "Would you mind telling me where you had the surgery and what doctor
> performed it?"
> I was living in St. Louis, and had the surgery at Barnes-Jewish Hospital
> with Dr. James Shepherd III, with Gill Roper-Hall as a consult.  I didn't
> know about this group until after I had the surgery, and had never heard of
> the famous Dr. Rosenbaum.  I was very pleased with my results.  I have
> noticed a regression, however slight, and I can see what my doctor meant
> when he said " You might need to have it again in 10 years.  Guess I better
> start saving up now.
>
> Hope this helps.
>
> Annie
>
>
> Thanks for sharing.
> Tiffany
>
> On Sun, May 25, 2008 at 4:46 PM, Tiffany <tjc71nj@...> wrote:
>
> >    I think I had the
> > same type of surgery that you had; MRR but no improvement. How much of an
> > improvement do you think it made? What type of Duane's do you have (maybe
> > that has
> > something to do with it? Would you mind telling me where you had the
> > surgery and what
> > doctor performed it?
> >
> > Thanks for sharing.
> > Tiffany
> >
> > --- In duanes@yahoogroups.com <duanes%40yahoogroups.com>, "Annie
> > Fitzgerald" <annmariefitzgerald@> wrote:
> > >
> > > Tiffany,
> > >
> > > I had MRR surgery 3 years ago, and I noticed the same thing- the inside
> > > corner of my right eye (my good eye) is grey. I honestly think that we
> > are
> > > the only ones who notice it since we look closely in the mirror at our
> > eyes
> > > and notice things about ourselves than others due. When I go to different
> > > eye doctors (I travel and move alot), I always ask them, and none of them
> > > say that's it's abnormal, and brush it off. The most recent eye doctor I
> > > went to said the same thing- that it's normal, even for people who
> > haven't
> > > had Duane's or eye surgery, to have slight discoloration.
> > >
> > > I'm sorry that your surgery did not make any improvements. Are you going
> > to
> > > have surgery again?
> > >
> > > -Annie Fitzgerald
> > >
> > > On Sun, May 25, 2008 at 3:41 PM, Tiffany <tjc71nj@> wrote:
> > >
> > > > Hi Candice,
> > > > I'm new to the group as well. I am 36 and had surgery once in my early
> > > > 20's. The surgery
> > > > didn't make any improvement whatsoever. I was wondering if you would
> > mind
> > > > sharing
> > > > what type of surgeries your son had that made such an improvement and
> > what
> > > > doctor
> > > > performed them.
> > > > Also, after my surgery, I noticed that the inside corner of my eye was
> > a
> > > > very light shade of
> > > > grey barely noticeable. I thought it would go away once my eye healed
> > from
> > > > the surgery,
> > > > but it never did. Has anyone else had something similar appear after
> > > > surgery?
> > > > Thanks,
> > > > Tiffany
> > > >
> > > > --- In duanes@yahoogroups.com <duanes%40yahoogroups.com> <duanes%
> > 40yahoogroups.com>, Candice Forbes
> >
> > > > <candiforbes@> wrote:
> > > > >
> > > > > Welcome to the group. First off, Duanes is congenital and happens
> > > > > very early in pregnancy. The nerve to the effected muscle does not
> > > > > work properly. No one knows what causes Duane's, so please do not
> > > > > try to blame yourself. If you are still breast feeding, you already
> > > > > are a great mother.
> > > > >
> > > > > Secondly, many doctors are unfamiliar with Duane's. It is a rare
> > > > > from of strabismus. As for taking her to the doctor sooner, if you
> > > > > were not noticing it too much before, then it obviously it not that
> > > > > bad a case. However, I would look back at pictures. There is
> > > > > something called Sixth nerve palsy that looks the same as Duane's,
> > > > > but it is not from birth. Now that you know what you are looking
> > > > > for, you might be able to see it in some previous pictures. If not,
> > > > > you might ask a few more questions of the opthamologist.
> > > > >
> > > > > Duane's in the scheme of things is not the worse issue to have.
> > > > > There are severity levels, but if you are just now noticing it, it is
> > > > > likely not to be too severe. Many people have Duane's and never need
> > > > > any intervention at all. And they drive cars, play sports (even
> > > > > baseball), become professionals, and live successful lives. So now
> > > > > you should at least take a breath.
> > > > >
> > > > > As for what to do from here, I am attaching some information that
> > > > > includes questions for the doctor and surgery options. Just realize
> > > > > that if your daughter can look straight ahead and her head is aligned
> > > > > straight ahead, surgery will not be needed. Surgery is used when a
> > > > > faceturn occurs (child moves their face to one side to align the eyes
> > > > > to look straight). In my sons case, he turned his head 30 degrees to
> > > > > look straight ahead. After two surgeries(2 years ago, he is now 5),
> > > > > no one notices he has an issue at all. For most children monitoring
> > > > > is enough since they have no faceturn, they just adapt by turning
> > > > > their head rather than their eyes in that direction. As far as
> > > > > glasses to correct, they are only needed to correct a faceturn and
> > > > > are used in some cases just as surgery is used in some cases.
> > > > >
> > > > > Hope all of this helps, but please understand that many of us have
> > > > > gone through the same panic and the same lack of information from
> > > > > doctors ourselves. Someone is always willing to share their
> > > > > experience because we have all been there, so please ask more
> > > > > questions. Hope you are feeling a little less panicky. Candi
> > > > >
> > > > >
> > > > > __________________________________________________________
> > > > > _____
> > > > > Questions for your Doctor:
> > > > > 1) Are the eyes aligned in the straight-ahead position
> > > > > 2) Is there a head turn or head tilt
> > > > > 3) Is there any evidence of it being bilateral
> > > > > 4) Is there fusion and depth perception. If there is fusion, how
> > much?
> > > > > 5) Is surgery an option
> > > > > 6) If surgery is an option, does the PO have experience with both MRR
> > > > > (medial rectus recession) and VRT (Vertical Rectus Transposition).
> > > > > Most POs have a lot of experience with MRR, very few have experience
> > > > > with VRT (and they may not call it that, even if they do have the
> > > > > experience). MRR can align the eyes. VRT can align the eyes and
> > > > > usually gives some lateral movement to Duane's patients with Type I.
> > > > >
> > > > > Below is from a post I found on the 2 surgeries:
> > > > >
> > > > > THE MRR:
> > > > >
> > > > > The MRR surgery is the more basic of the two and is used only to
> > > > > provide better central alignment. For most patients, this procedure
> > > > > simply reduces any head turn. The MRR is not recommended for (and
> > > > > will not help) patients who already have good central alignment.
> > > > > How duanes affects central alignment: In addition to preventing the
> > > > > eye from moving in the affected direction, the lack of resistance
> > > > > from the immobile muscle can lead the opposing (working) eye muscle
> > > > > to become very tight in some duanes patients. The working muscle then
> > > > > pulls the eye off center and prevents the eye from resting at
> > > > > midline. The MRR corrects this side effect of duanes by repositioning
> > > > > the tightened working muscle, unattaching it from the eye, and
> > > > > reconnecting it farther back on the eye. This procedure allows the
> > > > > eye to rest at midline (allows for better central
> > > > > alignment). In older children (and adults) adjustable sutures are
> > > > > often used during the MRR so that alignment can be further adjusted
> > > > > as necessary several hours post-op.
> > > > >
> > > > > THE VRT: (often gives outward movement) - child must have some head
> > > > > turn for this surgery
> > > > >
> > > > > The VRT surgery is more complex. The basic idea behind the VRT is to
> > > > > reposition the vertical eye muscles to provide some resistance
> > > > > against the working lateral muscle. The result is a "tripod" of
> > > > > muscles that move the eye. In addition to discouraging the working
> > > > > lateral muscle from further tightening, the repositioned vertical
> > > > > muscles sometimes provide the necessary torque for a little movement
> > > > > past midline in the affected direction. From what I understand, it is
> > > > > impossible to tell prior to the
> > > > > surgery whether or not any additional movement will be gained past
> > > > > midline and this result is considered a "bonus" that may or may not
> > > > > be achieved. Because the VRT surgery is more complex, many doctors do
> > > > > not perform it. Dr. Rosenbaum at UCLA is considered the master of
> > > > > this surgery and most people on this board who have had the VRT went
> > > > > to him. Sometimes the VRT is followed several months later by an MRR
> > > > > to achieve full results.
> > > > >
> > > > > Side effects of both surgeries are minimal. Both are outpatient and
> > > > > the recovery time is relatively short, especially for small children.
> > > > > The MRR is completely reversible and the results can be adjusted with
> > > > > additional surgeries as necessary. The VRT, because it manipulates
> > > > > the vertical muscles, may be a little riskier. There is a chance that
> > > > > a vertical deviation will develop from the surgery (voluntary eye
> > > > > movement up or down may be affected). This additional risk may be one
> > > > > reason fewer doctors
> > > > > perform the VRT, but with a skilled surgeon, these risks are
> > > > > minimized and they too can be addressed with further outpatient
> > > > > surgery as necessary. Most parents on this board feel that the
> > > > > possibility of some additional movement past midline in the affected
> > > > > direction is worth the risk, and many of them have chosen that route
> > > > > with good results for their children.Both surgeries are often covered
> > > > > by insurance.
> > > > >
> > > > > GOOD LUCK! Here is his Dr Rosenbaums email. You could send him
> > > > > pictures or even ask for a refferal in your area.
> > > > >
> > > > > rosenbaumpatients@
> > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > >
> > > > > On May 23, 2008, at 12:10 PM, kykimhill wrote:
> > > > >
> > > > > > I wanted to add one more question.
> > > > > > Why didn't I notice this before? I mean I've nursed her all along
> > and
> > > > > > didn't notice it until recently. Can she develop this syndrome
> > > > > > suddenly? I'm just thinking if I found this out sooner, maybe
> > > > > > something could have been done already.
> > > > > > She was born full term, not underweight, healthy, no family history
> > of
> > > > > > this condition.
> > > > > > Can you tell I'm nervous about this whole thing?? :I
> > > > > > whew...
> > > > > >
> > > > > > --- In duanes@yahoogroups.com <duanes%40yahoogroups.com> <duanes
%
> > 40yahoogroups.com>, "kykimhill"
> >
> > > > <kykimhill@> wrote:
> > > > > > >
> > > > > > > Hello,
> > > > > > > I am a new member. I've noticed past a few months that my
> > daughter's
> > > > > > > right eye would cross when she looks at me while nursing on my
> > left
> > > > > > > side. I thought she had problem with her right eye but yesterday
> > > > > > > after a visit to a eye doctor, he told me my daughter has Duane
> > > > > > > Syndrome. He didn't explain what type or what can be done or
> > > > > > anything
> > > > > > > and rushed me out the door. He just wants to follow up on her in
> > 6
> > > > > > > months.
> > > > > > > He said it is her left eye that is not moving outward. When she
> > > > > > looks
> > > > > > > straight, her eyes are straight.
> > > > > > > Now my questions is what type of Duane is this? (It looks like
> > the
> > > > > > > right inset picture of the boy in this groups front homepage).
> > > > > > >
> > > > > > > Is there anything can be done to fix this condition? Other than
> > > > > > > surgery (if there is any surgery can be done), can she wear
> > certain
> > > > > > > glasses to improve her eye muscle? What kind of food can I feed
> > her
> > > > > > > to strengthen/develop eye muscle?
> > > > > > > Is she going to have normal vision or would it be double vision?
> > > > > > > Sometimes when she turns her head to look different direction,
> > her
> > > > > > > right eyes crosses, is this normal for Duane S?
> > > > > > > When I was researching I thought she had Strabismus but I don't
> > know
> > > > > > > now. Will she able to drive ok when she get old?
> > > > > > > What can I do? Is there anything can be done? I don't want her to
> > > > > > > have a bad eye sight or get this worse.
> > > > > > > Thank you for reading my long post and any encouragement/advice.
> > > > > > > Kim
> > > > > > >
> > > > > >
> > > > > >
> > > > > >
> > > > >
> > > >
> > > >
> > > >
> > >
> > >
> > >
> > > -
> > >
> >
> >
> >
>

Sent from my Verizon Wireless BlackBerry

-----Original Message-----
From: HANAA GADELRAB <hmom76@...>

Date: Mon, 9 Jun 2008 07:16:28
To:duanes@yahoogroups.com
Subject: Re: [duane's] Dr. Rosenbaum - Does he have a cure for Duane's?


Hi Joanne,
i live in toronot ,too and i went to two doctors and they said the same
...nothing they can do to duane .
i have an appointment on july 2nd with dr david smith (416-783-3375),i got his
name from refferal list ,he works in toronto hospital of sick children,try to
call him and book appointment as he goes to his clinic only twice a week.
in the same time i reschedule my appointment with doctor rosenbaum to august .
thanks ,wish you the best
hanaa


--- On Sun, 6/8/08, Liane Herbst <liane@...> wrote:
  From: Liane Herbst <liane@...>
Subject: Re: [duane's] Dr. Rosenbaum - Does he have a cure for Duane's?
To: duanes@yahoogroups.com
Date: Sunday, June 8, 2008, 1:20 PM





There are two surgeries that can help Duane's, but they are only performed when
there is a head turn of 10 degrees or greater.
 
Most Pediatric Opthalmologists will perform an MRR (medial rectus recession) to
correct a Duane's headturn.  This weakens the good muscle so that the eye can
"relax" into a straight-ahead position.
 
There is also another surgery, called VRT  (vertical rectus transposition) which
will correct the headturn and which also usually (but not always) gives some
lateral movement in the affected eye.  Dr. Rosenbaum is one of very few doctors
who will perform this surgery.  It is somewhat riskier, but most of us on this
board have chosen it over the MRR.
 
-- Liane
 
 
----- Original Message -----
From: jgardos <mailto:jgardos@...>
To: duanes@yahoogroups. com <mailto:duanes@yahoogroups.com>
Sent: Saturday, June 07, 2008 4:02 PM
Subject: [duane's] Dr. Rosenbaum - Does he have a cure for Duane's?



Hi Everyone, I have been reading many post on how people are having
surgery to correct Duane's.
My son has Duane in his left eye. He has NO head turn (yet). I have
been to many, many doctor's in Toronto. They have all told me there is
NO CURE for Duane, no surgery to fix the eye. There is no nerve and
nothing can be done to correct this.

So my question is to those of you that have been to Dr. Rosenbaum, does
he have some kind of method that he uses to correct Duane. I feel so
lost and have no idea if it is at all possible. Is there a way to split
an existing nerve and connect it to the muscle that doesn't have a
nerve?
What is it exactly that Dr. Rosenbaum does?
Please help.
Thank you all in advance.
Joanne

--- In duanes@yahoogroups.com, DANIELLE COOPER <danielle143@...>
wrote:
>Hi Danielle, I am originally from the UK, but live in the US.  My 23
year old son had MRR surgery a couple of years back and it was pretty
successful, but he feels there is room for improvement and may
consider the VRT with Dr. Rosenbaum in LA.  I have heard about Mr.
Lee at Moorfields, he has a very good reputation and we would
definitely be heading there if we lived in the UK still. I wish you
the very best of luck.
> From what I can gather I'm having vrt surgery. I have been reading
that not many surgeons want to perform vrt because it is quite risky.
I am in the uk and my consultant is Mr Fearnley. He has been to Mr
Lee's seminars in London. Mr Lee is the consultant at Moorfields eye
hospital. Has anyone heard of theese consultants, or had vrt surgery
in the uk?
>
> ----- Original Message ----
> From: Christoph J. Gartmann <gartmann@...>
> To: duanes@yahoogroups.com
> Sent: Monday, 19 May, 2008 9:22:21 PM
> Subject: RE: [duane's] surgery
>
>                 On Mon, 19 May 2008 19:39:27 -0000 "danielle531983"
> <danielle143@ btinternet. com> wrote:
>
> >Since the left muscle in my eye does not work. He is going to
split the
> >top and bottom muscles and move them round and attacth them to the
left
> >muscle. Apparently this will move my eye into the centre and it
> >hopefully wont slide to the right anymore. I am scheduled for my
> >operation in August. Has anyone got any info for me, as I'm told
it will
> >have to be done in two goes.
>
> I remember a consultation with Dr. Rosenbaum, where he offered two
> options:
> a) moving the top and bottom muscle as a whole towards the non-
working
>    muscle (around 45 degrees)
> b) splitting the top and bottom muscle and moving only one half of
>    each muscle toward the non-working muscle (45 degrees)
> With a) a follow-up surgery would be necessary (an MRR) whereas
method
> b) wouldn't require a second surgery. The disadvantage of b) though
is
> that a) has a much better effect. Your description sounds similar
to b)
> but then I don't understand why you would need two goes. In
addition,
> have you been told of method a)? In addition I am bit doubtful about
> the idea of attaching half of each eye muscle to the non-working
> muscle...
>
> Regards
>    Christoph Gartmann
>

--- In duanes@yahoogroups.com, "jma1721" <jma1721@...> wrote:
>Hi, I must be going senile I had forgotten that I had already
replied to you, just posted again today lol.

> --- In duanes@yahoogroups.com, "coreywoolhouse" <coreywoolhouse@>
> wrote:
> >I believe the faceturn developed later.  His alignment was off as
a
> baby, but improved so that we did not notice anything wrong for a
few
> years.  Around the age of 20 he started complaining about his
vision
> blurry and ghosting and we did notice the alignment was not good
even
> in straight on position.  It is so much better now.  Has anyone
> explained to you that Duanes is to do with the 6th nerve and that
it
> is missing.  I would advise you to check this site for good
pediatric
> opthalmologists in your area.  I wish you the very best of luck.
>
> > How was your son's alignment before and after surgery? Did he
always
> > have a face turn or did it develop in his late teens/early
twenties?
> >
> > I'd be pretty chuffed if I got my alignment straight. When it was
> > straight, I never really noticed that when I'd look to the left,
my
> > right eye wouldn't follow. lol I was oblivious
> >
> > --- In duanes@yahoogroups.com, "jma1721" <jma1721@> wrote:
> > >
> > > --- In duanes@yahoogroups.com, elenie2666@ wrote:
> > > >I second what the last person just wrote to you.  We had so
many
> > > different opinions regarding our son.  He eventually had mmr
> surgery
> > > at age 21.  Cosmetically it is better, but he does not have an
> > > increase in movement, which we expected.  He considers from
time
> to
> > > time the option of VRT to gain further movement.  Dont give up,
> we
> > > had 3 opinions (pediatric opthamologists).  Our son is now
seeing
> a
> > > neurologist to try glasses with prisms as his focusing skills
are
> not
> > > good.
> > >
> > >
> > >  > It is the lack of the nerve to direct the muscles that is
not
> > > present. Keep asking and getting referred or find someone who
> > > specializes in Duane's...Just 5 years ago we were told there
was
> > > nothing to do for our daughter. They were, however, wrong. VRT
&
> MRR
> > > are both options with VRT offering the possible perk of lateral
> > > movement. You can see picture's before & after in the photo
> section
> > > titled "Nicolette before & after VRT". Best of luck and don't
> give up
> > > until a specialist like Dr Rosenbaum gives you your options!Â
> > > >
> > > >
> > > > -----Original Message-----
> > > > From: CBD <cubbigdog@>
> > > > To: duanes@yahoogroups.com
> > > > Sent: Mon, 5 May 2008 5:36 pm
> > > > Subject: Re: [duane's] My Introduction
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > >
> > > > Hi there. I have Type I. 25 years ago when I remember going
to
> the
> > > >
> > > > Virginia Eye Institute and the Childrens Hospital in VA, I
> think I
> > > was
> > > >
> > > > told I didn't even have the eye muscles on the one side of my
> left
> > > eye.
> > > >
> > > > I also have that droopy slightly sunken look on that same
eye,
> so I
> > > also
> > > >
> > > > believed it. I keep asking my regular eye doctor and I have a
> > > >
> > > > neurologist who happens to specialize in neural-eye
conditions,
> and
> > > both
> > > >
> > > > tell me there really isn't any surgery for me to fix it.
> > > >
> > > >
> > > >
> > > > Cliffton
> > > >
> > > >
> > > >
> > > > elenie2666@ wrote:
> > > >
> > > > > Hi Clifton,
> > > >
> > > > >
> > > >
> > > > > What type of Duane's do you have? As you will read thru
these
> > > post's
> > > >
> > > > > you may find that surgery is now an option for you. VRT &
MRR
> are
> > > the
> > > >
> > > > > 2 that offer results. Welcome and hope you find a lot of
> useful
> > > >
> > > > > information:)
> > > >
> > > > >
> > > >
> > > > > Below is some info I saved when researching for my
daughter's
> > > condition.
> > > >
> > > > > -------------------------
> > > >
> > > > >
> > > >
> > > > >
> > > >
> > > > > My daughter was diagnosed with Duanes at 8 months with Type
I
> > > (can't
> > > >
> > > > > move eye outward)...thankfully I found this site and Dr
> > > Rosenbaums
> > > >
> > > > > name..Dr Rosenbaum is one of, if not the leader in the
> treatment
> > > of
> > > >
> > > > > Duanes. He is at The Jules Stein Eye Institute in Los
Angeles
> at
> > > >
> > > > > UCLA...it is a research hospital. Nicolette had VRT
surgery
> at
> > > >
> > > > > 2yrs.old with a follow up MRR 6 month's later... Her
results
> were
> > > >
> > > > > excellent, I have posted picture's in the group photo's
> titled
> > > >
> > > > > "Nicolette Before & After VRT". Below is info I saved
> compiled
> > > from
> > > >
> > > > > various post's on the treatment option's...best of luck!
> > > >
> > > > >
> > > >
> > > > >
> > > >
> > > > > --------------------------------
> > > >
> > > > > Below is a list of questions I found in a post from someone
> on
> > > the
> > > >
> > > > > yahoogroups....it seemed to cover everything and if a PO
> seems
> > > unclear
> > > >
> > > > > on VRT than you definitely need to look for other
options....
> > > >
> > > > >
> > > >
> > > > > 1) Are the eyes aligned in the straight-ahead position
> > > >
> > > > > 2) Is there a head turn or head tilt
> > > >
> > > > > 3) Is there any evidence of it being bilateral
> > > >
> > > > > 4) Is there fusion and depth perception.  If there is
fusion,
> how
> > > much?
> > > >
> > > > > 5) Is surgery an option
> > > >
> > > > > 6) If surgery is an option, does the PO have experience
with
> both
> > > MRR
> > > >
> > > > > (medial rectus recession) and VRT (Vertical Rectus
> > > Transposition).
> > > >
> > > > > Most POs have a lot of experience with MRR, very few have
> > > experience
> > > >
> > > > > with VRT (and they may not call it that, even if they do
have
> the
> > > >
> > > > > experience).  MRR can align the eyes.  VRT can align the
eyes
> and
> > > >
> > > > > usually gives some lateral movement to Duane's patients
with
> Type
> > > I.
> > > >
> > > > >
> > > >
> > > > > *Here is a post I found on the 2 surgeries:*
> > > >
> > > > >
> > > >
> > > > > THE MRR:
> > > >
> > > > >
> > > >
> > > > > The MRR surgery is the more basic of the two and is used
only
> to
> > > >
> > > > > provide better central alignment. For most patients, this
> > > procedure
> > > >
> > > > > simply reduces any head turn. The MRR is not recommended
for
> (and
> > > will
> > > >
> > > > > not help) patients who already have good central alignment.
> > > >
> > > > > How duanes affects central alignment: In addition to
> preventing
> > > the
> > > >
> > > > > eye from moving in the affected direction, the lack of
> resistance
> > > from
> > > >
> > > > > the immobile muscle can lead the opposing (working) eye
> muscle to
> > > >
> > > > > become very tight in some duanes patients. The working
muscle
> > > then
> > > >
> > > > > pulls the eye off center and prevents the eye from resting
at
> > > midline.
> > > >
> > > > > The MRR corrects this side effect of duanes by
repositioning
> the
> > > >
> > > > > tightened working muscle, unattaching it from the eye, and
> > > >
> > > > > reconnecting it farther back on the eye. This procedure
> allows
> > > the eye
> > > >
> > > > > to rest at midline (allows for better central
> > > >
> > > > > alignment). In older children (and adults) adjustable
sutures
> are
> > > >
> > > > > often used during the MRR so that alignment can be further
> > > adjusted as
> > > >
> > > > > necessary several hours post-op.
> > > >
> > > > >
> > > >
> > > > > THE VRT: (often gives outward movement)
> > > >
> > > > >
> > > >
> > > > > The VRT surgery is more complex. The basic idea behind the
> VRT is
> > > to
> > > >
> > > > > reposition the vertical eye muscles to provide some
> resistance
> > > against
> > > >
> > > > > the working lateral muscle. The result is a "tripod" of
> muscles
> > > that
> > > >
> > > > > move the eye. In addition to discouraging the working
lateral
> > > muscle
> > > >
> > > > > from further tightening, the repositioned vertical muscles
> > > sometimes
> > > >
> > > > > provide the necessary torque for a little movement past
> midline
> > > in the
> > > >
> > > > > affected direction. From what I understand, it is
impossible
> to
> > > tell
> > > >
> > > > > prior to the
> > > >
> > > > > surgery whether or not any additional movement will be
gained
> > > past
> > > >
> > > > > midline and this result is considered a "bonus" that may or
> may
> > > not be
> > > >
> > > > > achieved. Because the VRT surgery is more complex, many
> doctors
> > > do not
> > > >
> > > > > perform it. Dr. Rosenbaum at UCLA is considered the master
of
> > > this
> > > >
> > > > > surgery and most people on this board who have had the VRT
> went
> > > to
> > > >
> > > > > him. Sometimes the VRT is followed several months later by
an
> MRR
> > > to
> > > >
> > > > > achieve full results.
> > > >
> > > > >
> > > >
> > > > > Side effects of both surgeries are minimal. Both are
> outpatient
> > > and
> > > >
> > > > > the recovery time is relatively short, especially for small
> > > children.
> > > >
> > > > > The MRR is completely reversible and the results can be
> adjusted
> > > with
> > > >
> > > > > additional surgeries as necessary. The VRT, because it
> > > manipulates the
> > > >
> > > > > vertical muscles, may be a little riskier. There is a
chance
> that
> > > a
> > > >
> > > > > vertical deviation will develop from the surgery (voluntary
> eye
> > > >
> > > > > movement up or down may be affected). This additional risk
> may be
> > > one
> > > >
> > > > > reason fewer doctors
> > > >
> > > > > perform the VRT, but with a skilled surgeon, these risks
are
> > > minimized
> > > >
> > > > > and they too can be addressed with further outpatient
surgery
> as
> > > >
> > > > > necessary. Most parents on this board feel that the
> possibility
> > > of
> > > >
> > > > > some additional movement past midline in the affected
> direction
> > > is
> > > >
> > > > > worth the risk, and many of them have chosen that route
with
> good
> > > >
> > > > > results for their children.
> > > >
> > > > >
> > > >
> > > > > Both surgeries are often covered by insurance.
> > > >
> > > > > GOOD LUCK!  Here is his Dr Rosenbaums email. You could send
> him
> > > >
> > > > > pictures or even ask for a refferal in your area.
> > > >
> > > > > rosenbaumpatients@ <mailto:rosenbaumpatients@>
> > > >
> > > > >
> > > >
> > > > >
> > > >
> > > > > Best of luck,
> > > >
> > > > >
> > > >
> > > > > Elenie-----Original Message-----
> > > >
> > > > > From: Cliffton <cubbigdog@>
> > > >
> > > > > To: duanes@yahoogroups.com
> > > >
> > > > > Sent: Sun, 4 May 2008 7:30 pm
> > > >
> > > > > Subject: [duane's] My Introduction
> > > >
> > > > >
> > > >
> > > > > Hello everyone,
> > > >
> > > > >
> > > >
> > > > > My name is Cliffton and I have Duane's Type I. I am 33
years
> old,
> > > and
> > > >
> > > > > have never had any surgery for it, though I wish I had.
I've
> had
> > > to
> > > >
> > > > > deal with it since birth. I came across this group and
> thought I
> > > would
> > > >
> > > > > join to offer support to those who need it.
> > > >
> > > > >
> > > >
> > > > > If you have any questions, please feel free to ask.
> > > >
> > > > >
> > > >
> > > > > Thanks,
> > > >
> > > > > Cliffton
> > > >
> > > > > Richmond, VA
> > > >
> > > > >
> > > >
> > > > > ----------------------------------------------------------
> > > >
> > > > > Plan your next roadtrip with MapQuest.com
> > > >
> > > > > <http://www.mapquest.com/?ncid=mpqmap00030000000004>:
> America's
> > > #1
> > > >
> > > > > Mapping Site.
> > > >
> > > > >
> > > >
> > >
> >
>

--- In duanes@yahoogroups.com, "coreywoolhouse" <coreywoolhouse@...>
wrote:
>Hi, Sorry to be so late replying to your email.  His alignment
before surgery was not good - it had deteriorated when he was in High
School.  After surgery his alignment is now good, but he is not happy
as his right eye now cannot look as far right as it used to.  He was
opposed to VRT, but has said he would consider it in the future.
From my perspective I see a big difference in his alignment, he still
cannot look left any more than before and there was also the
difference made to his right eye, but I think on the whole it gave
him more confidence when looking at people.  I hope this answers your
questions ok.  Good Luck, Joyce  (let me know ifyou need to know
anything else).
> How was your son's alignment before and after surgery? Did he always
> have a face turn or did it develop in his late teens/early twenties?
>
> I'd be pretty chuffed if I got my alignment straight. When it was
> straight, I never really noticed that when I'd look to the left, my
> right eye wouldn't follow. lol I was oblivious
>
> --- In duanes@yahoogroups.com, "jma1721" <jma1721@> wrote:
> >
> > --- In duanes@yahoogroups.com, elenie2666@ wrote:
> > >I second what the last person just wrote to you.  We had so many
> > different opinions regarding our son.  He eventually had mmr
surgery
> > at age 21.  Cosmetically it is better, but he does not have an
> > increase in movement, which we expected.  He considers from time
to
> > time the option of VRT to gain further movement.  Dont give up,
we
> > had 3 opinions (pediatric opthamologists).  Our son is now seeing
a
> > neurologist to try glasses with prisms as his focusing skills are
not
> > good.
> >
> >
> >  > It is the lack of the nerve to direct the muscles that is not
> > present. Keep asking and getting referred or find someone who
> > specializes in Duane's...Just 5 years ago we were told there was
> > nothing to do for our daughter. They were, however, wrong. VRT &
MRR
> > are both options with VRT offering the possible perk of lateral
> > movement. You can see picture's before & after in the photo
section
> > titled "Nicolette before & after VRT". Best of luck and don't
give up
> > until a specialist like Dr Rosenbaum gives you your options!Â
> > >
> > >
> > > -----Original Message-----
> > > From: CBD <cubbigdog@>
> > > To: duanes@yahoogroups.com
> > > Sent: Mon, 5 May 2008 5:36 pm
> > > Subject: Re: [duane's] My Introduction
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > Hi there. I have Type I. 25 years ago when I remember going to
the
> > >
> > > Virginia Eye Institute and the Childrens Hospital in VA, I
think I
> > was
> > >
> > > told I didn't even have the eye muscles on the one side of my
left
> > eye.
> > >
> > > I also have that droopy slightly sunken look on that same eye,
so I
> > also
> > >
> > > believed it. I keep asking my regular eye doctor and I have a
> > >
> > > neurologist who happens to specialize in neural-eye conditions,
and
> > both
> > >
> > > tell me there really isn't any surgery for me to fix it.
> > >
> > >
> > >
> > > Cliffton
> > >
> > >
> > >
> > > elenie2666@ wrote:
> > >
> > > > Hi Clifton,
> > >
> > > >
> > >
> > > > What type of Duane's do you have? As you will read thru these
> > post's
> > >
> > > > you may find that surgery is now an option for you. VRT & MRR
are
> > the
> > >
> > > > 2 that offer results. Welcome and hope you find a lot of
useful
> > >
> > > > information:)
> > >
> > > >
> > >
> > > > Below is some info I saved when researching for my daughter's
> > condition.
> > >
> > > > -------------------------
> > >
> > > >
> > >
> > > >
> > >
> > > > My daughter was diagnosed with Duanes at 8 months with Type I
> > (can't
> > >
> > > > move eye outward)...thankfully I found this site and Dr
> > Rosenbaums
> > >
> > > > name..Dr Rosenbaum is one of, if not the leader in the
treatment
> > of
> > >
> > > > Duanes. He is at The Jules Stein Eye Institute in Los Angeles
at
> > >
> > > > UCLA...it is a research hospital. Nicolette had VRT surgery
at
> > >
> > > > 2yrs.old with a follow up MRR 6 month's later... Her results
were
> > >
> > > > excellent, I have posted picture's in the group photo's
titled
> > >
> > > > "Nicolette Before & After VRT". Below is info I saved
compiled
> > from
> > >
> > > > various post's on the treatment option's...best of luck!
> > >
> > > >
> > >
> > > >
> > >
> > > > --------------------------------
> > >
> > > > Below is a list of questions I found in a post from someone
on
> > the
> > >
> > > > yahoogroups....it seemed to cover everything and if a PO
seems
> > unclear
> > >
> > > > on VRT than you definitely need to look for other options....
> > >
> > > >
> > >
> > > > 1) Are the eyes aligned in the straight-ahead position
> > >
> > > > 2) Is there a head turn or head tilt
> > >
> > > > 3) Is there any evidence of it being bilateral
> > >
> > > > 4) Is there fusion and depth perception.  If there is fusion,
how
> > much?
> > >
> > > > 5) Is surgery an option
> > >
> > > > 6) If surgery is an option, does the PO have experience with
both
> > MRR
> > >
> > > > (medial rectus recession) and VRT (Vertical Rectus
> > Transposition).
> > >
> > > > Most POs have a lot of experience with MRR, very few have
> > experience
> > >
> > > > with VRT (and they may not call it that, even if they do have
the
> > >
> > > > experience).  MRR can align the eyes.  VRT can align the eyes
and
> > >
> > > > usually gives some lateral movement to Duane's patients with
Type
> > I.
> > >
> > > >
> > >
> > > > *Here is a post I found on the 2 surgeries:*
> > >
> > > >
> > >
> > > > THE MRR:
> > >
> > > >
> > >
> > > > The MRR surgery is the more basic of the two and is used only
to
> > >
> > > > provide better central alignment. For most patients, this
> > procedure
> > >
> > > > simply reduces any head turn. The MRR is not recommended for
(and
> > will
> > >
> > > > not help) patients who already have good central alignment.
> > >
> > > > How duanes affects central alignment: In addition to
preventing
> > the
> > >
> > > > eye from moving in the affected direction, the lack of
resistance
> > from
> > >
> > > > the immobile muscle can lead the opposing (working) eye
muscle to
> > >
> > > > become very tight in some duanes patients. The working muscle
> > then
> > >
> > > > pulls the eye off center and prevents the eye from resting at
> > midline.
> > >
> > > > The MRR corrects this side effect of duanes by repositioning
the
> > >
> > > > tightened working muscle, unattaching it from the eye, and
> > >
> > > > reconnecting it farther back on the eye. This procedure
allows
> > the eye
> > >
> > > > to rest at midline (allows for better central
> > >
> > > > alignment). In older children (and adults) adjustable sutures
are
> > >
> > > > often used during the MRR so that alignment can be further
> > adjusted as
> > >
> > > > necessary several hours post-op.
> > >
> > > >
> > >
> > > > THE VRT: (often gives outward movement)
> > >
> > > >
> > >
> > > > The VRT surgery is more complex. The basic idea behind the
VRT is
> > to
> > >
> > > > reposition the vertical eye muscles to provide some
resistance
> > against
> > >
> > > > the working lateral muscle. The result is a "tripod" of
muscles
> > that
> > >
> > > > move the eye. In addition to discouraging the working lateral
> > muscle
> > >
> > > > from further tightening, the repositioned vertical muscles
> > sometimes
> > >
> > > > provide the necessary torque for a little movement past
midline
> > in the
> > >
> > > > affected direction. From what I understand, it is impossible
to
> > tell
> > >
> > > > prior to the
> > >
> > > > surgery whether or not any additional movement will be gained
> > past
> > >
> > > > midline and this result is considered a "bonus" that may or
may
> > not be
> > >
> > > > achieved. Because the VRT surgery is more complex, many
doctors
> > do not
> > >
> > > > perform it. Dr. Rosenbaum at UCLA is considered the master of
> > this
> > >
> > > > surgery and most people on this board who have had the VRT
went
> > to
> > >
> > > > him. Sometimes the VRT is followed several months later by an
MRR
> > to
> > >
> > > > achieve full results.
> > >
> > > >
> > >
> > > > Side effects of both surgeries are minimal. Both are
outpatient
> > and
> > >
> > > > the recovery time is relatively short, especially for small
> > children.
> > >
> > > > The MRR is completely reversible and the results can be
adjusted
> > with
> > >
> > > > additional surgeries as necessary. The VRT, because it
> > manipulates the
> > >
> > > > vertical muscles, may be a little riskier. There is a chance
that
> > a
> > >
> > > > vertical deviation will develop from the surgery (voluntary
eye
> > >
> > > > movement up or down may be affected). This additional risk
may be
> > one
> > >
> > > > reason fewer doctors
> > >
> > > > perform the VRT, but with a skilled surgeon, these risks are
> > minimized
> > >
> > > > and they too can be addressed with further outpatient surgery
as
> > >
> > > > necessary. Most parents on this board feel that the
possibility
> > of
> > >
> > > > some additional movement past midline in the affected
direction
> > is
> > >
> > > > worth the risk, and many of them have chosen that route with
good
> > >
> > > > results for their children.
> > >
> > > >
> > >
> > > > Both surgeries are often covered by insurance.
> > >
> > > > GOOD LUCK!  Here is his Dr Rosenbaums email. You could send
him
> > >
> > > > pictures or even ask for a refferal in your area.
> > >
> > > > rosenbaumpatients@ <mailto:rosenbaumpatients@>
> > >
> > > >
> > >
> > > >
> > >
> > > > Best of luck,
> > >
> > > >
> > >
> > > > Elenie-----Original Message-----
> > >
> > > > From: Cliffton <cubbigdog@>
> > >
> > > > To: duanes@yahoogroups.com
> > >
> > > > Sent: Sun, 4 May 2008 7:30 pm
> > >
> > > > Subject: [duane's] My Introduction
> > >
> > > >
> > >
> > > > Hello everyone,
> > >
> > > >
> > >
> > > > My name is Cliffton and I have Duane's Type I. I am 33 years
old,
> > and
> > >
> > > > have never had any surgery for it, though I wish I had. I've
had
> > to
> > >
> > > > deal with it since birth. I came across this group and
thought I
> > would
> > >
> > > > join to offer support to those who need it.
> > >
> > > >
> > >
> > > > If you have any questions, please feel free to ask.
> > >
> > > >
> > >
> > > > Thanks,
> > >
> > > > Cliffton
> > >
> > > > Richmond, VA
> > >
> > > >
> > >
> > > > ----------------------------------------------------------
> > >
> > > > Plan your next roadtrip with MapQuest.com
> > >
> > > > <http://www.mapquest.com/?ncid=mpqmap00030000000004>:
America's
> > #1
> > >
> > > > Mapping Site.
> > >
> > > >
> > >
> >
>

----- Original Message -----

From: jgardos

To: duanes@yahoogroups.com

Sent: Saturday, June 07, 2008 4:02 PM

Subject: [duane's] Dr. Rosenbaum - Does he have a cure for Duane's?

Hi Everyone, I have been reading many post on how people are having
surgery to correct Duane's.
My son has Duane in his left eye. He has NO head turn (yet). I have
been to many, many doctor's in Toronto. They have all told me there is
NO CURE for Duane, no surgery to fix the eye. There is no nerve and
nothing can be done to correct this.

So my question is to those of you that have been to Dr. Rosenbaum, does
he have some kind of method that he uses to correct Duane. I feel so
lost and have no idea if it is at all possible. Is there a way to split
an existing nerve and connect it to the muscle that doesn't have a
nerve?
What is it exactly that Dr. Rosenbaum does?
Please help.
Thank you all in advance.
Joanne

Hi Everyone, I have been reading many post on how people are having
surgery to correct Duane's.
My son has Duane in his left eye. He has NO head turn (yet). I have
been to many, many doctor's in Toronto. They have all told me there is
NO CURE for Duane, no surgery to fix the eye. There is no nerve and
nothing can be done to correct this.

So my question is to those of you that have been to Dr. Rosenbaum, does
he have some kind of method that he uses to correct Duane. I feel so
lost and have no idea if it is at all possible. Is there a way to split
an existing nerve and connect it to the muscle that doesn't have a
nerve?
What is it exactly that Dr. Rosenbaum does?
Please help.
Thank you all in advance.
Joanne

On Fri, 06 Jun 2008 09:29:47 -0000 "James" <s57100204@...>
wrote:
>My doctor told me that any operation was as likely to make matters
>worse as rectify the problem.
>
>However, this may be because of my age (I'm 49) and the fact that my
>brain has adapted over the years.

Sounds a bit strange to me. I have had VRT and MRR at the age of 46 and
things are definitely better now.

Regards,
    Christoph Gartmann

My doctor told me that any operation was as likely to make matters
worse as rectify the problem.

However, this may be because of my age (I'm 49) and the fact that my
brain has adapted over the years.

Reading about the insurance has made me even more thankful for the
National Health Service!

----- Original Message -----

From: coreywoolhouse

To: duanes@yahoogroups.com

Sent: Thursday, June 05, 2008 6:34 AM

Subject: Re: [duane's] new to the group

So, unlike some - he isn't in the profession of performing surgery for
future possibilities.

--- In duanes@yahoogroups.com, Candice Forbes <candiforbes@...> wrote:
>
> Based on my conversations with Dr Rosenbaum, under a 10 degree head
> turn is not surgical. For what it is worth, Candi
> On Jun 5, 2008, at 4:26 AM, coreywoolhouse wrote:
>
> > If the eyes are aligned in a central position, I don't see spending
> > $7000 to possibly gain small additional lateral movement or preventing
> > a head turn in the future. I honestly think it's too early for VRT to
> > be recommended to "possibly" prevent a head turn in the future...
> > Maybe in 10 years when we can see what long-term outcomes on the
> > younger patients actually are.
> >
> > Wouldn't Dr. R classify a Duane's patient with eyes aligned in the
> > central position as cosmetic surgery?
> >
> > --- In duanes@yahoogroups.com, "Christoph J. Gartmann" <gartmann@>
> > wrote:
> > >
> > > "coreywoolhouse" <coreywoolhouse@> wrote:
> > >
> > > >I think to say most ophthalmologists wouldn't have seen a
> > patient with
> > > >it's symptoms is a bit out there unless they're freshly out of
> > school.
> > >
> > > The problem is, whether they correctly identify it as Duanes. There
> > are quite
> > > a few ophthalmologists that simply think it is just another case
> > of the
> > > standard strabismus.
> > >
> > > >Why perform surgery on a condition that doesn't need it and
> > might only
> > > >complicate it further? I'm sure they'll need it at a later stage,
> > anyway
> > > >but why not wait til then.
> > >
> > > This might be true for MRR, but with VRT you have the option of
> > gaining lateral
> > > movement. This is more likely, the younger the child is. In addition
> > it will
> > > prevent development of a head-turn. Thus, why wait until there
> > are real
> > > problems, if the problems can be avoided by a small outpatient
> > surgery?
> > >
> > > Regards,
> > > Christoph Gartmann
> > >
> >
> >
> >
>

If the eyes are aligned in a central position, I don't see spending
$7000 to possibly gain small additional lateral movement or preventing
a head turn in the future. I honestly think it's too early for VRT to
be recommended to "possibly" prevent a head turn in the future...
Maybe in 10 years when we can see what long-term outcomes on the
younger patients actually are.

Wouldn't Dr. R classify a Duane's patient with eyes aligned in the
central position as cosmetic surgery?

--- In duanes@yahoogroups.com, "Christoph J. Gartmann" <gartmann@...>
wrote:
>
> "coreywoolhouse" <coreywoolhouse@...> wrote:
>
> >I think to say most ophthalmologists wouldn't have seen a patient with
> >it's symptoms is a bit out there unless they're freshly out of school.
>
> The problem is, whether they correctly identify it as Duanes. There
are quite
> a few ophthalmologists that simply think it is just another case of the
> standard strabismus.
>
> >Why perform surgery on a condition that doesn't need it and might only
> >complicate it further? I'm sure they'll need it at a later stage,
anyway
> >but why not wait til then.
>
> This might be true for MRR, but with VRT you have the option of
gaining lateral
> movement. This is more likely, the younger the child is. In addition
it will
> prevent development of a head-turn. Thus, why wait until there are real
> problems, if the problems can be avoided by a small outpatient surgery?
>
> Regards,
>    Christoph Gartmann
>

"coreywoolhouse" <coreywoolhouse@...> wrote:

>I think to say most ophthalmologists wouldn't have seen a patient with
>it's symptoms is a bit out there unless they're freshly out of school.

The problem is, whether they correctly identify it as Duanes. There are quite
a few ophthalmologists that simply think it is just another case of the
standard strabismus.

>Why perform surgery on a condition that doesn't need it and might only
>complicate it further? I'm sure they'll need it at a later stage, anyway
>but why not wait til then.

This might be true for MRR, but with VRT you have the option of gaining lateral
movement. This is more likely, the younger the child is. In addition it will
prevent development of a head-turn. Thus, why wait until there are real
problems, if the problems can be avoided by a small outpatient surgery?

Regards,
    Christoph Gartmann

I think your statements about ophthalmologists is true but also wrong.
A lot don't know much about Duane's, but from my experience - I went
to four. The first two were plain ophthalmologists - and while they
knew of the condition, neither thought it was treatable. After
checking this group, I went to two paediatrics's ophthalmologists and
BOTH knew about the conditions, and viable treatments for it.
Paediatrics ophthalmologists seem to get training in strabmisus while
other ophthalmologists seem to focus on more "adult" conditions. I
think to say most ophthalmologists wouldn't have seen a patient with
it's symptoms is a bit out there unless they're freshly out of school.
I mean, Duane's Syndrome shares symptoms with quite a number of
strabmisus conditions and I highly doubt an ophthalmologist would go a
day without seeing someone with strabmisus.

I think the main thing parents need to know Selena is, unless the eyes
are not aligned in a central position when looking forward - there is
no real reason to get surgery. Why perform surgery on a condition that
doesn't need it and might only complicate it further? I'm sure they'll
need it at a later stage, anyway but why not wait til then.

--- In duanes@yahoogroups.com, tbrown9163@... wrote:
>
> Selena:
>
> I am 49 with type I Duanes.
>
> I would say that many ophthalmologists don't know about Duane's and
have not formally seen a patient with its symptoms.   I also think
that it depends much on the severity of the cause.   There are several
classifications of Duane's that have been put into 'types' that,  I
believe,  have a great bearing on what the symptoms are.  In some
ways,  it could be that Duane's is not just one syndrome but several
from one viewpoint.
>
> It might seem impulsive to get something 'fixed'  right away by
surgery,  and perhaps that is the end result,  but it maybe isn't.
>
> What I would do is seek a truly informed specialist  (I've heard
there is one in the LA CA area) and seek his/her advice.  My advice
would be to make an informed and educated decision as possible.
>
> There is an old saying amongst physicians....there is not a problem
than cannot be made worse through surgery.    I would say like love,
  to look twice or three time and then jump but not before.
>
> My .02c  (which is becoming of less worth on the world market every day)
>
> --
> Thomas M. Brown
> "Maximizing Business by Minimizing Surprises"
> ~~~~~~~_/) ~ _/)~~~~~~
>
>  -------------- Original message ----------------------
> From: Selena Barajas <msselena05@...>
> > I am at kaiser baldwin park, i asked my sons pediatrician today
for a referral
> > and she said the only place she can refer me to is kaiser sunset
or i can
> > request a referral through member services.&nbsp; i was so
upset.&nbsp; im going
> > to go through with the assessment and just put the surgery on a
credit card and
> > pay it off fast.&nbsp; i dont even know who the po is they changed
it twice so
> > when i wrote in and complained thats one of the things that i was
po'd
> > about.&nbsp; thanks for the info..
> >
> > --- On Tue, 6/3/08, Liane Herbst liane@... wrote:
> >
> > From: Liane Herbst liane@...
> > Subject: Re: [duane's] new to the group
> > To: duanes@yahoogroups.com
> > Date: Tuesday, June 3, 2008, 9:17 PM
> >
> >
> >
> >
> >
> >
> >
> > I am with Kaiser and they refused to give a referral.&nbsp; We
went ahead with
> > Dr. R. and had 2 surgeries with him, since no one at Kaiser had
any experience
> > with VRT in infants at that time (6 years ago).&nbsp; We then
appealed their
> > decision to not refer us and were turned down.
> >
> > Still, even though we paid a lot of money, we are very very glad
we made the
> > decision we did.
> > &nbsp;
> > (Can you change insurers at any point? If you can, then you could
do that and
> > then have any necessary surgery done.&nbsp; Based on the timing of
my son's
> > surgery. that wasn't a decision we wanted to make, but maybe it
would work for
> > you.)
> > &nbsp;
> > Which Kaiser are you with? Which PO do you see?
> > &nbsp;
> > -- Liane
> >
> > ----- Original Message -----
> > From: msselena05
> > To: duanes@yahoogroups. com
> > Sent: Tuesday, June 03, 2008 8:14 PM
> > Subject: [duane's] new to the group
> >
> >
> >
> > HI
> >
> > my son was diagnosed with duane's syndrome when he was about 8 months
> > old. weve seen a pediatric ophtamologist twice, they first had us put
> > a patch on him which he would pull off then now they have us put
drops
> > in his good eye to make the other one work harder.
> >
> > initally they told us they wanted us to have surgery after he
turned 1,
> > then now they said when hes about 3 or 4. he is now 16 months old
> >
> > today i scheduled an appt with dr. rosenbaum at ucla since i am in
los
> > angeles. they told me that the price for the inital visit was between
> > 475 and 875.
> >
> > i currently have kaiser and was wondering if anyone has ever gotten a
> > referral to dr. rosenbaum from kaiser and what was that process.
was it
> > difficult to get. thanks
> >
> > heres to hoping for the best.
> > selena
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
>

Selena:

I am 49 with type I Duanes.

I would say that many ophthalmologists don't know about Duane's and have not
formally seen a patient with its symptoms.   I also think that it depends much
on the severity of the cause.   There are several classifications of Duane's
that have been put into 'types' that,  I believe,  have a great bearing on what
the symptoms are.  In some ways,  it could be that Duane's is not just one
syndrome but several from one viewpoint.

It might seem impulsive to get something 'fixed'  right away by surgery,  and
perhaps that is the end result,  but it maybe isn't.

What I would do is seek a truly informed specialist  (I've heard there is one in
the LA CA area) and seek his/her advice.  My advice would be to make an informed
and educated decision as possible.

There is an old saying amongst physicians....there is not a problem than cannot
be made worse through surgery.    I would say like love,   to look twice or
three time and then jump but not before.

My .02c  (which is becoming of less worth on the world market every day)

--
Thomas M. Brown
"Maximizing Business by Minimizing Surprises"
~~~~~~~_/) ~ _/)~~~~~~

  -------------- Original message ----------------------
From: Selena Barajas <msselena05@...>
> I am at kaiser baldwin park, i asked my sons pediatrician today for a referral
> and she said the only place she can refer me to is kaiser sunset or i can
> request a referral through member services.&nbsp; i was so upset.&nbsp; im
going
> to go through with the assessment and just put the surgery on a credit card
and
> pay it off fast.&nbsp; i dont even know who the po is they changed it twice so
> when i wrote in and complained thats one of the things that i was po'd
> about.&nbsp; thanks for the info..
>
> --- On Tue, 6/3/08, Liane Herbst &lt;liane@...&gt; wrote:
>
> From: Liane Herbst &lt;liane@...&gt;
> Subject: Re: [duane's] new to the group
> To: duanes@yahoogroups.com
> Date: Tuesday, June 3, 2008, 9:17 PM
>
>
>
>
>
>
>
> I am with Kaiser and they refused to give a referral.&nbsp; We went ahead with
> Dr. R. and had 2 surgeries with him, since no one at Kaiser had any experience
> with VRT in infants at that time (6 years ago).&nbsp; We then appealed their
> decision to not refer us and were turned down.
>
> Still, even though we paid a lot of money, we are very very glad we made the
> decision we did.
> &nbsp;
> (Can you change insurers at any point? If you can, then you could do that and
> then have any necessary surgery done.&nbsp; Based on the timing of my son's
> surgery. that wasn't a decision we wanted to make, but maybe it would work for
> you.)
> &nbsp;
> Which Kaiser are you with? Which PO do you see?
> &nbsp;
> -- Liane
>
> ----- Original Message -----
> From: msselena05
> To: duanes@yahoogroups. com
> Sent: Tuesday, June 03, 2008 8:14 PM
> Subject: [duane's] new to the group
>
>
>
> HI
>
> my son was diagnosed with duane's syndrome when he was about 8 months
> old. weve seen a pediatric ophtamologist twice, they first had us put
> a patch on him which he would pull off then now they have us put drops
> in his good eye to make the other one work harder.
>
> initally they told us they wanted us to have surgery after he turned 1,
> then now they said when hes about 3 or 4. he is now 16 months old
>
> today i scheduled an appt with dr. rosenbaum at ucla since i am in los
> angeles. they told me that the price for the inital visit was between
> 475 and 875.
>
> i currently have kaiser and was wondering if anyone has ever gotten a
> referral to dr. rosenbaum from kaiser and what was that process. was it
> difficult to get. thanks
>
> heres to hoping for the best.
> selena
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>
>

----- Original Message -----

From: msselena05

To: duanes@yahoogroups.com

Sent: Tuesday, June 03, 2008 8:14 PM

Subject: [duane's] new to the group

HI

my son was diagnosed with duane's syndrome when he was about 8 months
old. weve seen a pediatric ophtamologist twice, they first had us put
a patch on him which he would pull off then now they have us put drops
in his good eye to make the other one work harder.

initally they told us they wanted us to have surgery after he turned 1,
then now they said when hes about 3 or 4. he is now 16 months old

today i scheduled an appt with dr. rosenbaum at ucla since i am in los
angeles. they told me that the price for the inital visit was between
475 and 875.

i currently have kaiser and was wondering if anyone has ever gotten a
referral to dr. rosenbaum from kaiser and what was that process. was it
difficult to get. thanks

heres to hoping for the best.
selena

----- Original Message -----

From: coyleco10

To: duanes@yahoogroups.com

Sent: Tuesday, June 03, 2008 11:23 AM

Subject: Re: [duane's] Insurance company?

--- In duanes@yahoogroups.com, Christie Scharrer <christies963@...>
wrote:
>
> If anyone pays cash for an initial visit - let me know what it
costs.  They told me approx. $900, which seemed very high. 
>
> We paid cash in Jan. 08 and the initial visit was 590.00.
Colleen
>
> ----- Original Message ----
> From: Candice Forbes <candiforbes@...>
> To: duanes@yahoogroups.com
> Sent: Thursday, May 29, 2008 5:52:02 PM
> Subject: Re: [duane's] Insurance company?
>
>
> That is the total cost.  That is the amount that my insurance
company was billed.  You might call the office and verify the amount
as it has been a couple of years for several of us.
>
> Candi
>
> On May 29, 2008, at 6:25 PM, Tiffany wrote:
>
> Hi Liane,
> Is the cost of surgery approximately $6,400 or is that the amount
that wasn't covered by 
> insurance?
> Tiffany
>
> --- In duanes@yahoogroups. com, "Liane Herbst" <liane@> wrote:
> >
> > If your current insurance won't cover it, then you will probably
have to pay cash. Most 
> insurance companies will not cover a "pre-existing" condition, or
they will make you wait 6 
> months, 12 months, or longer before they cover you. And individual
policies (ie, not 
> covered by an employer) will require high premiums and high
deductibles. It is unlikely 
> that it will be cost-effective for you. (That's just my experience -
- others may have more 
> positive advice! I hope so).
> > 
> > I don't remember what an initial office visit costs. I think it
is between $350-450 US 
> dollars -- and that was a few years ago. The surgery used to be
(and I think still is) $6400 
> US -- this covers pre-op, operation, post-op, anesthesia and
hospital. It covers almost 
> everything. I think we had to pay for some very expensive eye drops
for the following 
> week, as well.
> > 
> > Good luck!
> > 
> > -- Liane
> > 
> > ----- Original Message ----- 
> > From: hmom76 
> > To: duanes@yahoogroups. com 
> > Sent: Tuesday, May 27, 2008 9:07 PM
> > Subject: [duane's] Insurance company?
> > 
> > 
> > Hi everyone,I am a Canadian citizen, I have a two year old
daughter 
> > who is Canadian as well. She has a Type One - Duane Syndrome, 
> > therefore I am in the middle of researching treatments and
operations 
> > for her.
> > 
> > I found out about the doctor Dr Rosenbaum at UCLA. and I booked
an 
> > appointment with him on July 7th, 2008.
> > 
> > I was wondering if anyone could please tell me how I could go
about 
> > applying for Insurance, as our Canadian health insurance won't
cover 
> > her expenses in the States.
> > 
> > please,I would like to know the following info please:
> > 
> > 1- How soon should I apply for insurance?
> > 
> > 2- What kind of coverage would I need in this situation (research 
> > or operation or doctor visitation.etc?
> > 
> > 3- Anybody has a previous experience with a similar case, I would 
> > love some tips please.
> > 
> > Your help is greatly appreciated, 
> > 
> > Hanaa
> >
>

HI

my son was diagnosed with duane's syndrome when he was about 8 months
old.  weve seen a pediatric ophtamologist twice, they first had us put
a patch on him which he would pull off then now they have us put drops
in his good eye to make the other one work harder.

initally they told us they wanted us to have surgery after he turned 1,
then now they said when hes about 3 or 4. he is now 16 months old

today i scheduled an appt with dr. rosenbaum at ucla since i am in los
angeles.  they told me that the price for the inital visit was between
475 and 875.

i currently have kaiser and was wondering if anyone has ever gotten a
referral to dr. rosenbaum from kaiser and what was that process. was it
difficult to get.  thanks

heres to hoping for the best.
selena

I created this cool friends network and added you to my friends network. Hit-up
now:
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--- In duanes@yahoogroups.com, Christie Scharrer <christies963@...>
wrote:
>
> If anyone pays cash for an initial visit - let me know what it
costs.  They told me approx. $900, which seemed very high. 
>
> We paid cash in Jan. 08 and the initial visit was 590.00.
Colleen
>
> ----- Original Message ----
> From: Candice Forbes <candiforbes@...>
> To: duanes@yahoogroups.com
> Sent: Thursday, May 29, 2008 5:52:02 PM
> Subject: Re: [duane's] Insurance company?
>
>
> That is the total cost.  That is the amount that my insurance
company was billed.  You might call the office and verify the amount
as it has been a couple of years for several of us.
>
> Candi
>
> On May 29, 2008, at 6:25 PM, Tiffany wrote:
>
> Hi Liane,
> Is the cost of surgery approximately $6,400 or is that the amount
that wasn't covered by 
> insurance?
> Tiffany
>
> --- In duanes@yahoogroups. com, "Liane Herbst" <liane@> wrote:
> >
> > If your current insurance won't cover it, then you will probably
have to pay cash. Most 
> insurance companies will not cover a "pre-existing" condition, or
they will make you wait 6 
> months, 12 months, or longer before they cover you. And individual
policies (ie, not 
> covered by an employer) will require high premiums and high
deductibles. It is unlikely 
> that it will be cost-effective for you. (That's just my experience -
- others may have more 
> positive advice! I hope so).
> > 
> > I don't remember what an initial office visit costs. I think it
is between $350-450 US 
> dollars -- and that was a few years ago. The surgery used to be
(and I think still is) $6400 
> US -- this covers pre-op, operation, post-op, anesthesia and
hospital. It covers almost 
> everything. I think we had to pay for some very expensive eye drops
for the following 
> week, as well.
> > 
> > Good luck!
> > 
> > -- Liane
> > 
> > ----- Original Message ----- 
> > From: hmom76 
> > To: duanes@yahoogroups. com 
> > Sent: Tuesday, May 27, 2008 9:07 PM
> > Subject: [duane's] Insurance company?
> > 
> > 
> > Hi everyone,I am a Canadian citizen, I have a two year old
daughter 
> > who is Canadian as well. She has a Type One - Duane Syndrome, 
> > therefore I am in the middle of researching treatments and
operations 
> > for her.
> > 
> > I found out about the doctor Dr Rosenbaum at UCLA. and I booked
an 
> > appointment with him on July 7th, 2008.
> > 
> > I was wondering if anyone could please tell me how I could go
about 
> > applying for Insurance, as our Canadian health insurance won't
cover 
> > her expenses in the States.
> > 
> > please,I would like to know the following info please:
> > 
> > 1- How soon should I apply for insurance?
> > 
> > 2- What kind of coverage would I need in this situation (research 
> > or operation or doctor visitation.etc?
> > 
> > 3- Anybody has a previous experience with a similar case, I would 
> > love some tips please.
> > 
> > Your help is greatly appreciated, 
> > 
> > Hanaa
> >
>

On Sun, 1 Jun 2008 22:26:55 -0700 (PDT) Christie Scharrer
<christies963@...> wrote:
>I have spoken to Grace at Dr. R's office about this price several
>times...although as previously posted, it seemed like she was giving
>me the runaround and wanted to get off the phone -

Send an e-mail to Dr. Rosenbaum. The phones in his office are ringing
all the time, there are plenty of people coming in and out all the
time, so I am not surprised that you get varying answers. Dr. Rosenbaum
will forward your e-mail to Cassandra who seems to be the most
knowledgable person if it comes to the financial stuff. In addition, an
e-mail gives them the option of answering it when there is time and no
pressure.

Regards,
    Christoph Gartmann