Re: slings and eye surgery

[Guest guest]

Hi ,

is a cutie! You can go and see my son under

" Eisele Family " in the photos section. His first

picture is when he was 21 months so not much older

than . Then you can see him 3 mos and 1 yr after

his surgery. He had a YV Canthoplasty (to widen the

eye openings) and the frontalis slings done at the

same time. (Just the way his doctor did it.) He used

to tilt WAY back to see before his surgery.

It is scary anytime our kiddos have to have surgery.

But for Micah I can definitely say it was worth it and

greatly improved his quality of life. Good luck to

all of you.

April

Colorado, USA

--- rrippee77 <rrippee77@...> wrote:

> hi all,

> I don't write too much because I haven't really had

> any thing to write

> about-- I mostly gather info from all of you. But,

> today I have a

> question to the group, and need feedback from

> whoever can help me. My

> nephew has BPES,(he will be 3 in Nov.) and my

> sister has just

> been told that will need eye surgery, with

> slings and all. My

> sister is kind of in denial-- she doesn't admit that

> YES, he DOES lift

> his head back a little to see things in front of

> him,and I think she is

> just afraid of having the surgery done on him. She

> has seen some of the

> pics on this site, and it has kinda scared her. If

> everyone would

> PLEASE look at ' photo that I've posted (it was

> taken when he was

> 18mo.)and tell me any encouraging words about the

> surgery, or reccomend

> a Dr. in San Diego, CA (thats where we live)so I

> could ease my sisters

> fears, I would really appreciate any input. Thank

> you so much! ,

> in CA.

>

>

________________________________________________________________________________\

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[Guest guest]

HI MY NAME IS WHITNEY. BLEPHAROPHIMOSIS AFFECTS MULITIPLE PEOPLE IN MY

FAMILY. I AM FROM NC AND WAS WONDERING IF ANYONE HAD ANY EXPERIENCE WITH ANY

DOCTORS IN NC. I HAD THE Z PROCEDURE TO HELP THE WIDEING OF MY EYES AND IT

HELPED SOME, BUT REALLY WOULD LIKE TO HAVE THE FRONTALIS SLING, BUT

INSURANCE DOESN'T WANT TO PAY FOR THAT. ANY ADVICE??? THE DOCTOR THAT DID MY

PROCEDURE DIDN'T EVEN KNOW THE CORRECT NAME HE CALLED IT BLEPHRAPTOSIS I

REALLY WANT TO FIND A DOCTOR WITH EXPERIENCE. PLEASE HELP

>From: april Eisele <aprileisele@...>

>Reply-blepharophimosis

>blepharophimosis

>Subject: Re: blepharophimosis slings and eye surgery

>Date: Wed, 6 Jun 2007 08:22:31 -0700 (PDT)

>

>Hi ,

>

> is a cutie! You can go and see my son under

> " Eisele Family " in the photos section. His first

>picture is when he was 21 months so not much older

>than . Then you can see him 3 mos and 1 yr after

>his surgery. He had a YV Canthoplasty (to widen the

>eye openings) and the frontalis slings done at the

>same time. (Just the way his doctor did it.) He used

>to tilt WAY back to see before his surgery.

>

>It is scary anytime our kiddos have to have surgery.

>But for Micah I can definitely say it was worth it and

>greatly improved his quality of life. Good luck to

>all of you.

>

>April

>Colorado, USA

>

>

>--- rrippee77 <rrippee77@...> wrote:

>

> > hi all,

> > I don't write too much because I haven't really had

> > any thing to write

> > about-- I mostly gather info from all of you. But,

> > today I have a

> > question to the group, and need feedback from

> > whoever can help me. My

> > nephew has BPES,(he will be 3 in Nov.) and my

> > sister has just

> > been told that will need eye surgery, with

> > slings and all. My

> > sister is kind of in denial-- she doesn't admit that

> > YES, he DOES lift

> > his head back a little to see things in front of

> > him,and I think she is

> > just afraid of having the surgery done on him. She

> > has seen some of the

> > pics on this site, and it has kinda scared her. If

> > everyone would

> > PLEASE look at ' photo that I've posted (it was

> > taken when he was

> > 18mo.)and tell me any encouraging words about the

> > surgery, or reccomend

> > a Dr. in San Diego, CA (thats where we live)so I

> > could ease my sisters

> > fears, I would really appreciate any input. Thank

> > you so much! ,

> > in CA.

> >

> >

>

>

>

>

>_______________________________________________________________________________\

_____

>Bored stiff? Loosen up...

>Download and play hundreds of games for free on Games.

>http://games./games/front

_________________________________________________________________

Make every IM count. Download Messenger and join the i’m Initiative now.

It’s free. http://im.live.com/messenger/im/home/?source=TAGHM_June07

[Guest guest]

Dear Whitney

I am sorry to hear that your health insurance is not able to provide you

with the funding.

I wanted to let you know that I don't think that your doctor has made a

mistake with the terminology. I asked my doctor about terms they use ... and

if my memory is right ... he explained that some of the terms mean almost

the same thing and are used as alternatives. (in other words, some people

use the term " ptosis " , and some people use the term " blepharoptosis " in

connection with BPES).

Taking a look at the Medline dictionary, is says that

blepharoptosis = a drooping or abnormal relaxation of the upper eyelid

and

ptosis = a sagging or prolapse of an organ or part <renal ptosis>;

especially : a drooping of the upper eyelid (as from paralysis of the

oculomotor nerve)

So this seems to support what my doctor told me.

To put your mind at rest, you could ask your doctor:

" Do I have BPES? "

BPES stands for Blepharophimosis Ptosis Epicanthus Inversus Syndrome

And sometimes it is known as BPEI. Sorry if you know all this already.

It is worth pointing out that lots of people refer to BPES as just " Bleph "

or " Blepharophimosis " . I think that this is misleading and should be

avoided. Having said that - some people only have some of the

characteristics of BPES, in which case it is possible that they have

something similar to BPES, but not exactly the same thing.

You may like to take a look here:

http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 &

key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html

And scroll down to the part called " Differential Diagnosis " . (or you can

click on the link on the left hand side of the site). By the way - you will

see in this section both " ptosis " and " blepharoptosis " . This was exactly the

reason I asked my doctor to explain the difference.... it puzzled me ... and

as I said - they both pretty much mean the same thing within the context of

BPES.

I hope that one of the USA members of this group will help you with how to

persuade your insurance company to pay for the treatment you want. I can't

help you on that front as I live in England, and am not familiar with USA

insurance.

Take care

Shireen

London, England

Am the only person in my family with BPES.

Re: blepharophimosis slings and eye surgery

>Date: Wed, 6 Jun 2007 08:22:31 -0700 (PDT)

>

>Hi ,

>

> is a cutie! You can go and see my son under

> " Eisele Family " in the photos section. His first

>picture is when he was 21 months so not much older

>than . Then you can see him 3 mos and 1 yr after

>his surgery. He had a YV Canthoplasty (to widen the

>eye openings) and the frontalis slings done at the

>same time. (Just the way his doctor did it.) He used

>to tilt WAY back to see before his surgery.

>

>It is scary anytime our kiddos have to have surgery.

>But for Micah I can definitely say it was worth it and

>greatly improved his quality of life. Good luck to

>all of you.

>

>April

>Colorado, USA

>

>

>--- rrippee77 <rrippee77@...> wrote:

>

> > hi all,

> > I don't write too much because I haven't really had

> > any thing to write

> > about-- I mostly gather info from all of you. But,

> > today I have a

> > question to the group, and need feedback from

> > whoever can help me. My

> > nephew has BPES,(he will be 3 in Nov.) and my

> > sister has just

> > been told that will need eye surgery, with

> > slings and all. My

> > sister is kind of in denial-- she doesn't admit that

> > YES, he DOES lift

> > his head back a little to see things in front of

> > him,and I think she is

> > just afraid of having the surgery done on him. She

> > has seen some of the

> > pics on this site, and it has kinda scared her. If

> > everyone would

> > PLEASE look at ' photo that I've posted (it was

> > taken when he was

> > 18mo.)and tell me any encouraging words about the

> > surgery, or reccomend

> > a Dr. in San Diego, CA (thats where we live)so I

> > could ease my sisters

> > fears, I would really appreciate any input. Thank

> > you so much! ,

> > in CA.

> >

> >

>

>

>

>

>___________________________________________________________________________

_________

>Bored stiff? Loosen up...

>Download and play hundreds of games for free on Games.

>http://games./games/front

_________________________________________________________________

Make every IM count. Download Messenger and join the i'm Initiative now.

It's free. http://im.live.com/messenger/im/home/?source=TAGHM_June07

[Guest guest]

Whitney

I am not an expert in these things but I do know that insurance

companies can be very difficult when you have something they don't

understand. Especially because lots of people get " blepharophasty "

for cosmetic reasons. But this is a medical condition and I think if

you find a doctor knowledgeable and whom you are comfortable with,

they may be able to help you with your insurance. Good luck with this

and keep trying!

There are other people on this board who live in NC, and I live in VA

and my daughter goes to Dr. Gavaris at Children's in DC, I think Tony

mentioned him in a previous email. He is wonderful and his staff is

very professional helpful also.

> >

> > > hi all,

> > > I don't write too much because I haven't really had

> > > any thing to write

> > > about-- I mostly gather info from all of you. But,

> > > today I have a

> > > question to the group, and need feedback from

> > > whoever can help me. My

> > > nephew has BPES,(he will be 3 in Nov.) and my

> > > sister has just

> > > been told that will need eye surgery, with

> > > slings and all. My

> > > sister is kind of in denial-- she doesn't admit that

> > > YES, he DOES lift

> > > his head back a little to see things in front of

> > > him,and I think she is

> > > just afraid of having the surgery done on him. She

> > > has seen some of the

> > > pics on this site, and it has kinda scared her. If

> > > everyone would

> > > PLEASE look at ' photo that I've posted (it was

> > > taken when he was

> > > 18mo.)and tell me any encouraging words about the

> > > surgery, or reccomend

> > > a Dr. in San Diego, CA (thats where we live)so I

> > > could ease my sisters

> > > fears, I would really appreciate any input. Thank

> > > you so much! ,

> > > in CA.

> > >

> > >

> >

> >

> >

> >

>

>_____________________________________________________________________

______

> _________

> >Bored stiff? Loosen up...

> >Download and play hundreds of games for free on Games.

> >http://games./games/front

>

> _________________________________________________________________

> Make every IM count. Download Messenger and join the i'm Initiative

now.

> It's free. http://im.live.com/messenger/im/home/?source=TAGHM_June07

>

>

>

>

[Guest guest]

[mailto:blepharophimosis ] On Behalf Of Whitney

> > Sent: 06 June 2007 22:09

> > blepharophimosis

> > Subject: Re: blepharophimosis slings and eye surgery

> BUT REALLY WOULD LIKE TO HAVE THE FRONTALIS SLING, BUT INSURANCE

DOESN'T WANT TO PAY FOR THAT.

If you have a university hospital near you (like perhaps Duke), you

should contact the Ophthalmology department and ask if they have

anyone on staff who has experience with this condition. If so, ask

to make an appointment with them! Generally doctors at university

hospitals have agreements with insurance companies so that they are

considered " in network " even if they aren't. If not, it still might

be worth paying for the initial visit to get an accurate diagnosis.

Even with a diagnosis, the insurance company is not going to pay for

the procedure unless the doctor states that is it a medically

necessary procedure and not just cosmetic. So, if you just want the

surgery to look better, they are not going to pay. However, if you

doctor explains that the ptosis is causing damage to your vision

then they have no excuse not to pay for it. The most important

thing is that the doctor explains the medical NEED for this surgery

since a lot of people do have it done for cosmetic reasons. My

daughter had to go through the whole insurance review process to

determine eligibility even though she is only 22 months old! I did

ask the insurance evaluator if there was a big problem with people

getting unnecessary plastic surgery for toddlers!

Good luck. I hope you find a doctor who can help you get the

surgery you need!

Donna

[Guest guest]

I got a chuckle out of that, yes so many vanity consumed toddlers out

there these days!

We had several fears with the insurance company and it wasn't fun on

the phone with them over and over but in the end it worked out.

--- In blepharophimosis , " donnat65 " <donnat65@...>

wrote:

>

> [mailto:blepharophimosis ] On Behalf Of Whitney

> > > Sent: 06 June 2007 22:09

> > > blepharophimosis

> > > Subject: Re: blepharophimosis slings and eye surgery

> > BUT REALLY WOULD LIKE TO HAVE THE FRONTALIS SLING, BUT INSURANCE

> DOESN'T WANT TO PAY FOR THAT.

>

>

> If you have a university hospital near you (like perhaps Duke), you

> should contact the Ophthalmology department and ask if they have

> anyone on staff who has experience with this condition. If so, ask

> to make an appointment with them! Generally doctors at university

> hospitals have agreements with insurance companies so that they are

> considered " in network " even if they aren't. If not, it still

might

> be worth paying for the initial visit to get an accurate diagnosis.

>

> Even with a diagnosis, the insurance company is not going to pay

for

> the procedure unless the doctor states that is it a medically

> necessary procedure and not just cosmetic. So, if you just want

the

> surgery to look better, they are not going to pay. However, if you

> doctor explains that the ptosis is causing damage to your vision

> then they have no excuse not to pay for it. The most important

> thing is that the doctor explains the medical NEED for this surgery

> since a lot of people do have it done for cosmetic reasons. My

> daughter had to go through the whole insurance review process to

> determine eligibility even though she is only 22 months old! I did

> ask the insurance evaluator if there was a big problem with people

> getting unnecessary plastic surgery for toddlers!

>

> Good luck. I hope you find a doctor who can help you get the

> surgery you need!

>

> Donna

>