Re: FW: Trying to join group...

[Guest guest]

My grandson is supposed to have surgery in Houston, Texas later this month. We were not aware of any doctors in San . How old is your daughter? It is usually the sling surgery first, but circumstances are different with each case.

The problem we are having is my son's insurance company is trying to refuse the surgery and saying it is only cosmetic. We are prepared to go to the state insurance board, if necessary. Has your insurance given you any trouble about covering the procedure??

Has anyone else had troubles with insurance?? Shireen has anyone else had to deal with this lack of knowledge and understanding of this condition??

Grandma Aggie (Janel)

Trying to join group...

I am trying to join the group Blepharophimosis and have been waiting a few days now for a response. Both of my daughters and my husband have BPES and we are currently at the point were our daughter has to undergo surgery and I would be really grateful to be accepted into the group. Is there any way to expedite the process of being added to the group?

Hayley

[Guest guest]

Hayley,

I completely understand the want of just being anxious to get the surgery over with, but I truly believe that you need to have complete faith in your surgeon as well. I know that it is hard enough to give our children over for surgery and I can't even begin to imagine still having questions at that time. I know surgeons and doctors are very busy and have alot of patients, but you are talking about having facial surgery. If your doctor can't make time for you before the surgery is he going to be able to be there if you have questions after the fact? Our youngest son had to have surgery at 6 1/2 weeks and we couldn't have been more nervous. His surgeon was really able to ease all of our fears and made sure that we understood the process and didn't have any questions left. I don't know how old your little girl is, but regardless it is a big decision. We did pass up surgeons because they were to busy to see us even though they were

in our area. Now we travel about 5 hours to his doctors in Miami and I couldn't be happier with our decision. The traveling is hard sometimes, but we are always treated like we are the most important patient and that makes this whole process just a little less scary and well worth it. Good luck - it's not an easy decision either way!

Heidi

Clearwater, FL

Mom to - 8 months

From: Shireen Mohandes <shireen@...>blepharophimosis Sent: Wed, August 4, 2010 5:25:27 PMSubject: blepharophimosis FW: Trying to join group...

Dear all

This is from Hayley. Please read it from the bottom up (so to speak).

She is keen for to hear a reply from us.

Shireen

London, England

From: Hayley Desbien [mailto:hdesbien@ hotmail.com] Sent: 04 August 2010 22:13shireenhartsdale (DOT) co.ukSubject: RE: Trying to join group...

Thank you so much, Shireen! I am so grateful to have made contact with someone who can possibly help me get into the group. I am anxious to look at posts and pictures and get advice. We are feeling apprehensive about our daughter's surgery (Aug 24th) since there are some discrepancies with the Dr. She has to have two operations done. The frontalis sling and the epicanthal fold operation. The Dr said it is not an option to have both operations done at the same time. However, when we were scheduled for the surgery they told us both operations would be at the same time. They also originally said she'd need to stay away from pools for 4-6 weeks and now they are saying only 1 week. So, we wanted to check with the Dr himself to see why all the information keeps changing. The office keeps telling us there is no way to talk to him since he is so busy and

that scheduling an appointment at this time isn't possible since the surgery is so soon. Shouldn't we be able to at least talk to him to clear things up? We are tempted to cancel and pursue another surgeon. The only problem is that there are only two Dr's in San that can do this operation. Looks like we might have to look outside of San .Sorry to ramble!Hayley

From: shireenhartsdale (DOT) co.ukhdesbienhotmail (DOT) comCC: healthsharegroups@ live.comSubject: RE: Trying to join group...Date: Wed, 4 Aug 2010 22:02:36 +0100

Hi Hayley

Thanks for writing. I am not sure why you cannot join. I have copied in (the person who set up the Group) to see if he can assist.

I hope that either or myself can reply to you soonest. In the meantime, please send me your post and I can post it on your behalf. I am sure that the members would like to reply to you.

Regards

Shireen Mohandes

London, England

From: blepharophimosis- owner@group s.com [mailto:blepharophi mosis-owner] On Behalf Of Hayley DesbienSent: 04 August 2010 21:57blepharophimosis- subscribe; blepharophimosis- owner@group s.com; blepharophimosisSubject: Trying to join group...

I am trying to join the group Blepharophimosis and have been waiting a few days now for a response. Both of my daughters and my husband have BPES and we are currently at the point were our daughter has to undergo surgery and I would be really grateful to be accepted into the group. Is there any way to expedite the process of being added to the group?Hayley

[Guest guest]

I can get with my daughter-in-law and she can get the address of his office, etc, but his name is Dr. Hyde. His office is in downtown Houston.

In a message dated 8/5/2010 4:57:10 P.M. Central Daylight Time, hdesbien@... writes:

What is the name of the surgeon? We are trying to find someone in Houston even though it will be quite a trip with our three kids! Worth it, though, if we can find a great surgeon!!! Allie (5 years old) was all set for an operation this month. But we have since canceled since they wouldn't even schedule us for another appointment before the surgery to answer our questions. We also have another precious daughter, Carson (17 weeks old) who also has BPES.We haven't had any issues with insurance so far. I am not sure how we go about finding out if it's covered. I figured the Dr's office would take care of that. >> > My grandson is supposed to have surgery in Houston, Texas later this month. We were not aware of any doctors in San . How old is your daughter? It is usually the sling surgery first, but circumstances are different with each case.> > > The problem we are having is my son's insurance company is trying to refuse the surgery and saying it is only cosmetic. We are prepared to go to the state insurance board, if necessary. Has your insurance given you any trouble about covering the procedure??> > Has anyone else had troubles with insurance?? Shireen has anyone else had to deal with this lack of knowledge and understanding of this condition??> > Grandma Aggie (Janel)> > > > > > > Trying to join group...> > > I am trying to join the group Blepharophimosis and have been waiting a few days now for a response. Both of my daughters and my husband have BPES and we are currently at the point were our daughter has to undergo surgery and I would be really grateful to be accepted into the group. Is there any way to expedite the process of being added to the group?> Hayley>

[Guest guest]

Where are y'all located? Janel

In a message dated 8/5/2010 4:57:10 P.M. Central Daylight Time, hdesbien@... writes:

What is the name of the surgeon? We are trying to find someone in Houston even though it will be quite a trip with our three kids! Worth it, though, if we can find a great surgeon!!! Allie (5 years old) was all set for an operation this month. But we have since canceled since they wouldn't even schedule us for another appointment before the surgery to answer our questions. We also have another precious daughter, Carson (17 weeks old) who also has BPES.We haven't had any issues with insurance so far. I am not sure how we go about finding out if it's covered. I figured the Dr's office would take care of that. >> > My grandson is supposed to have surgery in Houston, Texas later this month. We were not aware of any doctors in San . How old is your daughter? It is usually the sling surgery first, but circumstances are different with each case.> > > The problem we are having is my son's insurance company is trying to refuse the surgery and saying it is only cosmetic. We are prepared to go to the state insurance board, if necessary. Has your insurance given you any trouble about covering the procedure??> > Has anyone else had troubles with insurance?? Shireen has anyone else had to deal with this lack of knowledge and understanding of this condition??> > Grandma Aggie (Janel)> > > > > > > Trying to join group...> > > I am trying to join the group Blepharophimosis and have been waiting a few days now for a response. Both of my daughters and my husband have BPES and we are currently at the point were our daughter has to undergo surgery and I would be really grateful to be accepted into the group. Is there any way to expedite the process of being added to the group?> Hayley>

[Guest guest]

Hi Hayley (shireen can you forward)

Every case is different wit BPES, I do know that me and my daughter had our ops with 6months between. I think if you are not 100% convinced you should continue to try to speak with your surgeon. I used to phone the hospital every morning until someone answered my query.

It must be difficult not knowing why they have changed their minds. At least if you get an answer to this, it will help you sort it in your mind.

Could you ask for an email address, or Shireen could Hayley email Mr Collin and ask his opinion?

Just some thoughts for you.

Me and my daughter have BPES, and have both had ops. mine at 14 my daughter at 4. In London.

Regards

Clare Teale Herts, UK

From: Shireen Mohandes <shireen@...>Subject: blepharophimosis FW: Trying to join group...blepharophimosis Date: Wednesday, 4 August, 2010, 22:25

Dear all

This is from Hayley. Please read it from the bottom up (so to speak).

She is keen for to hear a reply from us.

Shireen

London, England

From: Hayley Desbien [mailto:hdesbien@ hotmail.com] Sent: 04 August 2010 22:13shireenhartsdale (DOT) co.ukSubject: RE: Trying to join group...

Thank you so much, Shireen! I am so grateful to have made contact with someone who can possibly help me get into the group. I am anxious to look at posts and pictures and get advice. We are feeling apprehensive about our daughter's surgery (Aug 24th) since there are some discrepancies with the Dr. She has to have two operations done. The frontalis sling and the epicanthal fold operation. The Dr said it is not an option to have both operations done at the same time. However, when we were scheduled for the surgery they told us both operations would be at the same time. They also originally said she'd need to stay away from pools for 4-6 weeks and now they are saying only 1 week. So, we wanted to check with the Dr himself to see why all the information keeps changing. The office keeps telling us there is no way to talk to him since he is

so busy and that scheduling an appointment at this time isn't possible since the surgery is so soon. Shouldn't we be able to at least talk to him to clear things up? We are tempted to cancel and pursue another surgeon. The only problem is that there are only two Dr's in San that can do this operation. Looks like we might have to look outside of San .Sorry to ramble!Hayley

From: shireenhartsdale (DOT) co.ukhdesbienhotmail (DOT) comCC: healthsharegroups@ live.comSubject: RE: Trying to join group...Date: Wed, 4 Aug 2010 22:02:36 +0100

Hi Hayley

Thanks for writing. I am not sure why you cannot join. I have copied in (the person who set up the Group) to see if he can assist.

I hope that either or myself can reply to you soonest. In the meantime, please send me your post and I can post it on your behalf. I am sure that the members would like to reply to you.

Regards

Shireen Mohandes

London, England

From: blepharophimosis- owner@group s.com [mailto:blepharophi mosis-owner] On Behalf Of Hayley DesbienSent: 04 August 2010 21:57blepharophimosis- subscribe; blepharophimosis- owner@group s.com; blepharophimosisSubject: Trying to join group...

I am trying to join the group Blepharophimosis and have been waiting a few days now for a response. Both of my daughters and my husband have BPES and we are currently at the point were our daughter has to undergo surgery and I would be really grateful to be accepted into the group. Is there any way to expedite the process of being added to the group?Hayley

[Guest guest]

What is the name of the surgeon? We are trying to find someone in Houston even

though it will be quite a trip with our three kids! Worth it, though, if we can

find a great surgeon!!! Allie (5 years old) was all set for an operation this

month. But we have since canceled since they wouldn't even schedule us for

another appointment before the surgery to answer our questions. We also have

another precious daughter, Carson (17 weeks old) who also has BPES.

We haven't had any issues with insurance so far. I am not sure how we go about

finding out if it's covered. I figured the Dr's office would take care of that.

>

>

> My grandson is supposed to have surgery in Houston, Texas later this month.

We were not aware of any doctors in San . How old is your daughter? It

is usually the sling surgery first, but circumstances are different with each

case.

>

>

> The problem we are having is my son's insurance company is trying to refuse

the surgery and saying it is only cosmetic. We are prepared to go to the state

insurance board, if necessary. Has your insurance given you any trouble about

covering the procedure??

>

> Has anyone else had troubles with insurance?? Shireen has anyone else had to

deal with this lack of knowledge and understanding of this condition??

>

> Grandma Aggie (Janel)

>

>

>

>

>

>

> Trying to join group...

>

>

> I am trying to join the group Blepharophimosis and have been waiting a

few days now for a response. Both of my daughters and my husband have BPES and

we are currently at the point were our daughter has to undergo surgery and I

would be really grateful to be accepted into the group. Is there any way to

expedite the process of being added to the group?

> Hayley

>

[Guest guest]

Heidi,

I completely agree that you eventually have to trust the surgeon. I really

don't think I will have any problem with that once the questions and concerns

that we have are addressed. It just seemed that the office we were going

through didn't have time for anything. The lady who schedules the surgeries

said she was the one we had to talk to if we had questions. She pretty much

refused to set up another appointment for us with the Dr until my husband said

we would cancel the surgery. Then she " found " a spot for us four days before

the surgery at 3pm and told my hubby to be prepared to wait for 3-4 hours before

being seen. Really?!!! So we canceled everything with them and are taking our

precious daughter elsewhere. It's not worth it for me to trust people who don't

seem to care about our concerns or her well being. I feel it happened this way

for a reason and hopefully we're on a better path towards a really great

surgeon!!! We are totally willing to travel if we have to.

Hayley

--- In blepharophimosis , Heidi Dembowski <heididembowski@...>

wrote:

>

> Hayley,

> I completely understand the want of just being anxious to get the surgery over

> with, but I truly believe that you need to have complete faith in your surgeon

> as well. I know that it is hard enough to give our children over for surgery

and

> I can't even begin to imagine still having questions at that time. I know

> surgeons and doctors are very busy and have alot of patients, but you are

> talking about having facial surgery. If your doctor can't make time for you

> before the surgery is he going to be able to be there if you have questions

> after the fact? Our youngest son  had to have surgery at 6 1/2 weeks

and

> we couldn't have been more nervous. His surgeon was really able to ease all of

> our fears and made sure that we understood the process and didn't have any

> questions left. I don't know how old your little girl is, but regardless it is

a

> big decision. We did pass up surgeons because they were to busy to see us

even

> though they were in our area. Now we travel about 5 hours to his doctors in

> Miami and I couldn't be happier with our decision. The traveling is hard

> sometimes, but we are always treated like we are the most important patient

and

> that makes this whole process just a little less scary and well worth it. Good

> luck - it's not an easy decision either way!

> Heidi

> Clearwater, FL

> Mom to - 8 months

>

>

>

>

> ________________________________

> From: Shireen Mohandes <shireen@...>

> blepharophimosis

> Sent: Wed, August 4, 2010 5:25:27 PM

> Subject: blepharophimosis FW: Trying to join group...

>

>  

> Dear all

> This is from Hayley. Please read it from the bottom up (so to speak).

> She is keen for to hear a reply from us.

> Shireen

> London, England

>  

> From:Hayley Desbien [mailto:hdesbien@ hotmail.com]

> Sent: 04 August 2010 22:13

> shireenhartsdale (DOT) co.uk

> Subject: RE: Trying to join group...

>  

> Thank you so much, Shireen!  I am so grateful to have made contact with

someone

> who can possibly help me get into the group.  I am anxious to look at posts

and

> pictures and get advice.  We are feeling apprehensive about our daughter's

> surgery (Aug 24th) since there are some discrepancies with the Dr.  She has

to

> have two operations done.  The frontalis sling and the epicanthal fold

> operation.  The Dr said it is not an option to have both operations done at

the

> same time.  However, when we were scheduled for the surgery they told us both

> operations would be at the same time.  They also originally said she'd need

to

> stay away from pools for 4-6 weeks and now they are saying only 1 week.  So,

we

> wanted to check with the Dr himself to see why all the information keeps

> changing.  The office keeps telling us there is no way to talk to him since

he

> is so busy and that scheduling an appointment at this time isn't possible

since

> the surgery is so soon.  Shouldn't we be able to at least talk to him to

clear

> things up?  We are tempted to cancel and pursue another surgeon.  The only

> problem is that there are only two Dr's in San that can do this

> operation.  Looks like we might have to look outside of San .

> Sorry to ramble!

> Hayley

>

> ________________________________

>

> From: shireenhartsdale (DOT) co.uk

> hdesbienhotmail (DOT) com

> CC: healthsharegroups@ live.com

> Subject: RE: Trying to join group...

> Date: Wed, 4 Aug 2010 22:02:36 +0100

> Hi Hayley

> Thanks for writing.  I am not sure why you cannot join. I have copied in

> (the person who set up the Group) to see if he can assist.

> I hope that either or myself can reply to you soonest.  In the

meantime,

> please send me your post and I can post it on your behalf. I am sure that the

> members would like to reply to you.

> Regards

> Shireen Mohandes

> London, England

> From:blepharophimosis- owner@group s.com [mailto:blepharophi mosis-owner@

> groups. com] On Behalf Of Hayley Desbien

> Sent: 04 August 2010 21:57

> blepharophimosis- subscribe; blepharophimosis-

> owner@group s.com; blepharophimosis

> Subject: Trying to join group...

>  

> I am trying to join the group Blepharophimosis and have been waiting a

few

> days now for a response.  Both of my daughters and my husband have BPES and

we

> are currently at the point were our daughter has to undergo surgery and I

would

> be really grateful to be accepted into the group.  Is there any way to

expedite

> the process of being added to the group?

> Hayley

>

[Guest guest]



dear grandma aggie,

living in the netherlands we fortunately don't have problems with health-related-insurance companies in the way as you describe, so i can't give you an advice on the matter. all i can say is that the cosmetic part often plays a big role in the "well-feeling" and that can have an effect on the psychological condition. but if your son's insurance company compares a bpes surgery with a butt-lifting operation they definitely don't understand what they are talking about. i don't know the consequences of going to the state insurance board, but i believe there must be a lot of jurisprudentia (i think in the usa it's called case law) you can go for.

as our son (39 now) had "different eyes" nobody knew what it was. we went to several specialized hospitals in the netherlands but nobody ever mentioned bpes. by the time he was 9 (in 1979) we came in touch or must i say we discovered a plastic surgeon in rotterdam who operated him very well and untill now it's the one and only operation he had so it was succesfull. but even this professor in plastic surgery never mentioned bpes.

when our granddaughter was born (2004) we, as experienced experts, immediately noticed that she had her fathers eyes but as her mother is chinese, for the medical staff in hospital it was a bit more difficult to see what the condition really was. it was then when i found out about bpes.... after 6 hours surfing on the internet..... and as a consequence of that i discovered this mailgroup, giving me more info and... a lot of encouraging stories and pictures. this all supported us to take proper action to the medical side of the world. it gave me the knowledge to support mij son and granddaughter with facts and knowing about..... therefore we think mailgroups like these are giving a very good piece of support to people with bpess and their relatives.

i wish you and your son all the best for the struggle with the insurance company and maybee we can see a picture of your grandson in this mailinggroup?

grandfather dolph

(being not a native speaker please forgive my misstakes in english)

blepharophimosis FW: Trying to join group...

Dear all

This is from Hayley. Please read it from the bottom up (so to speak).

She is keen for to hear a reply from us.

Shireen

London, England

From: Hayley Desbien [mailto:hdesbienhotmail] Sent: 04 August 2010 22:13shireenhartsdale (DOT) co.ukSubject: RE: Trying to join group...

Thank you so much, Shireen! I am so grateful to have made contact with someone who can possibly help me get into the group. I am anxious to look at posts and pictures and get advice. We are feeling apprehensive about our daughter's surgery (Aug 24th) since there are some discrepancies with the Dr. She has to have two operations done. The frontalis sling and the epicanthal fold operation. The Dr said it is not an option to have both operations done at the same time. However, when we were scheduled for the surgery they told us both operations would be at the same time. They also originally said she'd need to stay away from pools for 4-6 weeks and now they are saying only 1 week. So, we wanted to check with the Dr himself to see why all the information keeps changing. The office keeps telling us there is no way to talk to him since he is so busy and that scheduling an appointment at this time isn't possible since the surgery is so soon. Shouldn't we be able to at least talk to him to clear things up? We are tempted to cancel and pursue another surgeon. The only problem is that there are only two Dr's in San that can do this operation. Looks like we might have to look outside of San .Sorry to ramble!Hayley

From: shireenhartsdale (DOT) co.ukTo: hdesbienhotmailCC: healthsharegroupsliveSubject: RE: Trying to join group...Date: Wed, 4 Aug 2010 22:02:36 +0100

Hi Hayley

Thanks for writing. I am not sure why you cannot join. I have copied in (the person who set up the Group) to see if he can assist.

I hope that either or myself can reply to you soonest. In the meantime, please send me your post and I can post it on your behalf. I am sure that the members would like to reply to you.

Regards

Shireen Mohandes

London, England

From: blepharophimosis-owner [mailto:blepharophimosis-owner ] On Behalf Of Hayley DesbienSent: 04 August 2010 21:57blepharophimosis-subscribe ; blepharophimosis-owner ; blepharophimosis Subject: Trying to join group...

I am trying to join the group Blepharophimosis and have been waiting a few days now for a response. Both of my daughters and my husband have BPES and we are currently at the point were our daughter has to undergo surgery and I would be really grateful to be accepted into the group. Is there any way to expedite the process of being added to the group?Hayley

[Guest guest]

dear hayley,

besides the expertise of a surgeon i cannot find anything less important as

a good communication with the person you are giving your child to. and that

goes for the support organisation (eg office, secretary, schedulers or

whatever) as well. no way that i would discuss important surgery things with

a clerck. the surgeon is the one and only i would want to address my

questions to. a " thread " like be prepared to wait 3-4 hours before being

seen is from victorian times!

if a surgeon and his organisation are soooo busy that they don't give you,

as a patient and employer (;-))) an opportunity to discuss a very very

important thing like the operation of your child, then i would turn away of

this club and search for an alternative, no matter how far i would have to

travel. so your decision would have been mine.

regards and good luck,

dolph

Trying to join group...

> Â

> I am trying to join the group Blepharophimosis and have been waiting

> a few

> days now for a response. Both of my daughters and my husband have BPES

> and we

> are currently at the point were our daughter has to undergo surgery and I

> would

> be really grateful to be accepted into the group. Is there any way to

> expedite

> the process of being added to the group?

> Hayley

>

------------------------------------

[Guest guest]

dear hayley and others,

probably is the first sentence in my e-mail confusing. it's the translation

of a cynical dutch saying. what i mean to say is that next to the surgeons

expertise the communication with him and his staff is the most important

thing.

regards,

dolph

sorry...sorry.... oh boy... english truely is a difficult language ;-)))

Trying to join group...

>> Â

>> I am trying to join the group Blepharophimosis and have been

>> waiting

>> a few

>> days now for a response. Both of my daughters and my husband have BPES

>> and we

>> are currently at the point were our daughter has to undergo surgery and I

>> would

>> be really grateful to be accepted into the group. Is there any way to

>> expedite

>> the process of being added to the group?

>> Hayley

>>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

We are in San .

> >

> >

> > My grandson is supposed to have surgery in Houston, Texas later this

> month. We were not aware of any doctors in San . How old is your

> daughter? It is usually the sling surgery first, but circumstances are

different

> with each case.

> >

> >

> > The problem we are having is my son's insurance company is trying to

> refuse the surgery and saying it is only cosmetic. We are prepared to go to

> the state insurance board, if necessary. Has your insurance given you any

> trouble about covering the procedure??

> >

> > Has anyone else had troubles with insurance?? Shireen has anyone else

> had to deal with this lack of knowledge and understanding of this condition??

> >

> > Grandma Aggie (Janel)

> >

> >

> >

> >

> >

> >

> > Trying to join group...

> >

> >

> > I am trying to join the group Blepharophimosis and have been

> waiting a few days now for a response. Both of my daughters and my husband

have

> BPES and we are currently at the point were our daughter has to undergo

> surgery and I would be really grateful to be accepted into the group. Is

there

> any way to expedite the process of being added to the group?

> > Hayley

> >

>