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I was schedule to do eye surgery this week , (cateracts) , but needed to be

be postponed for a month ... I'm interested on this subject as well ...

Walter@... or essexhaus@... 26 yrs. Reiters /46yo

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Steve Hinnenkamp wrote:

>

> Has anyone in the group had laser eye correction done? I am thinking of doing

this but am concerned if the reiters connection might not be good.

Steve, I have AS and I'm not sure if Reiters patients have problems with

uvieits, but I'll comment anyway. I have completely blind in one eye as

a result of complications from iritis. My other eye has been flaring

with iritis for five years and I developed a cataract as a result of the

treatment. I spent about two months seeing 20/100 in one eye. Trauma

and stress can cause flares. I would suggest you consult with an

optholmologist - not the person who would do the surgery - about whether

you are at risk for a flare with your Reiters. Believe me, you don't

want to mess with your eyes if they are quiet. Best of luck to you and

congratulations on your remission.

Judi

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

>

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  • 1 year later...

In a message dated 25/02/2004 20:37:40 Central Standard Time,

juner24@... writes:

>

> Hi all, don't know if I men tioned it but on March 3 I get my cataract

> removed, I just read the directions on the eye drop and it says one drop every

4

> hours. Does anyone know if this means ever 4 hours literally during the night?

> Probably a dumb question but this is all new to me. The other eye gets done

> March 22.

>

> Hugs

> June

>

Usually the doc will specify, so I would ask. Some things are while awake,

some are around the clock. I'm guessing while awake or they would have told

you, but I would still clarify it. Cary

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I have a daycare and have had the question come up a lot with children's

medications. If it says 3 times a day, you don't have to get up during the

night. But, if it definitely states every 4 hours you are supposed to do it

every 4 hours. I don't know anything specifically about the eye drops, though.

Becky

[ ] eye surgery

Hi all, don't know if I men tioned it but on March 3 I get my cataract

removed, I just read the directions on the eye drop and it says one drop every 4

hours. Does anyone know if this means ever 4 hours literally during the night?

Probably a dumb question but this is all new to me. The other eye gets done

March 22.

Hugs

June

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June, good luck on your eye surgery coming up. I will keep you in my

prayers, bless you Tawny

> Hi all, don't know if I men tioned it but on March 3 I get my

cataract removed, I just read the directions on the eye drop and it

says one drop every 4 hours. Does anyone know if this means ever 4

hours literally during the night? Probably a dumb question but this

is all new to me. The other eye gets done March 22.

>

> Hugs

> June

>

>

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Hi June,

My one year old is having a cataract removed on Tuesday, and I know

we are to wake her up to put drops in. I'd definately ask your

doctor. I assume since you are an adult you will get an implanted

lens put in, which may change things. My daughter is too small to

get that. We will need to put a prosthetic contact lens on her. So,

maybe that would change the frequency of your drops. Either way, ask

your doctor and good luck to you on Wednesday!

> Hi all, don't know if I men tioned it but on March 3 I get my

cataract removed, I just read the directions on the eye drop and it

says one drop every 4 hours. Does anyone know if this means ever 4

hours literally during the night? Probably a dumb question but this

is all new to me. The other eye gets done March 22.

>

> Hugs

> June

>

>

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I'm sending prayers and best wishes for your daughter, you, and your

family for Tuesday, !

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Re: eye surgery

> Hi June,

>

> My one year old is having a cataract removed on Tuesday, and I know

> we are to wake her up to put drops in. I'd definately ask your

> doctor. I assume since you are an adult you will get an implanted

> lens put in, which may change things. My daughter is too small to

> get that. We will need to put a prosthetic contact lens on her. So,

> maybe that would change the frequency of your drops. Either way, ask

> your doctor and good luck to you on Wednesday!

>

>

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Hi June... didn't know you had this surgery! I have " several " on my

right eye. They say they are not yet " big enough " to take off!!!???

Wellllllllll.... Hello! I CAN'T SEE OUT OF THAT EYE!

Anyway... I don't think 'every 4 hours' would be problem for most of

us... as I don't think ANY of us SLEEP 4 HOURS in a night straight!

How was the surgery? It scares me to death thinking of having it done.

How was it " during " the surgery? I mean... I use to HATE for my mom to

take a speck of dirt out of my eye when I was little.

I really do " fear " thinking of having to eventually have this done.

Can you tell how it was? What they do/did? Felt during and AFTER???

Susie

June Dixon wrote:

> Hi all, don't know if I men tioned it but on March 3 I get my

> cataract removed, I just read the directions on the eye drop and it

> says one drop every 4 hours. Does anyone know if this means ever 4

> hours literally during the night? Probably a dumb question but this is

> all new to me. The other eye gets done March 22.

>

> Hugs

> June

>

>

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June,

I would call and ask your doctor and see what they say. Don¹t feel like

it¹s a dumb question. My FIL always says the only dumb question is the one

not asked. Good luck with your surgeries.

a

> Hi all, don't know if I men tioned it but on March 3 I get my cataract

> removed, I just read the directions on the eye drop and it says one drop every

> 4 hours. Does anyone know if this means ever 4 hours literally during the

> night? Probably a dumb question but this is all new to me. The other eye gets

> done March 22.

>

> Hugs

> June

>

>

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June,

I don't remember having to get up during the night to put drops in when I had

mine done but -I would call the dr. and get the info from him just to be on the

safe side.

June Dixon <juner24@...> wrote:

Hi all, don't know if I men tioned it but on March 3 I get my cataract removed,

I just read the directions on the eye drop and it says one drop every 4 hours.

Does anyone know if this means ever 4 hours literally during the night? Probably

a dumb question but this is all new to me. The other eye gets done March 22.

Hugs

June

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Hi Susie, I have not had the surgery yet. Right eye is on March 3 and left,

March 22. Like you, I cannot stand anyone touching my eyes. Eye drops were out

of the question LOL. They use a new technique, which I just found out today at

the pre-op today. I go in and all you have to take off is your top. They give

you something just to calm you down and the procedure, which takes 10-15 mins,

is done by freezing the eye and using laser. She tells me after one day, I can

start teaching again or whatever. However, I will tell you all about it after it

is done. Apparently you now have the option and you make the decision when you

want the cataracts removed and no longer do you have to wait until they " are

ready " . You just tell your eye doctor and he refers you to a surgeon. The hard

part up here in Canada is, the waiting time for the surgery is 6 months to a

year. I was very fortunate the hospital gave my surgeon an extra hospital day, I

happened to be there and she offered it to me. If I had not taken the March 3

date, it would have been August. BTW I am so happy to have you back posting

again. I was gone for a time myself and it feels like coming home with all my

pals.

Hugs

June

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

From: Elf

Hi June... didn't know you had this surgery! I have " several " on my

right eye. They say they are not yet " big enough " to take off!!!???

Wellllllllll.... Hello! I CAN'T SEE OUT OF THAT EYE!

Anyway... I don't think 'every 4 hours' would be problem for most of

us... as I don't think ANY of us SLEEP 4 HOURS in a night straight!

How was the surgery? It scares me to death thinking of having it done.

How was it " during " the surgery? I mean... I use to HATE for my mom to

take a speck of dirt out of my eye when I was little.

I really do " fear " thinking of having to eventually have this done.

Can you tell how it was? What they do/did? Felt during and AFTER???

Susie

June Dixon wrote:

> Hi all, don't know if I men tioned it but on March 3 I get my

> cataract removed, I just read the directions on the eye drop and it

> says one drop every 4 hours. Does anyone know if this means ever 4

> hours literally during the night? Probably a dumb question but this is

> all new to me. The other eye gets done March 22.

>

> Hugs

> June

>

>

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Guest guest

Oh my goodness, , poor little baby. I have never heard of an infant having

cataracts. Does your daughter have other health issues as well? Thanks for

taking the time to answer my query, I have found out that I use the eye drops 4

times daily, breakfast,lunch,dinner and bedtime.

Hugs

June

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  • 2 years later...

Hi Pat,

I had Lasik on both eyes 5 years ago before I was diagnosed. I went

through a battery of tests that took 3 hours long before the surgeon

said it could be done.

I highly recommend you see a surgeon and not a clinic. Only because of

your special needs. I have eye issues now, and use Restasis and Systane

daily. My eyes flare up where it looks like a vaseline smear. It is the

pitting of the cornea. However as long as I lubricate them 5 times a

day and make sure I take all make-up off at night I am ok.

Good luck, and I pray you get good results.

Kay

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  • 8 months later...

Nan,

Brings back memories when I had cats removed in 1986. The hard part was

doing one eye, waiting 3 months, then doing the other eye.

Be careful, dont go too fast until you see better. LOL Bumper cars,

yeah. Be fun to get in one of those again, wonder if they will let me. LOL

*---* *---* *---* *---* *---*

Everything should be made as simple as possible, but no simpler.

& Dreamer Doll ke7nwn

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

http://webpages.charter.net/dog_guide/

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  • 1 year later...

Can anyone help? My daughter has BPES and she is about to turn 1 next

month. I really want her to start the process of her eye surgery (she

has to get one to raise and the other to widen) As of right now it is

not effecting her vision but for Aesthetic purposes I want her to get

the process done while she is still little. we are from NEW JERSEY and

currenly see Dr. Mikey in Paterson,NJ. I am having difficulty getting

this process going with him and am looking for a refferal to any good

eye doc with experience with BPES. I am willing to travel to NJ,

NY,PA. Can anyone help?????

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:There are several great dr's in the world and several great dr's in the states. There are also different opinions on the best time for surgery all with their own merits. Due to the rarity of BPES, the fact that cases can be so different, and the varying materials that can be used for the slings, there is not a definite best time to do surgery or to do surgery at all. Having said all of that, after consulting with several dr's here in the Chicago area we were referred to Dr. Katowitz at Children's Hospital of Philadelphia. He is a pediatric oculoplastic surgeon as well as an ophthalmologist. He has many BPES patients and since every case can be different he can advise you and your family on what course of treatment and/or surgery would be best. A nurse who works with him by the name of Ivy Kuhn is also a

great resource to speak to. He does book out fairly far in advance but if you are traveling in to see him his scheduler may be able to help accommodate your schedule as well. We came from Chicago to see him and were able to get a consultation in fairly quickly last year. We then scheduled our surgery for about two months later. Our son had surgery at 10 months and again at 13 months due to one of the slings breaking. I would be happy to address any specific questions. 's pictures are in the database. --Anne Weber (anrweber@...)-- Chicago, IL USAFrom: kellymconover <kellymconover@...>Subject: blepharophimosis Eye surgeryTo:

blepharophimosis Date: Tuesday, January 27, 2009, 8:46 AM

Can anyone help? My daughter has BPES and she is about to turn 1 next

month. I really want her to start the process of her eye surgery (she

has to get one to raise and the other to widen) As of right now it is

not effecting her vision but for Aesthetic purposes I want her to get

the process done while she is still little. we are from NEW JERSEY and

currenly see Dr. Mikey in Paterson,NJ. I am having difficulty getting

this process going with him and am looking for a refferal to any good

eye doc with experience with BPES. I am willing to travel to NJ,

NY,PA. Can anyone help?????

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We live in Philadelphia have a 12 year old son who just had his 4th

surgery. We would highly recommend both Drs. and

Katowitz (father and son) at the Children's Hospital of Philadelphia

(CHOP) since you are willing to travel to PA. In short, we could not

have asked for more in terms of quality of care, and the results of his

surgery were more than we expected. His previous surgeries, which

commenced at 3 months, were performed at St. 's Children's

Hospital and the former Temple Children's Hospital by Dr. ph

Kubacki, who is also very good.

I would imagine that you should have excellent options in and around

NYC. If you have trouble, though, please look up Drs. Katowitz and at

least have a consultation. It will be worth the effort. Good luck!

, Connie and Jordan Zagerman

>

> Can anyone help? My daughter has BPES and she is about to turn 1

next

> month. I really want her to start the process of her eye surgery

(she

> has to get one to raise and the other to widen) As of right now it is

> not effecting her vision but for Aesthetic purposes I want her to get

> the process done while she is still little. we are from NEW JERSEY

and

> currenly see Dr. Mikey in Paterson,NJ. I am having difficulty

getting

> this process going with him and am looking for a refferal to any good

> eye doc with experience with BPES. I am willing to travel to NJ,

> NY,PA. Can anyone help?????

>

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Hi

Just to let you know (and I am sure that the others in this

group will agree) the way to determine the best timing for your daughter’s

surgery is with the advice of an expert, which is usually an oculoplastic surgeon.

If there is no reason to have surgery immediately sometimes the surgeons

recommending delaying until the child is older. I am not a medic, so it is

wrong for me to pass on medical advice. What I can say is that it is good to do

some reading, find out a bit more, and put together a list of questions to ask

the surgeon. Many people in this group have chosen to hold back on have

treatment, and this should be a consideration for everyone.

Try reading this link:

http://emedicine.medscape.com/article/839075-overview

especially

the part that starts: Blepharophimosis

ptosis syndrome

and also read 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

the part that says:

Management. Timing of

eyelid surgery involves weighing the balance of early surgery to prevent

deprivation amblyopia and late surgery to allow for more reliable ptosis measurements.

Surgery involves a medial canthoplasty for correction of the blepharophimosis,

epicanthus inversus, and telecanthus at three to five years of age, followed a

year later by ptosis correction, usually requiring brow suspension. Autogeneous

fascia lata is not reliable before 3.5 to four years of age; in younger

children, silastic slings can be used. For individuals with severe ptosis,

surgical ptosis repair is recommended before the age of three years; for

individuals with moderate ptosis, correction may be deferred until the age of

five years. Ovum donation is the only possible therapy for the female

infertility resulting from premature ovarian failure. Endocrinologic and

gynecologic follow-up are advised in affected females in whom the BPES type is

unknown or in whom BPES type I is suspected.

Just to be sure, I am not trying to persuade anyone to do

anything other than research the subject and to consider all the advantages and

disadvantages, taking some time. There is no hurry, and you feel

more confident about your decision about timing and treatment having spoken

with the relevant expert professionals.

Take care

Shireen Mohandes

London, England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of kellymconover

Sent: 26 January 2009 19:47

blepharophimosis

Subject: blepharophimosis Eye surgery

Can anyone help? My daughter has BPES and she

is about to turn 1 next

month. I really want her to start the process of her eye surgery (she

has to get one to raise and the other to widen) As of right now it is

not effecting her vision but for Aesthetic purposes I want her to get

the process done while she is still little. we are from NEW JERSEY and

currenly see Dr. Mikey in Paterson,NJ. I am having difficulty getting

this process going with him and am looking for a refferal to any good

eye doc with experience with BPES. I am willing to travel to NJ,

NY,PA. Can anyone help?????

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I would agree 100%. My son was diagnosed with BPES and after doing a

lot of research we chose Dr. Katowitz with CHOP. We commute from

Long Island to see him. We were looking for specialists located in NYC,

NJ, PA, MA, CT and could not be any happier with our decision in terms

of quality of care, knowledge, experience, support, etc...My son had his

1st surgery when he turned 1 1/2 yrs old and we were very pleased with

the results. Since then he has progressed quite nicely and is expected

to have his second surgery later this year ( around 3 yrs old).

Generally we travel every 5-6 mos. for a checkup. Additionally, we have

spoken with him on the phone, as well as one of his medical residents -

Kate - in connection with any questions we had since we live out of

state.

> >

> > Can anyone help? My daughter has BPES and she is about to turn 1

> next

> > month. I really want her to start the process of her eye surgery

> (she

> > has to get one to raise and the other to widen) As of right now it

is

> > not effecting her vision but for Aesthetic purposes I want her to

get

> > the process done while she is still little. we are from NEW JERSEY

> and

> > currenly see Dr. Mikey in Paterson,NJ. I am having difficulty

> getting

> > this process going with him and am looking for a refferal to any

good

> > eye doc with experience with BPES. I am willing to travel to NJ,

> > NY,PA. Can anyone help?????

> >

>

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