Re: Aedan's upcoming surgery

[Guest guest]

Kenley has not gone through any surgeries so we really dont know what the surgery is like. However, as to help getting through this please know my wife and I will be in prayer for Aedan in the mist of all that is going on.

Lancasterrainamint@... wrote:

Hello everyone, Even though i don't write much we are constantly reading and feeling a part of the group which is such a blessing. I thank you all. So now we have something to write. Aedan is scheduled for surgery with Dr. B Campalataro in NY. He is the person who diagnosed Aedan at 10 days old. He is going to correct stabismus (sp?)and also loosed muscles to correct jiggling that Aedan's eye does which forces him to use a tilted head posture (to the side ). The fact that he does not usually use both eyes at the same time his depth perception is probably not great ( he does bump into things a lot and falls down more than most). And because of the head tilt his periphial vision is not great to one side. This surgery should help both those things as well as his sight.

I feel good about the surgery as much as one can. Though the stress dreams are beginning to come. Does anyone have advice for helping Aedan through the ordeal?

[Guest guest]

Kenley has not gone through any surgeries so we really dont know what the surgery is like. However, as to help getting through this please know my wife and I will be in prayer for Aedan in the mist of all that is going on.

Lancasterrainamint@... wrote:

Hello everyone, Even though i don't write much we are constantly reading and feeling a part of the group which is such a blessing. I thank you all. So now we have something to write. Aedan is scheduled for surgery with Dr. B Campalataro in NY. He is the person who diagnosed Aedan at 10 days old. He is going to correct stabismus (sp?)and also loosed muscles to correct jiggling that Aedan's eye does which forces him to use a tilted head posture (to the side ). The fact that he does not usually use both eyes at the same time his depth perception is probably not great ( he does bump into things a lot and falls down more than most). And because of the head tilt his periphial vision is not great to one side. This surgery should help both those things as well as his sight.

I feel good about the surgery as much as one can. Though the stress dreams are beginning to come. Does anyone have advice for helping Aedan through the ordeal?

[Guest guest]

rainamint@... wrote:

> Hello everyone,

> He is going to correct stabismus (sp?)

Close: Strabismus

I've had several operations to tinker with my strabismus. The operation

is called, for some reason I know not, a " squint " operation. Afterwards,

he'll be a little disoriented, until his brain adjusts to the

now-differently-aligned messages it's getting from the eyes. Takes 3-4

days to adjust fully. I recall, after my last one, it feels like walking

along a steep slope - while drunk. They often give anti-nausea drugs

afterwards to counter the disorienting effect.

> and also loosed muscles to correct jiggling that Aedan's eye does which

> forces him to use a tilted head posture (to the side ).

Is that nystagmus?

> The fact that he does not

> usually use both eyes at the same time his depth perception is probably not

> great ( he does bump into things a lot and falls down more than most).

I can sympathise: I'm 44 and I still only use one eye at a time. 3-D

movies are a complete waste of time for me. Having to choose an eye many

times per minute is something of a distraction. The earlier it's done,

the better the chances of learning to use both eyes at once.

> This surgery should help both those things as well as his sight. I feel good

about the

> surgery as much as one can.

It's a relatively common operation. There are no outward signs of it

(i.e. no incision or scarring). I'd think of it this way: it can only

improve things. Apart from the disorientation, the recipient doesn't

have to worry about stitches (and having them removed) - they're all

internal and dissolvable.

There is a ton of information available on the internet. A quick Google

for 'Strabismus operation' or also 'squint' yields such things as:

http://www.pedseye.com/StrabSurg.htm

....for example.

> Does anyone have advice for helping Aedan through the ordeal?

I recall my mum helping me walk afterwards, because I was dizzy due to

the disorientation, so do that. Beware of nausea (his, not yours) due to

dizziness. Let not your heart be troubled. It's not so bad for the

recipient, really (compared with a ptosis fix or bleph repair or

tear-duct relocation, for example).

Hope I've helped.

Rob

[Guest guest]

Hi Rob:)

What is the difference between *ptosis fix* and *bleph repair*? I know ptosis is the drooping eyelid, so it is lifted, but what is the bleph repair actually?.....thanks.

-- Re: blepharophimosis Aedan's upcoming surgery

rainamint@... wrote:

> Hello everyone,

> He is going to correct stabismus (sp?)

Close: Strabismus

I've had several operations to tinker with my strabismus. The operation

is called, for some reason I know not, a "squint" operation. Afterwards,

he'll be a little disoriented, until his brain adjusts to the

now-differently-aligned messages it's getting from the eyes. Takes 3-4

days to adjust fully. I recall, after my last one, it feels like walking

along a steep slope - while drunk. They often give anti-nausea drugs

afterwards to counter the disorienting effect.

> and also loosed muscles to correct jiggling that Aedan's eye does which

> forces him to use a tilted head posture (to the side ).

Is that nystagmus?

> The fact that he does not

> usually use both eyes at the same time his depth perception is probably not

> great ( he does bump into things a lot and falls down more than most).

I can sympathise: I'm 44 and I still only use one eye at a time. 3-D

movies are a complete waste of time for me. Having to choose an eye many

times per minute is something of a distraction. The earlier it's done,

the better the chances of learning to use both eyes at once.

> This surgery should help both those things as well as his sight. I feel good about the

> surgery as much as one can.

It's a relatively common operation. There are no outward signs of it

(i.e. no incision or scarring). I'd think of it this way: it can only

improve things. Apart from the disorientation, the recipient doesn't

have to worry about stitches (and having them removed) - they're all

internal and dissolvable.

There is a ton of information available on the internet. A quick Google

for 'Strabismus operation' or also 'squint' yields such things as:

http://www.pedseye.com/StrabSurg.htm

.....for example.

> Does anyone have advice for helping Aedan through the ordeal?

I recall my mum helping me walk afterwards, because I was dizzy due to

the disorientation, so do that. Beware of nausea (his, not yours) due to

dizziness. Let not your heart be troubled. It's not so bad for the

recipient, really (compared with a ptosis fix or bleph repair or

tear-duct relocation, for example).

Hope I've helped.

Rob

[Guest guest]

costellos wrote:

> Hi Rob:)

>

> What is the difference between *ptosis fix* and *bleph repair*? I know

> ptosis is the drooping eyelid, so it is lifted, but what is the bleph repair

> actually?.....thanks.

Glad you've asked.

As you've correctly described, Ptosis (droopy eyelids) is fixed by the

often-discussed-here 'sling' operation, whereby the eyelids are

connected to the frontalis (forehead) muscles via a fascia lata or

silicone strip.

Blepharophimosis (small eye openings), normally due to telecanthus

(inner canthus too far from nose), and usually, in BPEI-enhanced folks,

complicated by epicanthus inversus (reversal of the overlap/fold of the

epicanthus between the lids), is repaired by one of a range of

operations that involve extending the eye opening's canthus towards the

nose (one method uses incisions that look like a " jumping man " ) while

reversing the fold/overlap (one method is called a " Z-plasty " , again

describing the appearance of the incisions). In my opinion, this is the

" heaviest " operation (or set of them) we BPEI-enhanced go through in our

path to " disenhancement " ;-).

Ptosis and blepharophimosis are different conditions, often occurring

separately, but occurring together in BPEI. Hence the name of the

syndrome: [bPEI] 'B'lepharophimosis-'P'tosis-'E'picanthus-'I'nversus

syndrome or [bPES] 'B'lepharophimosis-'P'tosis-'E'picanthus-inversus

'S'yndrome. There are often other co-morbid conditions, but those are

the main defining ones.

It's all a bit technical, ain't it? I sometimes think we need a thorough

grounding in Latin to make sense of all this medical stuff.

Rob W.

[Guest guest]

Hey Rob,

Thanks for that:).....You really know your stuff.....more so than the Dr's....ever thought of changing professions?........Anyways, your knowledge is so appreciated on this site.....off to bed now, oh to look forward to the crappy weather we are in for, over this fine easter weekend!...have a good one:)

Leanne and family (NZ)

-- Re: blepharophimosis Aedan's upcoming surgery

costellos wrote:

> Hi Rob:)

>

> What is the difference between *ptosis fix* and *bleph repair*? I know

> ptosis is the drooping eyelid, so it is lifted, but what is the bleph repair

> actually?.....thanks.

Glad you've asked.

As you've correctly described, Ptosis (droopy eyelids) is fixed by the

often-discussed-here 'sling' operation, whereby the eyelids are

connected to the frontalis (forehead) muscles via a fascia lata or

silicone strip.

Blepharophimosis (small eye openings), normally due to telecanthus

(inner canthus too far from nose), and usually, in BPEI-enhanced folks,

complicated by epicanthus inversus (reversal of the overlap/fold of the

epicanthus between the lids), is repaired by one of a range of

operations that involve extending the eye opening's canthus towards the

nose (one method uses incisions that look like a "jumping man") while

reversing the fold/overlap (one method is called a "Z-plasty", again

describing the appearance of the incisions). In my opinion, this is the

"heaviest" operation (or set of them) we BPEI-enhanced go through in our

path to "disenhancement" ;-).

Ptosis and blepharophimosis are different conditions, often occurring

separately, but occurring together in BPEI. Hence the name of the

syndrome: [bPEI] 'B'lepharophimosis-'P'tosis-'E'picanthus-'I'nversus

syndrome or [bPES] 'B'lepharophimosis-'P'tosis-'E'picanthus-inversus

'S'yndrome. There are often other co-morbid conditions, but those are

the main defining ones.

It's all a bit technical, ain't it? I sometimes think we need a thorough

grounding in Latin to make sense of all this medical stuff.

Rob W.

[Guest guest]

Where is he having the surgery done ? My sons have gone to NY Eye and Ear...Dr Maher ..who knows your doctor. I think they aregrat with kids there....We have been there about 7 times ....and I LOVE THEM. Is this the 1st surgery ? Good Luck..Sharon rainamint@... wrote:

Hello everyone, Even though i don't write much we are constantly reading and feeling a part of the group which is such a blessing. I thank you all. So now we have something to write. Aedan is scheduled for surgery with Dr. B Campalataro in NY. He is the person who diagnosed Aedan at 10 days old. He is going to correct stabismus (sp?)and also loosed muscles to correct jiggling that Aedan's eye does which forces him to use a tilted head posture (to the side ). The fact that he does not usually use both eyes at the same time his depth perception is probably not great ( he does bump into things a lot and falls down more than most). And because of the head tilt his periphial vision is not great to one side. This surgery should help both those things as well as his sight.

I feel good about the surgery as much as one can. Though the stress dreams are beginning to come. Does anyone have advice for helping Aedan through the ordeal?

[Guest guest]

Thankyou for your special thoughts and Rob for your sharing of

knowledge

Hello Sharon,

Aedan is having his surgery at ny eye and ear. Dr. Maher did his first

sling surgery when he was 10 weeks old. She did a wonderful job! I remember

how wonderful it was to finally be able to have eye contact with him while

nursing. The surgery was a complete success and still holding. I am glad to

hear that NY eye and ear is great with kids. Aedan wasn't quite a kid back then

so I didn't experience how they were.

[Guest guest]

Yah we have been going there for 13 years and believe it or not ...the staff on that floor, nurses, the gentleman that takes them down to the OR, etc ..everyone ...has been there for 13 years ! They are like family when we arrive. We have nothing but positive things to say about them...Good Luck all the best. We saw Dr. Maher friday at NY Eye and Ear....she said we can hold out for now with boys boys ..my younger one looks awesome ...My older one can use an adjustement but he is about to have his "puberty years" so we are trying to hold out as long as we can...because he will grow so much.....Again ...Best of Luck rainamint@... wrote:

Thankyou for your special thoughts and Rob for your sharing of knowledgeHello Sharon, Aedan is having his surgery at ny eye and ear. Dr. Maher did his first sling surgery when he was 10 weeks old. She did a wonderful job! I remember how wonderful it was to finally be able to have eye contact with him while nursing. The surgery was a complete success and still holding. I am glad to hear that NY eye and ear is great with kids. Aedan wasn't quite a kid back then so I didn't experience how they were.

[Guest guest]

Rob:

I was wondering can you write a book about BPES, BPEI and so

fourth! You are so knowledgeable on this subject that I know it

would help me if all of the information you provide to the board

could be in one easy place to look up and refer to.

What do you think?

Take Rob and Have a fabulous Day!

>

> > Hi Rob:)

> >

> > What is the difference between *ptosis fix* and *bleph repair*?

I know

> > ptosis is the drooping eyelid, so it is lifted, but what is the

bleph repair

> > actually?.....thanks.

>

> Glad you've asked.

>

> As you've correctly described, Ptosis (droopy eyelids) is fixed by

the

> often-discussed-here 'sling' operation, whereby the eyelids are

> connected to the frontalis (forehead) muscles via a fascia lata or

> silicone strip.

>

> Blepharophimosis (small eye openings), normally due to telecanthus

> (inner canthus too far from nose), and usually, in BPEI-enhanced

folks,

> complicated by epicanthus inversus (reversal of the overlap/fold

of the

> epicanthus between the lids), is repaired by one of a range of

> operations that involve extending the eye opening's canthus

towards the

> nose (one method uses incisions that look like a " jumping man " )

while

> reversing the fold/overlap (one method is called a " Z-plasty " ,

again

> describing the appearance of the incisions). In my opinion, this

is the

> " heaviest " operation (or set of them) we BPEI-enhanced go through

in our

> path to " disenhancement " ;-).

>

> Ptosis and blepharophimosis are different conditions, often

occurring

> separately, but occurring together in BPEI. Hence the name of the

> syndrome: [bPEI] 'B'lepharophimosis-'P'tosis-'E'picanthus-

'I'nversus

> syndrome or [bPES] 'B'lepharophimosis-'P'tosis-'E'picanthus-

inversus

> 'S'yndrome. There are often other co-morbid conditions, but those

are

> the main defining ones.

>

> It's all a bit technical, ain't it? I sometimes think we need a

thorough

> grounding in Latin to make sense of all this medical stuff.

>

> Rob W.

[Guest guest]

> Rob:

> I was wondering can you write a book about BPES, BPEI and so

> fourth! You are so knowledgeable on this subject that I know it

> would help me if all of the information you provide to the board

> could be in one easy place to look up and refer to.

>

> What do you think?

Well, the mighty Shireen has put a web site together with lots of

information on it, which I believe might work better than a book -

easier to update, FREE, universally available, already written, links to

more detailed (and authoritative) information on medical sites, etc.

Start here: http://freespace.virgin.net/andy.bowles/, but I can't recall

if that's the new one or the old one (Shireen? Jump in, matey!).

Much to my ongoing shame and discomfort, I haven't finished reviewing a

preview of that site's content that I was sent a copy of... oooh... ages

ago. But there seems to be a number of recurring questions here, that we

should make sure are covered on that site (I'm pretty sure they would be).

> Take Rob and Have a fabulous Day!

Sorry, he's already taken. :-)

Rob W.

[Guest guest]

Dr. Campollataro has been my daughter's doctor since birth (she is 3). He is really very kind. I hope all goes well.

Pam