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Dear Debs...I was watching Hme Shopping Network and Suzanne Somers had

some prety pj sets with robes. I thought I'd sure like to get one to

wear after my surgery! : ) What is it they say... " great minds run in

the same circles " ! They were too spendy, but I will get a pretty

little comfy nighty!

I have decided to keep learning about gastric bypass, but not to pursue

it right now. I have the throat surgery, then likely a microdiskectomy

for my disk herniations. What I'm hoping & praying for is that through

the physical therapy I'm going through, some good food choices, and the

throat surgery, I will lose at least 20 - 30 pounds over the next few

months. This will also make the back surgery easier on me. Then after

recuperating from the back surgery I''ll pursue the bariatric surgery

if it seems like the best idea. I go to www.obesityhelp.com to read

about others pursuing WLS (weight loss surgery) and folks who have

already had it. I also looked at their Memorial to those who died from

complications or things related to the surgery. I really want to be

educated before I expend the energy to fight for the surgery, as for

many folks there are SO many hoops to jump through to get it done.

Please keep me posted on your journey & decision, Debs. Whatever is

best for you, I'll support you 100%.

Thank you so much for your kindness. You really touch my heart .

Hugs of Hope & Love....

Tess

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Dear a...I am so grateful for you & this group of great folks.

Right from the get-go you all have offered such kind support and a

multitude of prayers. I feel very blessed. And yes, I'll still be able

to " talk " to you all after the surgery...I imagine I might be serving up

a little " whine " !

Love & Hugs...

Tess

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Tess,

Oh that doesn't sound like to much fun, but unfortunately living with infected

tonsils isn't

any fun either. At least you'll be able to talk to us without causing any more

pain :)

As far as surgery while on remicade, the only thing I've read is that they

monitor

you for infection since being on remicade increases your susceptibility for

infection.

I know how scary it is but we are a very powerful group when we all pray

together,

and you will have lots of prayers!

hugs,

a

[ ] Surgery

Hi Friends...my way too huge tonsils are infected yet again. Both my

ENT and Respiratory Therapist believe a tonsillectomy & uppp surgery

will greatly help me in several ways.

Both my rheummy and ENT do not think it necessary for me to go off

Remicade prior to surgery, as prophalactic antibiotics will be used.

This sort of surprises me from what I've read about Remicade, but I do

believe I have great doctors. Any thoughts?

I should find out the surgery date next week. The ENT said he will

admit me the day prior to surgery to be monitored by the Respiratory

Pulmonologist and a couple days after as well. He said to be prepared

for two rough weeks, then another two further recuperating.

I'm scared, but more than that I do so much want to improve my health.

Prayers wanted!

Love to all...

Tess

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Tess,

We'll be prepared to receive as much " whine " as you care to share :)

This group is a blessing for us all. It helps to talk to someone that

understands.

hugs,

a

Re: [ ] Surgery

Dear a...I am so grateful for you & this group of great folks.

Right from the get-go you all have offered such kind support and a

multitude of prayers. I feel very blessed. And yes, I'll still be able

to " talk " to you all after the surgery...I imagine I might be serving up

a little " whine " !

Love & Hugs...

Tess

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Joe

My son Aedan had surgury this summer. We are happy with the results so

far. The doctors name is Mayer at NY eye and Ear Hosp. 212 979

4575

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Thanks for that , however I can't seem to find the relevant information on Surgery for Epicanthus...which we've been told will be our daughters first surgery and has to come before the ptosis surgery. Is there a correct name for the Epicanthus surgery?

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Can you tell me how your sons coped after the surgery and how it was for you? What age did they have this surgery done. Thanks for your help.

Regards

Re: blepharophimosis re: Surgery

I'm not really sure if there is a correct name for the Epicanthus surgery, but from what my surgeon said the epicanthus is the skin fold between the corners of the eyes and the nose. For my sons, that is the first surgery that is done as well. The way my surgeon described it was that he would cut "flaps" in the excess skin and move the corner close to the nose if that makes any sense. The link i had sent showed the markings on the epicanthus before surgery and after. I do think it said that the girl they showed had something else done as well though.

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I'm not really sure if there is a correct name for the Epicanthus surgery, but from what my surgeon said the epicanthus is the skin fold between the corners of the eyes and the nose. For my sons, that is the first surgery that is done as well. The way my surgeon described it was that he would cut "flaps" in the excess skin and move the corner close to the nose if that makes any sense. The link i had sent showed the markings on the epicanthus before surgery and after. I do think it said that the girl they showed had something else done as well though.

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,

My oldest son had his first surgery when he was 5 yrs old. He did really well, except for when he was waking up in recovery. He's a screamer when he's coming around. He was kinda in and out all that day and the next day or two he just watched alot of tv. After that he was back to himself. The worst part for me was trying to keep him occupied because he wasn't allowed to go to school or play alot. The surgeon wanted him to remain as calm as possible. I spent alot of money that week on him trying to keep him busy. He had to go back to the hospital and get put under again to have the stitches taken out. I've been trying to remember how long it was after the surgery because Garrett, who just turned 5 yrs old last week, is having his surgery on Aug. 29. Garrett has had a temporary "Suture Sling", which is what the docs called it, when he was 4 months old just to get his eyes open enough so his eyelid wasn't covering his pupils. About 2 years ago he had surgery for Dwaynes Retraction Syndrome and he did fine as far as the surgery went. He was ready to play around when we brought him home from the hospital. I guess i'll see how he his in a few weeks after this surgery. He also has ADHD so hopefully he won't be so hyper. The surgeon wouldn't do his surgery until he was put on meds because Garrett is so hyper and accident prone that he was afraid that he would fall and hit his face or do something to it. He also told me that he's not going to be able to wear his glasses the "normal" way. I think he's going to be alot harder to deal with than Austin was. He is constantly hurting himself. Not on purpose, i just think he has trouble judging his distance from things. There isn't a day that goes by that he doesn't hit his face on something. Today it was the corner of my husbands dump truck, and because the truck is high he hit right at the eye brow. Good thing he hadn't had surgery..i'd be in trouble.

Well, i think i've went on just a little too much, so i'll stop now. How old is your daughter?

Can you tell me how your sons coped after the surgery and how it was for you? What age did they have this surgery done. Thanks for your help.

Regards

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My daughter Alyssa is 8 Months old. The DR's were hoping for her to be 4 years before surgery, but one of her lids has dropped considerably and they are anticipating surgery early. It sounds like quite an ordeal to put a little one through. Hope all goes well with your son Garrett on the 29th. Thanks for your info.

Re: blepharophimosis re: Surgery

,

My oldest son had his first surgery when he was 5 yrs old. He did really well, except for when he was waking up in recovery. He's a screamer when he's coming around. He was kinda in and out all that day and the next day or two he just watched alot of tv. After that he was back to himself. The worst part for me was trying to keep him occupied because he wasn't allowed to go to school or play alot. The surgeon wanted him to remain as calm as possible. I spent alot of money that week on him trying to keep him busy. He had to go back to the hospital and get put under again to have the stitches taken out. I've been trying to remember how long it was after the surgery because Garrett, who just turned 5 yrs old last week, is having his surgery on Aug. 29. Garrett has had a temporary "Suture Sling", which is what the docs called it, when he was 4 months old just to get his eyes open enough so his eyelid wasn't covering his pupils. About 2 years ago he had surgery for Dwaynes Retraction Syndrome and he did fine as far as the surgery went. He was ready to play around when we brought him home from the hospital. I guess i'll see how he his in a few weeks after this surgery. He also has ADHD so hopefully he won't be so hyper. The surgeon wouldn't do his surgery until he was put on meds because Garrett is so hyper and accident prone that he was afraid that he would fall and hit his face or do something to it. He also told me that he's not going to be able to wear his glasses the "normal" way. I think he's going to be alot harder to deal with than Austin was. He is constantly hurting himself. Not on purpose, i just think he has trouble judging his distance from things. There isn't a day that goes by that he doesn't hit his face on something. Today it was the corner of my husbands dump truck, and because the truck is high he hit right at the eye brow. Good thing he hadn't had surgery..i'd be in trouble.

Well, i think i've went on just a little too much, so i'll stop now. How old is your daughter?

Can you tell me how your sons coped after the surgery and how it was for you? What age did they have this surgery done. Thanks for your help.

Regards

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,

You could ask the DR's about a temperary "sling". That's what they did for garrett. They go in the eyelid and use what that call a suture sling to raise the eyelid. I was told that it could come undone at around 2 yrs, but it didn't. After his dwayne's surgery i did notice that the left i was alot lower than the other one, but the dr's didn't seem to concerned. My surgeon has always told me the older they are the better the surgery results. Just a thought.

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Hi Behave, my name is . In 1997 I had major re-construction on my

left foot, eight months later the right. I had my arches lowered my Achillies

tendon stretched on both feet, some tendons pulled up, and a list of other

things

I can't recall at this time. Yes, it was a gruling surgery , but well worth

it ! I could not wear a shoe lower than 2 " heel. I couldn't put my feet flat on

the floor. Now to see me in my sock feet walking thru my house is a miracle.

I have since had tendon release procedures on all 10 toes. The surgery

straightened my toes somewhat and makes it easier . I do walk with a cane and I

am

fortunate my hubby takes me where I need to go. I can not drive because of

virtually no feeling in my feet. A small price to pay. If you decide to have the

surgery best of luck to you. I know you will benefit greatly !

Best of luck,

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Hi ,

Great to know someone else went thru the same thing as I. How are

your feet doing as of now? I have a pinched nerve in one of my toes and have had

injections. Seems it goes along with the territory....

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Hi Behave, I had the same surgery done as did. I have the exact same

experience as she does. To be able to walk around the house with no shoes on is

a miracle for me also. I can't drive either but it is a small price to pay. If

you go ahead and do the surgery I will be here for you as I am sure will

be. Best of luck in whatever decision you make.

B.

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, I just had the tendon release on my toes. The doctor doesn't want to

get into the straightening of my toes with screws, etc. because I am

diabetic. Although I do have screws in the top of my feet due to the

re-construction

surgery.

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Hello everyone!

It has been quite a while since I have written. is now 18 months and

doing great. My question for all of you is this,... we saw 4 doctors for

in the philadelphia area. Three out of four did not recommend surgery at least

not for the ptosis part. They say her case is more mild yet at times you really

notice the ptosis. Has anyone not gotten surgeryand are happy with that

descision. we are just trying to do the right thing.

thanks nina

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Hi Nina

I met a young girl - she was around 13 at the time - who has very mild BPES. Her father also has BPES. Her mother considered all the options and decided not to have any surgery. I recently saw photos of her at age 18, and she looks just great.

I remember asking the specialist at Moorfields Eye Hospital at London, if any people never have surgery. The reply was that in some cases the BPES was so mild, no action was taken.

Shireen

-----Original Message-----From: ninaasadoorian [mailto:nma420@...]Sent: 27 March 2004 15:38blepharophimosis Subject: blepharophimosis re:surgery

Hello everyone!It has been quite a while since I have written. is now 18 months and doing great. My question for all of you is this,... we saw 4 doctors for in the philadelphia area. Three out of four did not recommend surgery at least not for the ptosis part. They say her case is more mild yet at times you really notice the ptosis. Has anyone not gotten surgeryand are happy with that descision. we are just trying to do the right thing.thanks nina

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Hi Nina...Do you have a pic of gianna that we could see?

-- RE: blepharophimosis re:surgery

Hi Nina

I met a young girl - she was around 13 at the time - who has very mild BPES. Her father also has BPES. Her mother considered all the options and decided not to have any surgery. I recently saw photos of her at age 18, and she looks just great.

I remember asking the specialist at Moorfields Eye Hospital at London, if any people never have surgery. The reply was that in some cases the BPES was so mild, no action was taken.

Shireen

-----Original Message-----From: ninaasadoorian [mailto:nma420@...]Sent: 27 March 2004 15:38blepharophimosis Subject: blepharophimosis re:surgery

Hello everyone!It has been quite a while since I have written. is now 18 months and doing great. My question for all of you is this,... we saw 4 doctors for in the philadelphia area. Three out of four did not recommend surgery at least not for the ptosis part. They say her case is more mild yet at times you really notice the ptosis. Has anyone not gotten surgeryand are happy with that descision. we are just trying to do the right thing.thanks nina

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the one thing that you have to realize is that technology has done a complete 360 from when your husband had his surgery, there fore your daughter may not have the same problems. but then again you will get many responses showing the things that can go wrong. as for your daughter the doctor will let you know if she "must"get surgery. it all depends on her field of vision, for example my son was 6 weeks old when he had his 1st surgery but his field of vision was being obstructed in a big way so he pretty much had to get it done, my son now has had all of his mandatory surgeries and it is either up to me to get anymore done from a cosmetic prospective or up to him if he feels he may want to change the way he looks,( my son is almost 7) I hope this helps a bit.

Tonikka

-----Original Message-----From: kerry bennett [mailto:mnmom1325@...]Sent: April 11, 2004 12:40 AMblepharophimosis Subject: blepharophimosis Surgery

Hi my name is Kerry and I have a husband with Bleps as well as a two year old daughter, We have a apponitment with a plastic surgeon in a couple of weeks to see whether it is the right time to operate on our daughter or to wait till she is about 3 or 4.

My husband was operated on when he was 13 months old and he has had all sorts of problems now that he is older.

I would like to hear from anyone who has had their children operated on at this age or has been operated on themself good or bad.

Kerry

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Hi Kerry, welcome to the group and to all the newcomers. Hope all goes well with your daughters visit to the surgeon. Please can you give some more information as to what sort of problems your husband is having and are they connected to bad surgeries?

Thank you, Regards,

blepharophimosis Surgery

Hi my name is Kerry and I have a husband with Bleps as well as a two year old daughter, We have a apponitment with a plastic surgeon in a couple of weeks to see whether it is the right time to operate on our daughter or to wait till she is about 3 or 4.

My husband was operated on when he was 13 months old and he has had all sorts of problems now that he is older.

I would like to hear from anyone who has had their children operated on at this age or has been operated on themself good or bad.

Kerry

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Hi Kerry....What kind of problems is your husband having? We have been told to wait for surgery for our son *ethan* until he is about 4, apparently because they are older the surgery results are better, everything has had time to mature more, but the time all depends on each person's severity of blephs, our wee man, has a good chin up posture, and uses his wee forehead to see, so far you wouldn't know he has blephs, he is 14 months old, and is finally walking everywhere:), still falls over like he is drunk, I sometimes wonder if thats to do with the balance thing cause of blephs????

leanne:)

-- blepharophimosis Surgery

Hi my name is Kerry and I have a husband with Bleps as well as a two year old daughter, We have a apponitment with a plastic surgeon in a couple of weeks to see whether it is the right time to operate on our daughter or to wait till she is about 3 or 4.

My husband was operated on when he was 13 months old and he has had all sorts of problems now that he is older.

I would like to hear from anyone who has had their children operated on at this age or has been operated on themself good or bad.

Kerry

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Thanks so much for the info . You give me hope. I used

to live barefoot, couldnt wait to get home an kick off my

shoes, now I have to always have them on. I can wear flats

but cant walk for long periods of time in them, just short

distances.I twist my ankle alot and have a bum toe that I

just want to chop off @ times but I know if I do with my

luck they would find a cure the next day and I would really

never be able to wear sandles.LOL I WANT TO WEAR HEELS,I

LOVE SHOES. can you wear slip ons? That would be a dream

come true for me, slip on heels. Sounds so petty and silly I

know but it would be nice.My favorite shoes are New Balance

704- They are like walking on air for me. Thanks again Pam O.

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,

I don't know the nature of your surgery. I've had my left done 3 times. Sounds

like someone may have botched yours. mine is great other than the

arthritis that has been coming on for some time. I think that you should have

the next operation when you feel you are ready (mentally). I've read where

many of the surgeries you have coming up are done unnecessarily. Have you had

any second opinions?

Dave

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Hi,

I have not heard this before. Although when I had my hysterectomy they did it

under spinal anesthesia so I didn't have to be intubated. I have lungs problems

besides alot of CMT symptoms. I went through a couple of months when my right

lung would keep collapsing. I had the top part of it cut off. Since then it

hasn't collapsed anymore. My lung capacity is pretty low so it isn't a good

thing for me to have General anesthesea. I don't think that is related to the

CMT though. But you should ask about spinal anesthesea. It was great. No nausea

after. Good luck to you and your Mom. Let me know how everything turns out.

Bobbie

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Hi

I live in London, and I would be very happy to contact you by phone or

arrange to meet up with you.

Which hospital and doctor are involved?

Do you know if your boy has BPES? Your GP should be able to tell you. If

your GP does not know, then they should be able to find out for you.

I am told that it is advisable to get a referral to a genetic couselling

unit as they are better equipped to supply you with a diagnosis, information

and treatment options.

Take care

Shireen

> blepharophimosis Surgery

>

>

>

> My two and a half years old boy is going to have surgery on

> May and I'm very worried. Nobody wants to give me an

> explanation about what's involved or what are the after op

> cares. I'd be grateful if somebody'd help me. He's gotPtosis

> but his eyelid has movement. Thank you I live in Surrey,

> England, if somebody wants to meet us.

>

>

>

>

>

>

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