New to the group

[Guest guest]

When my daughter was small she had some tests done on her heart because of the murmur. (EKG and an ultrasound?) and they were all normal so... Maybe I shouldn't freak out.

[Guest guest]

Our (mildly) bleph son also had very severe reflux (ulcerated

oesophagus, etc), and failed to thrive as a result. Turns out he was

born with a sliding hiatus hernia which required fundoplication surgery

when he was 8 months old. I've seen a journal article that lists

reflux/hiatus-hernia/etc as one of the other things that sometimes

occurs along with BPEI. Like Kristyn, my son also had an " innocent "

heart murmur when very young (not now: he's 11), so maybe that's another

thing that sometimes ocurs along with BPEI.

Rob

tltne wrote:

> Hi ...Just had a question, You mentioned all the problems that your

> son had as a baby...reflux...not sleeping through the night...failure to

> thrive...etc...Do you think that is because he has blephs?...or was this

> from other reasons?...Our son has blephs, only one in the family who does?..

> Well so far he has been a dream, he has always been a great sleeper, never

> been sick, just the odd cold, happy all the time! He has a smile that

> lights up a room:)... So I was just curious as to what you mean, if you

> associate all those things with having blephs! To us, he just has narrow

> eyelids, nothing else...

>

[snip}

and, earlier, Kristyn wrote:

> Hello,

>

> After 5 years of doc's and people saying " there is something going on

> w/your son but we can't put our finger on it " we have a diagnosis. I

> just received the letter from our genetics doctor, he has BPES, they

> are still unsure of the type, and both my husband and I are

> unaffected w/the gene.

[...]

>

> When he was a baby he NEVER slept through the night, was a poor

> feeder and had severe reflux. He was taken off all milk proteins

> which cleared him from all reflux medication. He was failure to

> thrive and both me and our pediatrician at the time both fought the

> stomach tube and won! Since his ptosis was the only thing detected,

> although he had a murmur at birth, my pediatrician had enough insight

> to say that he may have a syndrome, he just didn't know what kind, so

> we were just happy he was finally over his severe reflux. He did

> very well for about 2 years. At 3 years old they heard the murmur

> again (wicked hard to detect even by his cardiologist) and had an

> irregular ekg and our new pediatrician (We moved to Mass) sent us

> straight to childrens hospital, he was diagnosed w/a VSD. Since then

> he has had a tube removed from his ears, found to have conductive

> hearing loss, tubes put back in, and several procedures to determine

> why he has a chronic cough. He has polyps on his vocal chords, which

> he will need voice therapy for. And is once again having problems

> w/his tubes, his ENT and I see each other regularly!!

>

> Kristyn

[Guest guest]

Kristyn,

My daughter also had severe reflux when she was younger. Is that related to VSD?

I had a nagging feeling the reflux was somehow connected to Bleph and now I am

pretty sure. You are I think the 3rd parent who's child had reflux problems

also. Now I am worried about the VSD She had her heart checked when she was

in the hospital she had a small murmur but the DR said it was a pulmonary one

and would heal itself and noone has heard it since. She has no other problems.

[Guest guest]

I don't think reflux is connected at all to blephs...my best friends son had reflux, also my cousins son, and they don't have blephs...my 1st son was a real *spitter upper* could have been reflux, but never got told it was...and he doesn't have blephs either! reflux is a very comman thing among any baby...

-- Re: blepharophimosis new to the group

Kristyn,My daughter also had severe reflux when she was younger. Is that related to VSD? I had a nagging feeling the reflux was somehow connected to Bleph and now I am pretty sure. You are I think the 3rd parent who's child had reflux problems also. Now I am worried about the VSD She had her heart checked when she was in the hospital she had a small murmur but the DR said it was a pulmonary one and would heal itself and noone has heard it since. She has no other problems.

[Guest guest]

what is VSD???

-- Re: blepharophimosis new to the group

Kristyn,My daughter also had severe reflux when she was younger. Is that related to VSD? I had a nagging feeling the reflux was somehow connected to Bleph and now I am pretty sure. You are I think the 3rd parent who's child had reflux problems also. Now I am worried about the VSD She had her heart checked when she was in the hospital she had a small murmur but the DR said it was a pulmonary one and would heal itself and noone has heard it since. She has no other problems.

[Guest guest]

My son's reflux may or not be related to blephs, it was just the

beginning of his problems. But, I have already heard from a few

other people from the group that their child had reflux. Since this

is all so new to me I am not sure but I will be discussing it w/hhis

genetics specialist. His VSD has been associated w/blephs, and I

think his problems w/his ears and conductive hhearing loss.

Our son is the only one in the family w/blephs too!

> Hi ...Just had a question, You mentioned all the problems

that your

> son had as a baby...reflux...not sleeping through the

night...failure to

> thrive...etc...Do you think that is because he has blephs?...or was

this

> from other reasons?...Our son has blephs, only one in the family

who does?..

> Well so far he has been a dream, he has always been a great

sleeper, never

> been sick, just the odd cold, happy all the time! He has a smile

that

> lights up a room:)... So I was just curious as to what you mean, if

you

> associate all those things with having blephs! To us, he just has

narrow

> eyelids, nothing else...

>

> -- blepharophimosis new to the group

>

> Hello,

>

> After 5 years of doc's and people saying " there is something going

on

> w/your son but we can't put our finger on it " we have a diagnosis.

I

> just received the letter from our genetics doctor, he has BPES,

they

> are still unsure of the type, and both my husband and I are

> unaffected w/the gene.

>

> When he was a baby he NEVER slept through the night, was a poor

> feeder and had severe reflux. He was taken off all milk proteins

> which cleared him from all reflux medication. He was failure to

> thrive and both me and our pediatrician at the time both fought the

> stomach tube and won! Since his ptosis was the only thing

detected,

> although he had a murmur at birth, my pediatrician had enough

insight

> to say that he may have a syndrome, he just didn't know what kind,

so

> we were just happy he was finally over his severe reflux. He did

> very well for about 2 years. At 3 years old they heard the murmur

> again (wicked hard to detect even by his cardiologist) and had an

> irregular ekg and our new pediatrician (We moved to Mass) sent us

> straight to childrens hospital, he was diagnosed w/a VSD. Since

then

> he has had a tube removed from his ears, found to have conductive

> hearing loss, tubes put back in, and several procedures to

determine

> why he has a chronic cough. He has polyps on his vocal chords,

which

> he will need voice therapy for. And is once again having problems

> w/his tubes, his ENT and I see each other regularly!!

>

> His VSD seems to be closing on it's own...thankfully! BUT..he has

> been on medication to stop the racing of his heart, heartrate at

160

> at rest and he would get cold and clammy. The meds are working for

> this, he now has a second cardiologist who specializes in

> electrophysiology that sees him every 6 months.

>

> He was just prescribed glasses. His left eye is MUCH worse than

his

> right, his eyelids are not severely closed but I always get

comments

> from people everywhere I go at how tired he looks.

>

> I am happy to find a support group! I feel truly blessed that he

has

> only had a few surgeries and surgical procedures in his lifetime.

> And am very thankful that he is so active funny and doing so well

in

> school.

>

> I would love to correspond w/someone in the same situation with

me. '

>

> Thanks for listening to me babble on and on!!

>

> Kristyn

>

>

>

>

>

[Guest guest]

The VSD or ventrical septal defect, small hole in the bottom of the

heart, was only detected about 2 years ago. Although a murmur was

heard when he was born, it was not heard again until he was 3. Just

to let you know, his EKG was irregular and indicated a murmur, but

the cardiologist even had a hard time hearing it, it was easily

missed, and took her a LONG time to finally hear it. Now it is LOUD

and CLEAR which I was told means that it is closing and his

echocardiogram showed that it is closing on its own. Maybe your

daughters has already closed.

> what is VSD???

>

> -- Re: blepharophimosis new to the group

>

> Kristyn,

> My daughter also had severe reflux when she was younger. Is that

related to

> VSD? I had a nagging feeling the reflux was somehow connected to

Bleph and

> now I am pretty sure. You are I think the 3rd parent who's child

had reflux

> problems also. Now I am worried about the VSD She had her heart

checked

> when she was in the hospital she had a small murmur but the DR said

it was a

> pulmonary one and would heal itself and noone has heard it since.

She has no

> other problems.

>

>

>

[Guest guest]

When u were pregnant, did they find anything at the 18 weeks scan(2nd scan)...?I was told my baby had an echogenic cardiac focus(bright spot on the heart)....and also choroid plexus cysts(on the brain)...was told that together I could have baby with downs...but unlikely...the cysts almost always resolve themselves while in utero! which they did...come a scan we had at 33 weeks, the bright spot was still there though...he was checked for a heart murmer when he was born, but he was all good:) he was born with blephs instead...still wonder if there is a link in what they found at the scan!...could be...

-- blepharophimosis new to the group> > Hello,> > After 5 years of doc's and people saying "there is something going on > w/your son but we can't put our finger on it" we have a diagnosis. I > just received the letter from our genetics doctor, he has BPES, they > are still unsure of the type, and both my husband and I are > unaffected w/the gene. > > When he was a baby he NEVER slept through the night, was a poor > feeder and had severe reflux. He was taken off all milk proteins > which cleared him from all reflux medication. He was failure to > thrive and both me and our pediatrician at the time both fought the > stomach tube and won! Since his ptosis was the only thing detected, > although he had a murmur at birth, my pediatrician had enough insight > to say that he may have a syndrome, he just didn't know what kind, so > we were just happy he was finally over his severe reflux. He did > very well for about 2 years. At 3 years old they heard the murmur > again (wicked hard to detect even by his cardiologist) and had an > irregular ekg and our new pediatrician (We moved to Mass) sent us > straight to childrens hospital, he was diagnosed w/a VSD. Since then > he has had a tube removed from his ears, found to have conductive > hearing loss, tubes put back in, and several procedures to determine > why he has a chronic cough. He has polyps on his vocal chords, which > he will need voice therapy for. And is once again having problems > w/his tubes, his ENT and I see each other regularly!! > > His VSD seems to be closing on it's own...thankfully! BUT..he has > been on medication to stop the racing of his heart, heartrate at 160 > at rest and he would get cold and clammy. The meds are working for > this, he now has a second cardiologist who specializes in > electrophysiology that sees him every 6 months. > > He was just prescribed glasses. His left eye is MUCH worse than his > right, his eyelids are not severely closed but I always get comments > from people everywhere I go at how tired he looks. > > I am happy to find a support group! I feel truly blessed that he has > only had a few surgeries and surgical procedures in his lifetime. > And am very thankful that he is so active funny and doing so well in > school. > > I would love to correspond w/someone in the same situation with me. '> > Thanks for listening to me babble on and on!! > > Kristyn> > > > >

[Guest guest]

Nothing was wrong during pregnancy as far as showing up on the

ultrasound. I was told by several people that he looked like he had

downs when he was born though. But it was just because of the

ptosis.

> > Hi ...Just had a question, You mentioned all the problems

> that your

> > son had as a baby...reflux...not sleeping through the

> night...failure to

> > thrive...etc...Do you think that is because he has blephs?...or

was

> this

> > from other reasons?...Our son has blephs, only one in the family

> who does?..

> > Well so far he has been a dream, he has always been a great

> sleeper, never

> > been sick, just the odd cold, happy all the time! He has a smile

> that

> > lights up a room:)... So I was just curious as to what you mean,

if

> you

> > associate all those things with having blephs! To us, he just has

> narrow

> > eyelids, nothing else...

> >

> > -- blepharophimosis new to the group

> >

> > Hello,

> >

> > After 5 years of doc's and people saying " there is something

going

> on

> > w/your son but we can't put our finger on it " we have a

diagnosis.

> I

> > just received the letter from our genetics doctor, he has BPES,

> they

> > are still unsure of the type, and both my husband and I are

> > unaffected w/the gene.

> >

> > When he was a baby he NEVER slept through the night, was a poor

> > feeder and had severe reflux. He was taken off all milk proteins

> > which cleared him from all reflux medication. He was failure to

> > thrive and both me and our pediatrician at the time both fought

the

> > stomach tube and won! Since his ptosis was the only thing

> detected,

> > although he had a murmur at birth, my pediatrician had enough

> insight

> > to say that he may have a syndrome, he just didn't know what

kind,

> so

> > we were just happy he was finally over his severe reflux. He did

> > very well for about 2 years. At 3 years old they heard the

murmur

> > again (wicked hard to detect even by his cardiologist) and had an

> > irregular ekg and our new pediatrician (We moved to Mass) sent us

> > straight to childrens hospital, he was diagnosed w/a VSD. Since

> then

> > he has had a tube removed from his ears, found to have conductive

> > hearing loss, tubes put back in, and several procedures to

> determine

> > why he has a chronic cough. He has polyps on his vocal chords,

> which

> > he will need voice therapy for. And is once again having

problems

> > w/his tubes, his ENT and I see each other regularly!!

> >

> > His VSD seems to be closing on it's own...thankfully! BUT..he

has

> > been on medication to stop the racing of his heart, heartrate at

> 160

> > at rest and he would get cold and clammy. The meds are working

for

> > this, he now has a second cardiologist who specializes in

> > electrophysiology that sees him every 6 months.

> >

> > He was just prescribed glasses. His left eye is MUCH worse than

> his

> > right, his eyelids are not severely closed but I always get

> comments

> > from people everywhere I go at how tired he looks.

> >

> > I am happy to find a support group! I feel truly blessed that he

> has

> > only had a few surgeries and surgical procedures in his

lifetime.

> > And am very thankful that he is so active funny and doing so well

> in

> > school.

> >

> > I would love to correspond w/someone in the same situation with

> me. '

> >

> > Thanks for listening to me babble on and on!!

> >

> > Kristyn

> >

> >

> >

> >

> >

[Guest guest]

oh okay....I never got that he looked like downs when he was new born...may-be now I think people are thinking that!....The steers are what really get to me ha!....people are so rude...I know when someone doesn't look quite the same as the average joe...we all steer...but when its your baby, it hurts:(...People look at him in his stroller, then look straight up at me and my husband and son...I see it ALL the time!....I got a comment from a little boy...he asked if he was blind!...and said he looked funny! I didn't appreciate it I will tell you!...but then I get a real nice comment like a lady the other day...ethan was smiling at her, with his beautiful HUGE smile, and she said *look at that big beautiful smile*...I said he has a huge smile! she said the kind that makes your eyes water:)....isn't that just so nice!...thats makes my day, afetr he has been steered at so much...

-- blepharophimosis new to the group> > > > Hello,> > > > After 5 years of doc's and people saying "there is something going > on > > w/your son but we can't put our finger on it" we have a diagnosis. > I > > just received the letter from our genetics doctor, he has BPES, > they > > are still unsure of the type, and both my husband and I are > > unaffected w/the gene. > > > > When he was a baby he NEVER slept through the night, was a poor > > feeder and had severe reflux. He was taken off all milk proteins > > which cleared him from all reflux medication. He was failure to > > thrive and both me and our pediatrician at the time both fought the > > stomach tube and won! Since his ptosis was the only thing > detected, > > although he had a murmur at birth, my pediatrician had enough > insight > > to say that he may have a syndrome, he just didn't know what kind, > so > > we were just happy he was finally over his severe reflux. He did > > very well for about 2 years. At 3 years old they heard the murmur > > again (wicked hard to detect even by his cardiologist) and had an > > irregular ekg and our new pediatrician (We moved to Mass) sent us > > straight to childrens hospital, he was diagnosed w/a VSD. Since > then > > he has had a tube removed from his ears, found to have conductive > > hearing loss, tubes put back in, and several procedures to > determine > > why he has a chronic cough. He has polyps on his vocal chords, > which > > he will need voice therapy for. And is once again having problems > > w/his tubes, his ENT and I see each other regularly!! > > > > His VSD seems to be closing on it's own...thankfully! BUT..he has > > been on medication to stop the racing of his heart, heartrate at > 160 > > at rest and he would get cold and clammy. The meds are working for > > this, he now has a second cardiologist who specializes in > > electrophysiology that sees him every 6 months. > > > > He was just prescribed glasses. His left eye is MUCH worse than > his > > right, his eyelids are not severely closed but I always get > comments > > from people everywhere I go at how tired he looks. > > > > I am happy to find a support group! I feel truly blessed that he > has > > only had a few surgeries and surgical procedures in his lifetime. > > And am very thankful that he is so active funny and doing so well > in > > school. > > > > I would love to correspond w/someone in the same situation with > me. '> > > > Thanks for listening to me babble on and on!! > > > > Kristyn> > > > > > > > > >

[Guest guest]

Hi Kristyn, It sounds like you've had quite allot to deal with. We have a daughter with both BPES and Duane's Syndrome. She's turning the big 1 next week. She was actually a twin, but when I was 6 weeks pregnant, I lost her brother or sister with miscarriage. I had a huge heamatoma (sp?) which was growing at a rate faster than the babies, and was overtaking utero. Fortunately it dissolved at 3 months, and preg progressed normally. Our daughter Alyssa doesn't appear to have any other problems except sensitivity to light which goes with BPES, and sensitive hearing which goes with Duanes. We're so thankful for her...shes a real sweetie. Shes the only one also in our family with either syndromes.

She hasn't had any surgeries yet, but will in time. One of her older sisters now 12 years, had really bad reflux as a baby and had to be put on gaviscon to hold her milk down. I remember not wanting to go out because she would spew everywhere we went! and all over people it was embarrassing :-)

blepharophimosis new to the groupHello,After 5 years of doc's and people saying "there is something going on w/your son but we can't put our finger on it" we have a diagnosis. I just received the letter from our genetics doctor, he has BPES, they are still unsure of the type, and both my husband and I are unaffected w/the gene. When he was a baby he NEVER slept through the night, was a poor feeder and had severe reflux. He was taken off all milk proteins which cleared him from all reflux medication. He was failure to thrive and both me and our pediatrician at the time both fought the stomach tube and won! Since his ptosis was the only thing detected, although he had a murmur at birth, my pediatrician had enough insight to say that he may have a syndrome, he just didn't know what kind, so we were just happy he was finally over his severe reflux. He did very well for about 2 years. At 3 years old they heard the murmur again (wicked hard to detect even by his cardiologist) and had an irregular ekg and our new pediatrician (We moved to Mass) sent us straight to childrens hospital, he was diagnosed w/a VSD. Since then he has had a tube removed from his ears, found to have conductive hearing loss, tubes put back in, and several procedures to determine why he has a chronic cough. He has polyps on his vocal chords, which he will need voice therapy for. And is once again having problems w/his tubes, his ENT and I see each other regularly!! His VSD seems to be closing on it's own...thankfully! BUT..he has been on medication to stop the racing of his heart, heartrate at 160 at rest and he would get cold and clammy. The meds are working for this, he now has a second cardiologist who specializes in electrophysiology that sees him every 6 months. He was just prescribed glasses. His left eye is MUCH worse than his right, his eyelids are not severely closed but I always get comments from people everywhere I go at how tired he looks. I am happy to find a support group! I feel truly blessed that he has only had a few surgeries and surgical procedures in his lifetime. And am very thankful that he is so active funny and doing so well in school. I would love to correspond w/someone in the same situation with me. 'Thanks for listening to me babble on and on!! Kristyn

[Guest guest]

In a message dated 6/22/2004 11:04:29 AM Pacific Daylight Time,

mizzcrabbyazz@... writes:

HI, I am curious to know if anyone knows of any case of discoid

lupus, after being exposed to something that caused a rash only

after being in the building approximately 45 min, and it would

continue til being out of the building about the same time. 2

months after working in this place, and having the severe rash

everyday being there, I went into anaphalatic shock. Now, since

that time, I have always developed a rash while being outside, or

being hot. And of course, a overall feeling of sickness comes with

it. I had no clue what it was. But it all makes sense now, since

NEVER before being in that building did I ever have a problem. I

believe that whatever I was exposed to induced the discoid

lupus...Has anyone ever experienced anything like this, or heard of

it happening?

Carla

contact Dr. Doris Rapp or an environmental dr. of your choice, perhaps, for

this

http://drrapp.com/

It certainly ties in with the reading I have done regarding what sick

buildings can do.

[Guest guest]

In a message dated 6/22/2004 11:04:29 AM Pacific Daylight Time,

mizzcrabbyazz@... writes:

HI, I am curious to know if anyone knows of any case of discoid

lupus, after being exposed to something that caused a rash only

after being in the building approximately 45 min, and it would

continue til being out of the building about the same time. 2

months after working in this place, and having the severe rash

everyday being there, I went into anaphalatic shock. Now, since

that time, I have always developed a rash while being outside, or

being hot. And of course, a overall feeling of sickness comes with

it. I had no clue what it was. But it all makes sense now, since

NEVER before being in that building did I ever have a problem. I

believe that whatever I was exposed to induced the discoid

lupus...Has anyone ever experienced anything like this, or heard of

it happening?

Carla

contact Dr. Doris Rapp or an environmental dr. of your choice, perhaps, for

this

http://drrapp.com/

It certainly ties in with the reading I have done regarding what sick

buildings can do.

[Guest guest]

Carla, some of us with cfs or Lyme diagnoses are looking at a treatment protocol

called the marshall protocol. It was developed for sarcoidosis patients, but

makes sense for any type of autoimmune problem such as lupus. Check out this

site.

http://www.sarcinfo.com

or join this email group at . The Marshallprotocol.

a

HI, I am curious to know if anyone knows of any case of discoid

lupus, after being exposed to something that caused a rash only

after being in the building approximately 45 min, and it would

continue til being out of the building about the same time. 2

months after working in this place, and having the severe rash

everyday being there, I went into anaphalatic shock. Now, since

that time, I have always developed a rash while being outside, or

being hot. And of course, a overall feeling of sickness comes with

it. I had no clue what it was. But it all makes sense now, since

NEVER before being in that building did I ever have a problem. I

believe that whatever I was exposed to induced the discoid

lupus...Has anyone ever experienced anything like this, or heard of

it happening?

Carla

[Guest guest]

Carla, some of us with cfs or Lyme diagnoses are looking at a treatment protocol

called the marshall protocol. It was developed for sarcoidosis patients, but

makes sense for any type of autoimmune problem such as lupus. Check out this

site.

http://www.sarcinfo.com

or join this email group at . The Marshallprotocol.

a

HI, I am curious to know if anyone knows of any case of discoid

lupus, after being exposed to something that caused a rash only

after being in the building approximately 45 min, and it would

continue til being out of the building about the same time. 2

months after working in this place, and having the severe rash

everyday being there, I went into anaphalatic shock. Now, since

that time, I have always developed a rash while being outside, or

being hot. And of course, a overall feeling of sickness comes with

it. I had no clue what it was. But it all makes sense now, since

NEVER before being in that building did I ever have a problem. I

believe that whatever I was exposed to induced the discoid

lupus...Has anyone ever experienced anything like this, or heard of

it happening?

Carla

[Guest guest]

Go to the files section and click on Doctors, There is a PS in San

Fran. I don't know anything about him, but someone here must since

he is on our list.

Cricket

-- In , " holymary1974 "

<holymary1974@y...> wrote:

> hello,

>

> i just joined this support group, thank you for the invite patty.

>

> brief background: i got saline implants in 1998. about 3 years

ago

> (3 years post-surg) i started getting pain in my left wrist. it

felt

> work related so i tried everything even quitting work and

> arthroscopic surgery. unfortunately it just hurts even more now.

> however, along the way i started feeling areas of pain (sharp like

> needles and sometimes burning) in various parts of my body. first

in

> both elbows, along my right hamstring, and most recently both

knees

> and right heel (among other spots). it didn't bother me everyday,

> but lately it's pretty constant. doctors ruled everything out and

> left me with atypical fibromyalgia (b/c these points are not

tender

> to touch like the typical case). exercise worsens the pain, i've

had

> my share of sleepless nights. fortunately i haven't had the more

> severe symptoms, mostly just pain which has been difficult to cope

> with.

>

> so anyways, after seeing kacey long's segment on good morning

> america, a light bulb went off in my head. and now i'm hopeful

that

> i may have a second chance at a normal, active life. i just don't

> really know where to begin. i'm pretty sure the implants are the

> cause of all this, but i want to be sure before going for another

> operation.

>

> is there anyone that could recommend a good surgeon in the san

> francisco bay area? i've spoken to dr. feng's office in ohio and

> would love to have her treat me. however, i'd much rather stay

local

> for obvious reasons including any possible follow-ups or

> complications.

>

> thank you for reading this!

> lisa

[Guest guest]

,

I forgot to say welcome to the group. Its real quite today, everyone

must be out doing something, but they will be back. I glad you found

us.

Cricket

> hello,

>

> i just joined this support group, thank you for the invite patty.

>

> brief background: i got saline implants in 1998. about 3 years

ago

> (3 years post-surg) i started getting pain in my left wrist. it

felt

> work related so i tried everything even quitting work and

> arthroscopic surgery. unfortunately it just hurts even more now.

> however, along the way i started feeling areas of pain (sharp like

> needles and sometimes burning) in various parts of my body. first

in

> both elbows, along my right hamstring, and most recently both

knees

> and right heel (among other spots). it didn't bother me everyday,

> but lately it's pretty constant. doctors ruled everything out and

> left me with atypical fibromyalgia (b/c these points are not

tender

> to touch like the typical case). exercise worsens the pain, i've

had

> my share of sleepless nights. fortunately i haven't had the more

> severe symptoms, mostly just pain which has been difficult to cope

> with.

>

> so anyways, after seeing kacey long's segment on good morning

> america, a light bulb went off in my head. and now i'm hopeful

that

> i may have a second chance at a normal, active life. i just don't

> really know where to begin. i'm pretty sure the implants are the

> cause of all this, but i want to be sure before going for another

> operation.

>

> is there anyone that could recommend a good surgeon in the san

> francisco bay area? i've spoken to dr. feng's office in ohio and

> would love to have her treat me. however, i'd much rather stay

local

> for obvious reasons including any possible follow-ups or

> complications.

>

> thank you for reading this!

> lisa

[Guest guest]

Hi !

Welcome to the group.Another --I like that!

I wish I could recommend a doc in SF but don't know any.

I sympathize with your situation. I have joint/wrist, leg, feet hand pain too.

-Marieholymary1974 <holymary1974@...> wrote:

hello,i just joined this support group, thank you for the invite patty.brief background: i got saline implants in 1998. about 3 years ago (3 years post-surg) i started getting pain in my left wrist. it felt work related so i tried everything even quitting work and arthroscopic surgery. unfortunately it just hurts even more now. however, along the way i started feeling areas of pain (sharp like needles and sometimes burning) in various parts of my body. first in both elbows, along my right hamstring, and most recently both knees and right heel (among other spots). it didn't bother me everyday, but lately it's pretty constant. doctors ruled everything out and left me with atypical fibromyalgia (b/c these points are not tender to touch like the typical case). exercise worsens the pain, i've had my share of sleepless nights.

fortunately i haven't had the more severe symptoms, mostly just pain which has been difficult to cope with. so anyways, after seeing kacey long's segment on good morning america, a light bulb went off in my head. and now i'm hopeful that i may have a second chance at a normal, active life. i just don't really know where to begin. i'm pretty sure the implants are the cause of all this, but i want to be sure before going for another operation. is there anyone that could recommend a good surgeon in the san francisco bay area? i've spoken to dr. feng's office in ohio and would love to have her treat me. however, i'd much rather stay local for obvious reasons including any possible follow-ups or complications. thank you for reading this!lisa

[Guest guest]

Welcome to the group. I am from San Francisco bay area too, I live in

Idaho now. I had to go to Dr Feng also, because frankly I could not

find a single surgeon I could trust in the area. They all scared me

with the warnings of deformity and not removing the capsule, I was

sick and needed someone that would say Yes it is the implants, etc. I

needed that ya know. Anyhow I Found out through multiple people on

the internet that i spoke with that she was the absolute best at that

time I needed to hear that. I was very afraid(if you look at my

photos in the photo section)you will see why I was so afraid. So I

decided to Fly to Celveland and make a winter adventure trip out of

it, it was not a bad experience, and Dr Feng made the surgery allot

better than I ever imagined it would be. I also managed to see some

sites around the local area, the suburb of Pepperpike Ohio is very

upscale, tons of great places to eat, little malls, and big malls

everywhere, tons of hotels and places to stay that have deal esp in

the winter but also year round for Feng patients. I know it seems

really far to go, but I decided it was worth it to never look back

and have any regrets as far as removing those implants. I did not

want to be 2 or 3 years out thinking I should of gone to Feng and if

only etc etc. So that was my perspective and I am happy with my

scars, with my lift, with my improved health, etc.

I also got to see the rock n roll hall of fame and the NFL hall of

fame, so all the men in my family are jealous of me hee hee.

So it all worked out in the end for me.

I had allot of your symptoms, the hands and all that stuff, we are

all very similiar in those symptoms. They do get better, some of us

it takes longer than others and some of us get better really fast, it

really is hard to say why or how but the first thing and the most

important thing is to get a good explant done by a good Dr.

After that you can begin to heal.

I hope that something works out for you, closer to home would be nice

and we would love to have a good surgeon in the Bay Area on our list.

I know we have an Barnett on there, But I don't know how or

why he got on the list, because I have never met anyone that went to

him. I think that he must have removed someones implants at one time,

and it may be worth talking with him, but someone else told me he did

a bad job on something, I don't think it was breasts, but a nose or

facelift, I cannot recall, so I would be sure to ask the following

questions if you go to any surgeons anywhere.

1. will you remove the entire capsule, not leave ANYTHING BEHIND.

2.Can You do this en bloc with capsulectomy without using a crease

scar

3. What type of lifts do you use? (I personally would try to get a

lift that does not have a crease scar as it is really unessecary esp

in smaller chested women

4. Will you put it in writting that you will remove the entire

capsule.

5. Do you have photos of women that you have performed this procedure

on and how many have you done?

I cant think of anything else now. I know that allot of women want

them out so bad they do not mind going to a Dr who does not believe

implants cause illness. I personally did, I wanted one who believed

in illness from implants, who understood it, and who would support me

and make me feel that I was not crazy.

Those things matter more to some than to others and I think you can

get a good result with a dr that does not believe in illness, but is

that the way your going to feel comfortable?

that is the question I guess you have to ask yourself.

ok, I need to get moving here.

please ask away, anything at all, we are all here to help and to

support you.

PS I was from Redwood City California, are you near there?

I was born in SF and moved down the peninsula.

I liked it there, but it was becoming so crowded and busy and just

too many people, and so costyl, but all my family is there and I will

be there in July to visit them.

hugs

In , " holymary1974 " <holymary1974@y...>

wrote:

> hello,

>

> i just joined this support group, thank you for the invite patty.

>

> brief background: i got saline implants in 1998. about 3 years ago

> (3 years post-surg) i started getting pain in my left wrist. it

felt

> work related so i tried everything even quitting work and

> arthroscopic surgery. unfortunately it just hurts even more now.

> however, along the way i started feeling areas of pain (sharp like

> needles and sometimes burning) in various parts of my body. first

in

> both elbows, along my right hamstring, and most recently both knees

> and right heel (among other spots). it didn't bother me everyday,

> but lately it's pretty constant. doctors ruled everything out and

> left me with atypical fibromyalgia (b/c these points are not tender

> to touch like the typical case). exercise worsens the pain, i've

had

> my share of sleepless nights. fortunately i haven't had the more

> severe symptoms, mostly just pain which has been difficult to cope

> with.

>

> so anyways, after seeing kacey long's segment on good morning

> america, a light bulb went off in my head. and now i'm hopeful

that

> i may have a second chance at a normal, active life. i just don't

> really know where to begin. i'm pretty sure the implants are the

> cause of all this, but i want to be sure before going for another

> operation.

>

> is there anyone that could recommend a good surgeon in the san

> francisco bay area? i've spoken to dr. feng's office in ohio and

> would love to have her treat me. however, i'd much rather stay

local

> for obvious reasons including any possible follow-ups or

> complications.

>

> thank you for reading this!

> lisa

[Guest guest]

Your relative who is a psychiatrist could probably write you a script for LDN.

Be sure to use one of the reliable compounding pharmacies from the LDN website

homepage. Dr. Bihari uses Irmat in NY and many here who are not allergic to the

Avicel filler uses Skip's in Florida. Avicel is the filler Skip uses to make

the LDN release fast as LDN needs to be fast release. Skip only uses Avicel but

Irmat uses other fast release fillers, not just one particular filler like Skip

does.

My LDN site might be of help.

Low Dose Naltrexone Forum - Home

http://ldn.proboards3.com/index.cgi?

[Guest guest]

--- In low dose naltrexone , Vali Tamayo <valip@c...>

wrote:

I look

> forward to reading more from the group, especially from anyone who

has used

> Betseron or Copaxone and then gone to LDN treatment.

Hi, Vali. My 16 year old son was diagnosed with MS 3 1/2 years ago.

He used Avonex for 1 year with minimal flu like symptoms but

continued to have exacerbations and suffered from depression while

using it. He was then switched to Rebif for 9 months and suffered

SEVERE depression, along with the painful injections and the

medication just making him feel like crap in general. He started LDN

in June of this year, after I spent 6 months driving this bunch crazy

trying to find out everything I could about it!

He has done wonderfully, Vali, and I would not switch him back to the

interferons under any circumstances. All of the symptoms that were

contributed to MS while he was on the interferons were truly caused

by the interferons, as far as I am concerned. If you want to know

anything more specific than what I have told you, please feel free to

ask. I read the digests daily, or you can email me privately. This

is a great group, and you will find all the answers you need here! I

will warn you, though. Don't expect to get a script from your

neuro. Try a good gp, preferably one you have known for awhile and

who trusts your judgement. Take care!

Kim

[Guest guest]

The problem with my cousin the psychiatrist is that she is only willing

to believe things that she reads in medical journals. To her, if she

can't find it in a medical journal she's just not going to believe it.

And since there have not been clinical trials of LDN for use with MS

patients, she's not going to be able to find anything about it in a

medical journal, and so she's not going to believe it. Also, I live in

New Mexico and she lives in Boston, so there is also that slight

logistical problem. That could probably be overcome, but her blind trust

in medical journals as the repositories of all true knowledge can not.

I'm going to bring LDN up with my neurologist when I see him, and I'll

bring it up with whatever doctor does my routine yearly gynecological

exam, too. The problem there is that my gyno/gp moved away so I'm going

to have to find a new one for my yearly this year. I'll get it all worked

out sooner or later, but I suspect that I'm going to go through a bit of

frustration first.

Vali

At 03:06 PM 12/29/2004 +0000, you wrote:

Your relative who is a

psychiatrist could probably write you a script for LDN. Be sure to

use one of the reliable compounding pharmacies from the LDN website

homepage. Dr. Bihari uses Irmat in NY and many here who are not

allergic to the Avicel filler uses Skip's in Florida. Avicel is the

filler Skip uses to make the LDN release fast as LDN needs to be fast

release. Skip only uses Avicel but Irmat uses other fast release

fillers, not just one particular filler like Skip does.

My LDN site might be of help.

Low Dose Naltrexone Forum - Home

http://ldn.proboards3.com/index.cgi?

[Guest guest]

Hi Rob,

Welcome! I just joined this group as well. We are

adopting a little boy from S. Korea with bleph. He

just underwent his first surgery there, but I haven't

gotten to see pictures yet. I have already learned so

much from this group - you are in a good place. BTW -

my husband is a UT grad.

April

Wife to Jon

Mommy to three little blessings from Korea:

Mira (4)

Misha (2)

Micah (almost 3) waiting to come home!

--- rob hall <rnhall180@...> wrote:

>

> Blepharophimosis runs in my family. I am the 4th

> generation. Until

> now my family just told me there was " asian " blood

> in the family.

> My mom had surgery for the condition back in the

> 60's and had poor

> results. I am 32 now and beginnig to suffer neck

> and forhead strain

> from holding my head up so I can see. I'm scared to

> death about the

> surgery. I went to a Dr. in CA when I lived there

> last year and was

> nervous about having him perform the procedure. He

> mentioned " harvested " tissue. I'm not sure what to

> do now. How

> common is this procedure? Sorry for the ramble.

> It's rather

> emotional for me looking at the photos. I thought

> my family was the

> only one. God Bless you all.

>

> Rob Hall

> Austin TX

>

>

>

>

[Guest guest]

Rob, I would check with several surgeons before doing anything. My kids operations were completely painless and they recovered so well. It was so worth having done. In the long run you will be much more comfortable than you are now. Not all surgeons with do the "harvested tissue" some will lift and open whatyou have now and it does help.......I am from NY ....and don;t know anyone in your state good luck in your search. You may want to call some of the major hospitals and ask for a reference. Sharon rob hall <rnhall180@...> wrote:

Blepharophimosis runs in my family. I am the 4th generation. Until now my family just told me there was "asian" blood in the family. My mom had surgery for the condition back in the 60's and had poor results. I am 32 now and beginnig to suffer neck and forhead strain from holding my head up so I can see. I'm scared to death about the surgery. I went to a Dr. in CA when I lived there last year and was nervous about having him perform the procedure. He mentioned "harvested" tissue. I'm not sure what to do now. How common is this procedure? Sorry for the ramble. It's rather emotional for me looking at the photos. I thought my family was the only one. God Bless you all.Rob Hall Austin TX

[Guest guest]

Hi Rob,

Welcome to the group:) Have you not had any surgeries at all? Don't be scared of the operation....just look at the pix of all those little faces that have been through the procedure and come out of it just fine:) You'll be great! We have a beautiful wee guy named Ethan, he has bleph, 1st in either family? he has just turned two in Jan 05, (pix of him under ethan...wearing trh epumpkin suit:) he has had no surgery as yet, and won't until he is about 4, before school hopefully:) Do you have any children? If so do they have bpes as well?

Again, welcome, and talk soon....

Leanne and family NZ

-- Re: blepharophimosis new to the group

Rob, I would check with several surgeons before doing anything. My kids operations were completely painless and they recovered so well. It was so worth having done. In the long run you will be much more comfortable than you are now. Not all surgeons with do the "harvested tissue" some will lift and open whatyou have now and it does help.......I am from NY ....and don;t know anyone in your state good luck in your search. You may want to call some of the major hospitals and ask for a reference. Sharon rob hall <rnhall180@...> wrote: Blepharophimosis runs in my family. I am the 4th generation. Until now my family just told me there was "asian" blood in the family. My mom had surgery for the condition back in the 60's and had poor results. I am 32 now and beginnig to suffer neck and forhead strain from holding my head up so I can see. I'm scared to death about the surgery. I went to a Dr. in CA when I lived there last year and was nervous about having him perform the procedure. He mentioned "harvested" tissue. I'm not sure what to do now. How common is this procedure? Sorry for the ramble. It's rather emotional for me looking at the photos. I thought my family was the only one. God Bless you all.Rob Hall Austin TX