Re: Limb Lengthening -- it's not cosmetic

November 19, 2002

Actually, braces CAN be for a medical necessity. Such as myself.. I can't

chew properly because of the way my teeth are. Which then will later cause

TMJ and so on. (jaw problems).. I would rather go WITHOUT braces, but I NEED

them to prevent further problems with my mouth.

November 19, 2002

Okay, here we go again. Despite many claims that it is, limb lengthening

for dwarfism is not cosmetic. For starters insurance would not pay for it

if it were strictly cosmetic and they do (at the same time they refuse to

pay for people over five feet who just want to be taller). More

importantly, aside from ELL adding around ten to twelve inches to ones

height, enabling them to reach the top shelf in a store, drive a car

without extension pedals and a plethora of other things, it fixes or helps

to alleviate many of the deformities that LPs have. It can fix the varus

or valgus of the tibia, with a gradual approach, allowing for a more

precise correction which in turn greatly reduces the chance of nerve

problems and when they lengthen the femurs they attend to the fixed flexion

deformity of the hips reducing lordosis, which in turn decreases the chance

of stenosis. Also, by realigning the bones the chance of getting arthritis

is reduced.

The analogy to Roe v. Wade is an interesting one, and unfortunately I think

in many ways a correct one. I say unfortunately because in the end it is

only LPs who suffer. I know I am pretty much alone in this opinion, but I

think the time has more than come for LPA to look into all doctors

performing this procedure and separate the wheat from the chaff, the

skilled surgeons who are offering safe treatment to those LPs who want it,

from the hacks who have no business performing this surgery on

LPs. Without this guidance people are left to search for surgeons on their

own and their lives can be changed forever because they found someone who

sounded good to them, but did not know about LPs, did not know that the

only real candidates for complete EEL are achons, hypochons, and people

with CHH. I hope LPA one day will come to understand this, but I have my

doubts, not so much about the understanding for I think many do see my

point, but about an actual willingness to do what needs to be done. It

would take courage given how many people react to the basic idea of ELL,

but as the late Senator Everett Dirksen said when he was convincing his

Republican colleagues to join with Northern Democrats against the

Dixiecrats and vote for the Civil Rights Act of 1964, " There is no force so

powerful as an idea whose time has come. " Gillian.

November 19, 2002

Gillian does bring up a good point for LPA to consider if it hasn't

already and that is, " I think the time has more than come for LPA to

look into all doctors performing this procedure and separate the

wheat from the chaff, the skilled surgeons who are offering safe

treatment to those LPs who want it, from the hacks who have no

business performing this surgery on LPs. Without this guidance

people are left to search for surgeons on their own and their lives

can be changed forever because they found someone who sounded good to

them, but did not know about LPs, did not know that the only real

candidates for complete EEL are achons, hypochons, and people with

CHH. I hope LPA one day will come to understand this.... "

Now, whether all of us, some of us or just a few of us see ELL as

being cosmetic or medically beneficial to us that I don't think we

will ever change as that is just an opinion as to how one feels on

the issue. However, like Gillian, I also believe that the more

informed we are on this option and on the doctors who peform it, the

better we will be to decide whether or not it would benefit us

medically if a few of us so choose it. Personally, I would not choose

it, but I wouldn't be against another lp who did and if they did I

would want them to have the most up to date information that is

available for them out there so that everything goes right for them.

Something to chew on, especially for those who deem ELL as being

cosmetic only, is to ask yourself this, " Did you elect to have braces

growing up? " Nooooo, I don't mean A.F.O.'s or foot braces which are a

medical necessity for a few of us, but those for your teeth.

Technically speaking, braces are not a medical necessity either.

Afterall if one chooses NOT to have braces their lifespan will still

be as long, their teeth will still be as white as braces only " align "

teeth they don't whiten them and yes, they will still be able to chew

and swallow their food as hundreds of millions do daily elsewhere in

the world without them. So, before any of us condemns those lp's who

have chosen on their own to have ELL done, you might better rip those

braces out because you had also something " done " to you for the same

reason you allege they had ELL.

Lastly, maybe it's time we change our membership requirement in LPA

from 4'10 " and under due to a medical condition to that PLUS this:

4'10 " and over due to ELL because we may be shutting out a group of

people who I've already seen on this list profess and admit that ELL

did NOT cure them of their dwarfism and that they still very much

want to be a part of us, but some of them feel shut out by a few of

us over something they chose on their own. And yes, maybe a few in

their group had ELL done because they hated themselves and/or their

dwarfism (only saying this as part of my defense of still including

them, not saying that any TRULY felt this way, but even if a few of

them did), shouldn't we accept and love them anyway, regardless of

whatever reason they chose on their own to have it done? And even IF

what they chose was an error on their part? Because haven't we all

made errors in our lives? Some of them even being major ones? Just

asking and thinking as usual.

luv, grady

November 19, 2002

Good point Ames. One that I didn't think of, that being TMJ and/or

other future jaw problems arising from one NOT having braces.

However, was it the braces only that corrected that problem and/or

additional orthodontic work besides the braces alone?

In any case, braces or ELL, that same argument could also be used

saying that ELL can be of medical help or of necessity for future

orthopedic problems in some of us such as arthritus and other things

Gillian stated before in her post. That ELL helps and is not of a

cosmetic nature as braces can also be of a medical help for some.

I still agree with Gillian, although not with her decision which was

her own becuase I wouldn't chosen it myself, but with the idea that

it's better to be informed of the ELL procedures out there, the

doctors performing such and yes, even the medical risks involved if

one of us so chooses to have it done rather than having nothing

available for us to review just because a few of us are adamantly

against it and we wouldn't have chosen it for ourselves.

I just think, regardless of the personal " feelings " towards ELL out

there by ANY of us, pro or con, I know the more educated the LP is on

this subject the better they will be to make a decision concerning

it. Because information on it enlightens me, not people feelings at a

given moment which tends to change as much as the sunrise does to

sunset.

My opinion only.

luv, grady

November 19, 2002

FYI--

The below statement was presented to the LPA Medical Board (MAB) in Salt

Lake last July.

We are making small tweaks to the wording before presenting for a final

vote-- After this official position is approved, LPA plans to be more

forthcoming and accurate (Although Not selling, or any perception of

Selling) in presenting information about ELL to it's membership. i.e. the

best medical approaches, Doctors etc.

PROPOSED -- LPA Official Statement of Position on Extended Limb Lengthening

(ELL)

LPA, Inc., is dedicated to the support and advocacy of short-statured

individuals. One aspect of that support is to provide a balanced and

accurate resource of medical data and information, so that individuals can

make informed decisions about medical procedures and treatments. To that

end, LPA takes the following position on ELL.

1.. ELL is a surgical procedure with potential risks and benefits.

2.. LPA will provide accurate and balanced information on ELL, both pro

and con, so that patients and their families can make informed decisions.

This includes allowing both proponents and opponents of ELL to disburse

information through LPA.

3.. LPA will provide warm and open membership access for those members who

choose to undergo the ELL procedure.

4.. LPA will resist the marketing of ELL purely for cosmetic purposes and

focus on its medical advantages and teaching social acceptance of short

stature for what it is.

**** END OF ELL PROPOSED STATEMENT ***

>

> ===

>

November 19, 2002

.. I know I am pretty much alone in this opinion, but I

think the time has more than come for LPA to look into all doctors

performing this procedure and separate the wheat from the chaff, the

skilled surgeons who are offering safe treatment to those LPs who want

it,

from the hacks who have no business performing this surgery on

LPs. Without this guidance people are left to search for surgeons on

their

own and their lives can be changed forever because they found someone who

sounded good to them, but did not know about LPs, did not know that the

only real candidates for complete EEL are achons, hypochons, and people

with CHH. I hope LPA one day will come to understand this, but I have my

doubts, not so much about the understanding for I think many do see my

point, but about an actual willingness to do what needs to be done

Gillian and all

For Many, Many years , LPA through it's Medical Advisory Board has

supported the research of ELL. One of our own , Dr. Rimoin , has

been doing ELL with a controlled number of patients and monitoring the

long term effects of the procedure. Dr. Rimoin reported out to the MAB

and officers for several years on his work. . .complete with status

reports and pictures etc. I don't know what t he status of his work is ,

because it's been since I was president when I attended the meetings, but

to say that LPA as an organization does not support the process , I

believe is incorrect. There have been. . .and many there still are. .

..many long term questions about ELL AS THERE ARE WITH ANY NEW MEDICAL

PROCEDURE. I'm glad for you that ELL has been a positive part of your

life and admire your efforts to educate people on the process.

Marge

November 19, 2002

> FYI--

>

> The below statement was presented to the LPA Medical Board (MAB)

in Salt

> Lake last July.

>

> We are making small tweaks to the wording before presenting for a

final

> vote-- After this official position is approved, LPA plans to be

more

> forthcoming and accurate (Although Not selling, or any perception of

> Selling) in presenting information about ELL to it's membership.

i.e. the

> best medical approaches, Doctors etc.

>

> PROPOSED -- LPA Official Statement of Position on Extended Limb

Lengthening

> (ELL)

>

> LPA, Inc., is dedicated to the support and advocacy of short-

statured

> individuals. One aspect of that support is to provide a balanced and

> accurate resource of medical data and information, so that

individuals can

> make informed decisions about medical procedures and treatments. To

that

> end, LPA takes the following position on ELL.

>

> 1.. ELL is a surgical procedure with potential risks and benefits.

> 2.. LPA will provide accurate and balanced information on ELL,

both pro

> and con, so that patients and their families can make informed

decisions.

> This includes allowing both proponents and opponents of ELL to

disburse

> information through LPA.

> 3.. LPA will provide warm and open membership access for those

members who

> choose to undergo the ELL procedure.

> 4.. LPA will resist the marketing of ELL purely for cosmetic

purposes and

> focus on its medical advantages and teaching social acceptance of

short

> stature for what it is.

> **** END OF ELL PROPOSED STATEMENT ***

>

I guess my other post did not make it up here, so I guess Ill have to

write the entire thing over again. This is in regards to ELL. I

was " " who was on for a very short time on CBS Sunday Morning.

I just have a comment to make towards what Dr. Ain had to say about

the procedure. First of all I think that it was inappropriate to say

that you can die from this procedure or lose a limb. You cannot die

from actually getting your limbs lengthened. What you can die from is

the anesthesia. But this is not the only surgery that requires

anesthesia, obviously. Almost any orthopedic surgery would require

this. You can die from the gas you get when you get your teeth

pulled. About losing the limb.......if anything Dr. Paley and his

team save people from having to get their limbs amputated. The fact

that everyone says that it is very painful. Ok I will admit there is

pain involved, I know from personal experience. But people today act

as if there is nothing that there can be done about it. Pain meds are

perscribed and I only had to use mine for the first 2 months. The

pain is nowhere near as bad as people say it is.

In regards to this statement.....2.)LPA will provide accurate and

balanced information on ELL, both pro and con, so that patients and

their families can make informed decisions. This includes allowing

both proponents and opponents of ELL to disburse information through

LPA. I was not too succesful with that a few years ago. My mother

struggled to find information on ELL and the LPA was one of the first

places she turned too. They simply said that it is not recommended

and she was turned away. I have talked to various people from LPA and

they have told me that I have made the wrong decision and that I will

eventually regret it. Sounds to me like they are not providing

accurate or balanced info. I don't feel welcomed into the LPA either.

I was actually thinking about going to an LPA convention in Boston

but I felt like I would not be welcomed.

People say that this procedure is cosmetic, and yet I still don't

understand why this is so. LP's think that we go through this

procedure just for the height. No Way! I have gotten so much out of

this I cannot even find words to explain it. They say that it changes

who you are. I am a little person and I always will be. I am still

petite and I have all of the features that an LP would have. If you

saw CBS you would know what I am talking about. My hands are tiny, my

feet are tiny, I have the facial features too. But that is not even

the point. What matters the most is that I am an LP at heart and I

would never want to change who I am.

November 19, 2002

You're a brave girl and it's a shame that the group who should

be the most accepting of your decision is not.

If this had been made available to me at your age I would have done

the same, no second thoughts. The heck with what any group thought,

other's narrowmindedness has never been the deciding factor in my

life. It would have made so many things easier to deal with. No matter

how hard we try, we are still a minority and the world is not going to

make major adjustments to make our lives easier. Not for a very long

time anyway, so why not do what we can do for ourselves. It's not

about body image, it's about overcoming some of the restrictions.

If you make it to Boston I'd love to meet you, the coke/pepsi is on me

and we can share " hospital stories " .

-- In dwarfism@y..., " DeAndrade " <lilkrissysl04@h...> wrote:

>

> > FYI--

> >

> > The below statement was presented to the LPA Medical Board (MAB)

> in Salt

> > Lake last July.

> >

> > We are making small tweaks to the wording before presenting for a

> final

> > vote-- After this official position is approved, LPA plans to be

> more

> > forthcoming and accurate (Although Not selling, or any perception

of

> > Selling) in presenting information about ELL to it's membership.

> i.e. the

> > best medical approaches, Doctors etc.

> >

> > PROPOSED -- LPA Official Statement of Position on Extended Limb

> Lengthening

> > (ELL)

> >

> > LPA, Inc., is dedicated to the support and advocacy of short-

> statured

> > individuals. One aspect of that support is to provide a balanced

and

> > accurate resource of medical data and information, so that

> individuals can

> > make informed decisions about medical procedures and treatments.

To

> that

> > end, LPA takes the following position on ELL.

> >

> > 1.. ELL is a surgical procedure with potential risks and

benefits.

> > 2.. LPA will provide accurate and balanced information on ELL,

> both pro

> > and con, so that patients and their families can make informed

> decisions.

> > This includes allowing both proponents and opponents of ELL to

> disburse

> > information through LPA.

> > 3.. LPA will provide warm and open membership access for those

> members who

> > choose to undergo the ELL procedure.

> > 4.. LPA will resist the marketing of ELL purely for cosmetic

> purposes and

> > focus on its medical advantages and teaching social acceptance of

> short

> > stature for what it is.

> > **** END OF ELL PROPOSED STATEMENT ***

> >

>

> I guess my other post did not make it up here, so I guess Ill have

to

> write the entire thing over again. This is in regards to ELL. I

> was " " who was on for a very short time on CBS Sunday

Morning.

>

> I just have a comment to make towards what Dr. Ain had to say about

> the procedure. First of all I think that it was inappropriate to say

> that you can die from this procedure or lose a limb. You cannot die

> from actually getting your limbs lengthened. What you can die from

is

> the anesthesia. But this is not the only surgery that requires

> anesthesia, obviously. Almost any orthopedic surgery would require

> this. You can die from the gas you get when you get your teeth

> pulled. About losing the limb.......if anything Dr. Paley and his

> team save people from having to get their limbs amputated. The fact

> that everyone says that it is very painful. Ok I will admit there is

> pain involved, I know from personal experience. But people today act

> as if there is nothing that there can be done about it. Pain meds

are

> perscribed and I only had to use mine for the first 2 months. The

> pain is nowhere near as bad as people say it is.

>

> In regards to this statement.....2.)LPA will provide accurate and

> balanced information on ELL, both pro and con, so that patients and

> their families can make informed decisions. This includes allowing

> both proponents and opponents of ELL to disburse information through

> LPA. I was not too succesful with that a few years ago. My mother

> struggled to find information on ELL and the LPA was one of the

first

> places she turned too. They simply said that it is not recommended

> and she was turned away. I have talked to various people from LPA

and

> they have told me that I have made the wrong decision and that I

will

> eventually regret it. Sounds to me like they are not providing

> accurate or balanced info. I don't feel welcomed into the LPA

either.

> I was actually thinking about going to an LPA convention in Boston

> but I felt like I would not be welcomed.

>

> People say that this procedure is cosmetic, and yet I still don't

> understand why this is so. LP's think that we go through this

> procedure just for the height. No Way! I have gotten so much out of

> this I cannot even find words to explain it. They say that it

changes

> who you are. I am a little person and I always will be. I am still

> petite and I have all of the features that an LP would have. If you

> saw CBS you would know what I am talking about. My hands are tiny,

my

> feet are tiny, I have the facial features too. But that is not even

> the point. What matters the most is that I am an LP at heart and I

> would never want to change who I am.

>

November 20, 2002

At 12:27 AM +0000 11/20/02, DeAndrade wrote:

>I just have a comment to make towards what Dr. Ain had to say about

>the procedure. First of all I think that it was inappropriate to say

>that you can die from this procedure or lose a limb. You cannot die

>from actually getting your limbs lengthened. What you can die from is

>the anesthesia. But this is not the only surgery that requires

>anesthesia, obviously.

Just one quibble. With ELL, you can die from a fat embolism breaking

loose during the stretching process. This would be an exceedingly

rare complication, but it is specific to ELL.

Dan Kennedy

November 20, 2002

>

> >I just have a comment to make towards what Dr. Ain had to say about

> >the procedure. First of all I think that it was inappropriate to

say

> >that you can die from this procedure or lose a limb. You cannot die

> >from actually getting your limbs lengthened. What you can die from

is

> >the anesthesia. But this is not the only surgery that requires

> >anesthesia, obviously.

>

> Just one quibble. With ELL, you can die from a fat embolism

breaking

> loose during the stretching process. This would be an exceedingly

> rare complication, but it is specific to ELL.

>

> Dan Kennedy

Maybe this is so but as far as I know Dr. Paley has never had anyone

lose a leg or die from the procedure. It was inappropriate for Dr.

Ain to say this because he doesn't specialize in ELL. If he doesn't

agree with it thats fine. Another thin I dont get is that in a

previous documentary he said that he would allow his daughter a,

I think that is her name, to get the surgery if that was her

decision. Why now is he all of the sudden going totally against this?

November 20, 2002

My understanding of what Dr. Ain said in both documentaries is that he

doesn't believe in it and wouldn't want to change the way he is. In regards

to his daughter, if the time came and SHE wanted the procedure done, it

would be HER choice. One thing Dr. Ain emphasized on the recent documentary

is that many of the individuals having ELL done were young and born to

average size parents. There leaves question as to whether or not the

decision to have the procedure was really the child's or the parents.

Personally, I don't understand how young teen is knowledgeable to make a

such life changing decision.

Just my two cents

Barbara

>

>>

>>> I just have a comment to make towards what Dr. Ain had to say about

>>> the procedure. First of all I think that it was inappropriate to

> say

>>> that you can die from this procedure or lose a limb. You cannot die

>>> from actually getting your limbs lengthened. What you can die from

> is

>>> the anesthesia. But this is not the only surgery that requires

>>> anesthesia, obviously.

>>

>> Just one quibble. With ELL, you can die from a fat embolism

> breaking

>> loose during the stretching process. This would be an exceedingly

>> rare complication, but it is specific to ELL.

>>

>> Dan Kennedy

>

> Maybe this is so but as far as I know Dr. Paley has never had anyone

> lose a leg or die from the procedure. It was inappropriate for Dr.

> Ain to say this because he doesn't specialize in ELL. If he doesn't

> agree with it thats fine. Another thin I dont get is that in a

> previous documentary he said that he would allow his daughter a,

> I think that is her name, to get the surgery if that was her

> decision. Why now is he all of the sudden going totally against this?

>

> ===

>

November 20, 2002

I want to respond to a couple of things that have been raised in various

posts over the past two days.

First, is absolutely correct, Dr. Paley and Dr. Herzenberg have

never had a patient die from a fat embolism. Yes, this is risk, but it is

a risk in any procedure that requires one to break the bone (i.e. the same

risk applies in any procedure one has done to straighten their legs). For

Dr. Ain to list death as one of the key complications is very unfair, not

even the worst of the ELL surgeons have ever killed someone, to my

knowledge. More appropriate complications to raise are nerve damage, pin

and bone infections, and muscle contractures. These complications are real

and if you do not have a surgeon who knows what he is doing they could

become lasting side effects.

Second, I am fully aware of the work Dr. Rimoin and Dr. Isaacson have been

doing out in California and I also know they are both members of the

MAB. This is a good thing, but the technique they use, the Villiarubius

(sp?) method is very different from the Ilizarov method which is practiced

by the majority of ELL surgeons in this country, not to mention ISKD. If

you are open to what Dr. Rimoin and Dr. Isaacson do, why be so closed

minded about Dr. Paley, Dr. Herzenberg, Dr. Rozbruch, Dr. Dahl and the

rest. It makes no sense to me. Dr. Paley has offered to present his

results to members of the MAB and the Executive Board, where he would have

patients at all levels of treatment plus others who are at various years

post-op, including myself and my results and over ten years old, my tibias

almost fourteen. Also, since I am the first person in North America to

complete all three stages of this procedure, I would venture to guess not

many of Dr. Rimoin's results are much older than mine. Don't get me wrong,

I think it is good that LPA is working with Dr. Rimoin and Dr. Isaacson,

but why exclude Dr. Paley, Dr. Herzenberg, Dr. Dahl and Dr. Rozbruch? Why

not invite other surgeons to share their data? Unless there is some

special arrangement between LPA and Dr. Rimoin that I am missing, I cannot

figure it out.

Finally, I welcome the statement the Executive Board is debating right now,

but I have to ask if they have asked for input from anyone who actually has

real life experiences with ELL or do they plan to as they move forward if

and when this is ever approved? Just curious.

Gillian.

=====================

Few men are willing to brave the disapproval of their fellows, the censure

of their colleagues, the wrath of their society. Moral courage is a rarer

commodity than bravery in battle or great intelligence. Yet it is the one

essential, vital quality of those who seek to change a world which yields

most painfully to change.

F. Kennedy

November 21, 2002

Jianna is only 12 and is beggign for the surgery. In her case there is a

valid point for it...Her arms are very bowed and causing her a lot of pain

due to the madelung deformity. She woudl have it done to alleviate that

which is going to get worse and not for the lengthening...the straightening

IF it is possible which we do not know at this time. However, I am more

concerned that she accept herself for who she is where she is than I am for

the cosmetics changes it woudl bring. We have had some pretty emotional

discourses about this...Puberty is hell in an average kid's life but for one

like this its worse because society puts such a prize on supernormalcy.

Sometimes the emotional need for these things outweighs the biological

need....

Apryl

November 21, 2002

Yes it is true that most of the LPs who have chosen to do this have been

born to two average height parents, but that does not mean we are incapable

of making this decision. As I have said before, for me it was strictly an

issue of function. When you're thirteen it's true, you do not need to

worry about the necessities of daily living. If you're in a store you just

say " Mom can you get that for me " and your parents are always the ones to

drive you somewhere. But when I heard about this I started thinking ahead

to the time in my life that Mom and Dad would not be around all the time

and would have to do all this on my own. Would I manage, of course, but it

would make life a lot easier if I did this. Also, I knew this would not

change who I am. Four feet or five feet, I would still be the same

internally so I figured if I could take advantage to what science and

technology and medicine had to offer to make my life functionally

easier. I know some like to search for a negative reason that forced us to

do this, our parents, kids at school, we could not accept what we are, we

wanted to blend in with average society, whatever, but it is not

there. Ask why she did this, ask anyone who is actually brave

enough to share their thoughts and experiences with this group knowing the

response they will likely get. It's gotten better since I started posting

four or so years ago, but I fully understand why many LPs who choose ELL

have little to nothing to do with the LP community after. Acceptance is

the most important thing, provided you have not undergone ELL. Gillian.

November 21, 2002

Hi, Apryl --

One thing you *might* want to look into is orthopedic surgery to

lengthen and straighten Jianna's arms. ELL involves lengthening the

lower legs, and upper legs, and the upper arms, and the arms are by

far the easiest part of the surgery to do. I know of one orthopedist

who's been treating patients with dwarfism for years, and who

believes that there may well be considerable merit in doing ELL for

the arms only.

Dan Kennedy

At 9:00 AM -0500 11/21/02, AngelsRTru@... wrote:

>Jianna is only 12 and is beggign for the surgery. In her case there is a

>valid point for it...Her arms are very bowed and causing her a lot of pain

>due to the madelung deformity. She woudl have it done to alleviate that

>which is going to get worse and not for the lengthening...the straightening

>IF it is possible which we do not know at this time. However, I am more

>concerned that she accept herself for who she is where she is than I am for

>the cosmetics changes it woudl bring. We have had some pretty emotional

>discourses about this...Puberty is hell in an average kid's life but for one

>like this its worse because society puts such a prize on supernormalcy.

>Sometimes the emotional need for these things outweighs the biological

>need....

>

>Apryl

November 21, 2002

--- Gillian Mueller wrote:

> I want to respond to a couple of things that have been raised in

various posts over the past two days. For Dr. Ain to list death as

one of the key complications is very unfair,

Gillian --

Most surgeons list death as a possible outcome in ALL major

surgeries. I was told it was a possibility during both of my

decompressions. I wouldn't take this as a slight towards this

particular procedure.

Rose

November 21, 2002

Rose: I understand that death is always an outcome in any procedure,

it was just the way Dr. Ain said it (and I'm not sure if you saw the

show) that seemed to imply this has happened at least a couple of

times and that fact should stop you from doing this that bothered

me. Death is always a risk, life in general is a risk, but I think

it is long past time for the top LP surgeons and the top ELL surgeons

to come together and discuss the potential risks of all this and

start to communicate to help LPs instead of just going on talk shows

and saying you should not do this because you could die or lose your

leg. Those kind of comments help no one. Gillian.

> Gillian --

> Most surgeons list death as a possible outcome in ALL major

> surgeries. I was told it was a possibility during both of my

> decompressions. I wouldn't take this as a slight towards this

> particular procedure.

>

> Rose

November 21, 2002

I've talked with Dr. Ain about this, and I think it's fair to say

that he considers the risk of death far more unacceptable in a

procedure that truly might be thought of as cosmetic, as opposed to

the risk of death in, for example, a spinal-decompression operation

designed to reverse paralysis.

Dan

At 5:17 PM +0000 11/21/02, Gillian Mueller wrote:

>Rose: I understand that death is always an outcome in any procedure,

>it was just the way Dr. Ain said it (and I'm not sure if you saw the

>show) that seemed to imply this has happened at least a couple of

>times and that fact should stop you from doing this that bothered

>me. Death is always a risk, life in general is a risk, but I think

>it is long past time for the top LP surgeons and the top ELL surgeons

>to come together and discuss the potential risks of all this and

>start to communicate to help LPs instead of just going on talk shows

>and saying you should not do this because you could die or lose your

>leg. Those kind of comments help no one. Gillian.

>

>> Gillian --

>> Most surgeons list death as a possible outcome in ALL major

>> surgeries. I was told it was a possibility during both of my

>> decompressions. I wouldn't take this as a slight towards this

>> particular procedure.

>>

> > Rose

November 21, 2002

How do you know limb lengthening was specifically designed to make people

taller?? How do you know it wasn't started to help people like myself who had

ONE LIMB shorter than the other????

I don't think ANYONE is trying to " cure " dwarfism.. nor do any of the doctors

say they're trying to, either.. so I think it's unfair for you to say such a

thing.

You people need to just agree to disagree and realize that the ELL HAS

improved MANY people's lives. I recently got a newsletter from my hospital in

Dallas showing pics and talking about how they performed it YET AGAIN on

someone else with a limb shorter than the other. So some of you may not agree

with it.. get over it. Don't try and tell someone that they were wrong for

doing it, or try and make em feel bad for doing it. It's their own personal

choice.. NOT yours.

Amy

November 21, 2002

I was 12 years old when I made the decision to get this done. But I

had been talking about it ever since I was 9. I even made a video in

my third grade class about my condition and what I thought about the

lengthening. If kids were forced into the ELL then I dont think they

would follow through with the entire thing. I was ecstatic to know

that I was able to get this done and from everyone else I have talked

to they were the same way. My parents are average sized and whenever

something came up they always asked my input. They would have

supported me either way. This was 100% my decision.

> >>

> >>> I just have a comment to make towards what Dr. Ain had to say

about

> >>> the procedure. First of all I think that it was inappropriate to

> > say

> >>> that you can die from this procedure or lose a limb. You cannot

die

> >>> from actually getting your limbs lengthened. What you can die

from

> > is

> >>> the anesthesia. But this is not the only surgery that requires

> >>> anesthesia, obviously.

> >>

> >> Just one quibble. With ELL, you can die from a fat embolism

> > breaking

> >> loose during the stretching process. This would be an exceedingly

> >> rare complication, but it is specific to ELL.

> >>

> >> Dan Kennedy

> >

> > Maybe this is so but as far as I know Dr. Paley has never had

anyone

> > lose a leg or die from the procedure. It was inappropriate for Dr.

> > Ain to say this because he doesn't specialize in ELL. If he

doesn't

> > agree with it thats fine. Another thin I dont get is that in a

> > previous documentary he said that he would allow his daughter

a,

> > I think that is her name, to get the surgery if that was her

> > decision. Why now is he all of the sudden going totally against

this?

> >

> > ===

> >

November 21, 2002

I think it would be better if doctors and surgeons would spend more time

educating themselves about psycho/social aspects of dwarfism, and then try to

make their patients feel better about their condition instead of spending

thousands of dollars trying to " cure " it.

But it's all about the money.

-Bill Bradford