Leg Lengthening

[Guest guest]

TAKE ME OFF YOUR LIST PLEASE>>>>>>>>

leticiacons <leticiacons@...> wrote: I believe God sent in this manner

for a purpose. It is up to each

one of us to discover our purpose on this earth. Leg lengthening, in

my opinion, gives a couple inches, maybe a foot more after years and

years of EXTREME pain and seclution in a bed. Why not spend that

energy and time discovering our purpose in life just as God sent us.

There is no perfect body, some might have a bigger nose, others

bigger eyes, others bigger behinds, where do you stop " fixing "

yourself? Our hearts are what is most important. Where is our

heart? I close with this:

" The Lord does not look at the things man looks at. Man looks at

outward appearance; but the Lord looks at the heart. "

I 16:7

[Guest guest]

As someone who has undergone this procedure and knows many others who have

done so I wanted to take issue with two things here. First, one is not in

" extreme pain " when they undergo limb lengthening, not at all and certainly

not for years. The first couple of days are the worst, the lengthening

stage can be painful, but that is not pain from the bone, rather mainly

from the muscles that are trying to stretch with the bone. LPs are

actually lucky in this regard because we seem to have excess

muscle. Honestly, the world I most often think of is uncomfortable. This

procedure is uncomfortable.

Second, you are not confined to a bed. With my tibias/fibulas I was

standing the day after surgery and walking a few days after that. Running

was not possible, but walking was an important part of the daily therapy

routine. With my femurs, because of the circumference of my femurs I was

non-weight bearing during the lengthening phase, but that was my

case. Others are able to be full weight bearing from day one. Either way

you do not have to say in bed. You can go out and do things, you just have

to be careful.

Finally, as to purpose, I believe we all have one and part of mine will

always be to help those who choose to undergo this procedure understand

what is involved and if they decide to have it done, as I and others did,

make sure they find good surgeons because that is key to a successful

outcome. I am the first person in North America to complete all three

stages of this procedure and I do believe I have a responsibility to help

those who come after me. I would never tell anyone they need to do this

and if and when I have kids the decision will be theirs, not mine, but I

also believe anyone who chooses to undergo this procedure should be allowed

to do so without being criticized or told they are bad people. Beyond

that, I believe it is the responsibility of organizations like LPA to help

their members who choose to do this find safe treatment. , myself

and others do what we can, but there are many we do not reach. LPA in the

form of the MAB and the Executive Board needs to examine the doctors doing

this and determine who is doing it safely and who is not and make that

information available to its members. I was hopeful that such steps were

beginning when Dr. i invited Dr. Paley to participate in a symposium on

ELL at the convention this year, but that invitation was recently

rescinded. I am not asking LPA to endorse ELL, I never would and I know in

some ways they cannot. But by refusing to reexamine their position (and to

my knowledge it's been over ten years since this issue was debated anywhere

except on this list) I believe they are doing a disservice to their

members. As always, just my opinion. Gillian.

[Guest guest]

Personally, I think limb-lengthening is not a good idea for most

people -- pain, chance of dangerous complications, and the fact that

it is not a " cure " for the genetic anomaly that causes dwarfism.

But saying that you shouldn't do it because God made you a certain

way is EXACTLY the same -- 100 percent -- as saying that you

shouldn't wear glasses because God gave you blurry vision for a

reason.

Dan Kennedy

>I believe God sent in this manner for a purpose. It is up to each

>one of us to discover our purpose on this earth. Leg lengthening, in

>my opinion, gives a couple inches, maybe a foot more after years and

>years of EXTREME pain and seclution in a bed. Why not spend that

>energy and time discovering our purpose in life just as God sent us.

>There is no perfect body, some might have a bigger nose, others

>bigger eyes, others bigger behinds, where do you stop " fixing "

>yourself? Our hearts are what is most important. Where is our

>heart? I close with this:

>

> " The Lord does not look at the things man looks at. Man looks at

>outward appearance; but the Lord looks at the heart. "

I 16:7

[Guest guest]

What about the fact that I'm fat because God gave the tasty foods all

the calories?

Seriuosly though, I would rather see all the money that goes into

these surgeries to pay for therapy instead. Learning to love and

accept yourself seems to me would give a longer lasting result than

whether you can reach the top shelf in the grocery store or drive

without pedal extensions. I find it interesting that according to

the " New Republic " article on LPA Online, Dr. Paley no longer

includes psychological counseling in his program because he calls

it " a waste of time. "

Rose

> But saying that you shouldn't do it because God made you a certain

> way is EXACTLY the same -- 100 percent -- as saying that you

> shouldn't wear glasses because God gave you blurry vision for a

> reason.

>

> Dan Kennedy

[Guest guest]

Dear Rose (and list),

I know I have said this before and I will do it again: LPs (at least the

ones I know) do not do this because we do not love or accept ourselves. We

do. But we know our identity goes beyond our size and whether we are four

feet of five feet we are the same people inside. Spending thousands of

dollars in therapy is not going to change that. When it comes to Dr.

Paley, as I have also said before when I began he did require his patients

be seen by a psychiatrist. After spending about four hours with me this

individual went on to tell Dr. Paley that I was a terrible candidate for

the surgery and would have disastrous results. To this day I have the best

results of any patient. Now I have always said a lot of that was I just

got lucky, but that cannot account for all of it. Around the time I

started another individual did as well. This psychiatrist proclaimed him

to be a perfect candidate. Again, actions proved him wrong and

accordingly, in time, Dr. Paley decided to stop this practice. As for any

broader psychological counseling in the program, I guess Dr. Paley trusts

his patients enough to determine on their own whether or not they need that

kind of help. I would not have wanted him to mandate that I had to talk to

a psychiatrist every time I went down to see him and I know many others

feel the same way. If someone felt they were in need of counseling while

they were going through this, I am sure Dr. Paley and his staff would do

all they could to help them, but he does not feel a need to force all his

patients to do so. I guess I just do not understand why some believe that

there has to be something mentally or emotionally wrong with LPs who choose

to undergo ELL. That has to be the reason we would even consider doing

this to ourselves. Well, that's just not the case. We are perfectly happy

people inside and outside, well we just want to make things a little

easier, which undergoing ELL does. Gillian.

[Guest guest]

I might be stepping out on a long limb here with my post....No pun intended :-)

Gillian Mueller <gillianmueller@...> writes:

" After spending about four hours with me this individual went on to tell Dr.

Paley that I was a terrible candidate for the surgery and would have disastrous

results.  

To this day I have the best results of any patient. "  

Best Results...physically or psychologically?

Just because you had the best " physical " results, doesn't mean you were

psychologically prepared. The appointed psychologist said him/herself that you

weren't a good candidate. They weren't talking physically. I know this,

because I went through the same evaluations, and passed with flying colors.

HOWEVER, I, unlike you, decided not to go through with it, because I believed 5

years of my life, not being able to live my life to the FULLEST was not

something I was able to sacrifice in order to be 12-14 inches taller. (I say

fullest because, I wouldn't have been able to compete professionaly like I had

been in cheerleading and dance, that is something you canNOT do while having

your limbs lengthened)

I agree that this type of surgery is a decision each individual, if interested,

needs to make. HOWEVER, I personally don't appreciate you coming on to this

list and saying over and over and OVER again, how thoroughly happy you are now

that you have become taller, and that if you could do it again, that you would

in a heartbeat. I take offense to those remarks, because I take it that you

felt inadequate as a dwarf, so you went through this procedure. Do you view all

dwarfs as inadequate? Uncapable of living life to the fullest just because we

are a mere foot below the rest of the population? I only ask these things,

because I'm irritated at hearing over and over and OVER again at how much BETTER

your life is now that you are " average " . Especially since, technically, your

still a dwarf.

I would like to suggest that if a new member comes in seeking information

regarding limb lengthening that you e-mail them privatly because I don't want to

hear about it. I only speak for myself, but I do know that this list, while

growing larger day by day, is still made up of mostly the same individuals. I

heard your story the first time, heck, I even heard it the 2nd, 3rd and 4th

times, I'd like to not have to hear it a 5th, 6th and 7th time. I know I know

" That's what your delete key is for " . Well, being polite and notifying

only the inquirer is called " Being courteous to others feelings " .

[Guest guest]

I agree with the below,I wear glasses(thick ones too),and my 3 oldest children

wear braces on their teeth(not for cosmetic reasons).

I found out this week past,that many people find short undesirable.It has

given me a jolt to find friends of mine have been waiting around to see what we

will _do_ about our son.I was

irked to find a mommy on another club crushed to know her son would only grow to

5'5.(My husband is 5'4 " )

Here is the worry I have-People(doctors)don't like to sit on their hands,so

when in the future will we be forced to use GH or limb lengthening?I think some

doctors might cause a stink about the GH now(I am talking about the borderline

cases,not the low multihormone)

Jill

Re: Leg lengthening

Personally, I think limb-lengthening is not a good idea for most

people -- pain, chance of dangerous complications, and the fact that

it is not a " cure " for the genetic anomaly that causes dwarfism.

But saying that you shouldn't do it because God made you a certain

way is EXACTLY the same -- 100 percent -- as saying that you

shouldn't wear glasses because God gave you blurry vision for a

reason.

[Guest guest]

But saying that you shouldn't do it because God made you a certain

way is EXACTLY the same -- 100 percent -- as saying that you

shouldn't wear glasses because God gave you blurry vision for a

reason.

Dan Kennedy

After seeing me you'll want yer blurry vision back. I'm so butt ugly

that my butt has filed separation papers!

grady

[Guest guest]

Dear , and list,

Where to begin. I guess I will start with and the psychological

aspects of all this. I have the best physical results, but the point that

you miss is that if I were not psychologically prepared I would not have

been able to obtain those results. Also, let's get our facts straight. It

does not take five years. My tibias/fibulas took eight months, my humeri

seven months and my femurs five months. If you add it all up that equals

twenty months in frame, not even two years. Usually I tell people to

expect to dedicate three years of their lives to this because you sometimes

need to continue with therapy post-removal, but even with all that we are

still far short of your five years.

As for what you do or do not appreciate, as you say, use your delete

key. Yes, I can respond privately to people and often do, but as you said,

new people do join this every day and I sometimes feel it important to

address my comments to a wider audience. Also, what if there are other new

members who are not comfortable asking about this subject on here but wish

to know more. My answers benefit them. We all want things to happen in

this world, but it does not always work out that way. And you may say I am

being discourteous in doing so, but I think I am being responsible. To my

knowledge (and someone please correct me if I am wrong), it has been over

ten years since the MAB and Executive Committee discussed limb

lengthening. The only thing they are willing to say about limb lengthening

is that it is wrong. They refuse to acknowledge that there are surgeons

who are responsible and are getting good results and in the process have

made this a safe option for some LPs if they wish to undergo it (for some

it will never be an option and that needs to be recognized as well.) They

turn down invitations to meet and examine patients who have had successful

outcomes. I have written to Leroy Bankowski asking that the Executive

Committee and MAB thoroughly examine all surgeons performing this and

inform their members of their findings. He refused. Of course that is

his prerogative, but what people seem to be missing here is as a result

people are left to find surgeons on their own and sometimes that leads them

to places they do not want to go. Did you know that there is a podiatrist

who will lengthen people? Now that fact alone would put me off, but it

does not deter others and many have come to regret it because they realize

too late that a podiatrist is probably not the best person to go to for

limb lengthening. If I can prevent even one person from making that

mistake I would be happy.

As for whether or not I believe dwarves who do not choose to have this done

are inadequate, I most certainly do not. This is a personal decision

anyone should be able to make for him/herself. I do not think any less of

someone who chooses not to undergo it. Of course I am still a dwarf (even

wrote letter to the editor of the Richmond Times informing them of such in

response to an article they published under the headline " Dwarfism May Not

Be A Lifelong State. " ) And if and when I have kids they will decide

whether or not to undergo limb lengthening.

Finally to insurance. The figure mentions is actually a

conservative one. I think in total my procedures cost around $300,000 and

minus whatever deductibles my father had it was completely covered, as it

should be because this is not a cosmetic procedure and it is not

experimental, at least not anymore. That does not mean insurance companies

should not cover other procedures LPs need, they most certainly should and

did when I was a kid and needed to have my legs straightened with Dr. Kopits.

In closing, all I can say is I am sorry you are so bothered by my posts on

this topic, but as long as LPA refuses to even discuss this issue and find

a way to reach out and help its members who do may wish to undergo this, I

will feel a sense of responsibility to help those who do wish to know more

and point them in the right direction. Gillian.

[Guest guest]

when the mab and the executive committee released a statement saying limb

lengthening was bad, what reasons were given?

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

From:

[Guest guest]

Gillian,

I appreciate your response, and for those not interested in further reading

this discussion I advise you to stop now.

Actually Gillian, your figure of 3 years is partially correct. BUT, the

number of years goes up as the patient gets older. I was 21 when I decided

to look into this, and that was the figure given to me because, as it was

explained to me, the bones do not grow as fast as they do when you are young,

and therefore make the procedure longer. Hence, the 5 years.

As for your reasons to constantly post to the listserv (I like to refer to it

as " recruiting " ), that's fine, I expected that kind of response from you.

But one question for you, why are you so passionately interested in changing

dwarfs? Oh I'm sorry, I mean, passionately interested in giving information

on ELL?

Dwarfism isn't a deadly disease. ELL is not a cure. Dwarfism doesn't give

us a shorter (no pun intended) life expectancy. Or does it in your eyes? If

I'm not mistaken, your only reasons for having this surgery was to:

A. Not have issues when driving any car

B. Reach things in high places

and

C. Straighten the spine/bowing of the legs (am I correct on this last one?

Because that was one of my reasons to look into it.)

In regard to your statements about turning dwarfs in the right direction as

far as the correct professionals to see, I think the LPA website does a

thorough job of that, as well as your " private " responses to inquiries. I

would worry about ANY person not educated enough to choose and think

carefully about which doctor to go to for any reason. Yes I'm sure there are

podiatrists who will do ELL, as well as there are Dentists who do heart

transplants. It's called Malpractice, and that occurs everywhere.

My main point, as I will assert again, was in regard to your constant

e-mailing to the list about how happy you are with being average size. You

don't have to spell it out that you were unhappy being a dwarf, that

statement is underlying. And that point I'm making right there is where I

get aggravated. I never asked you if you thought less of us, I asked if you

thought we were inadequate as short stature individuals? Meaning, not fully

capable of achieving all our goals by not being taller. Can you answer that

question?

If you respond with a no, then tell me how reaching the top shelf and having

" faster " mobility in any car is not an obstacle we, as dwarfs, are capable of

maneuvering around. Surely you didn't waste 3 years of your life and make

your insurance carrier fork over $300,000 just because it would be a " little

bit " easier to be taller.

And if you answer with a yes, well then, I have nothing more to say.

As to the rest of this list who has graciously read my whole post :-) I

promise my next response will be private, as to not disturb the happy

atmosphere in this listserv with all the positive posts about other topics.

:-)

Thanks,

[Guest guest]

>when the mab and the executive committee released a statement saying

>limb lengthening was bad, what reasons were given?

You can find all statements associated with LPA and limb-lengthening

in the Extended Limb-Lengthening section of the LPA Online Library:

http://www.lpaonline.org/resources_library.html

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

Dan Kennedy

Internet services coordinator

Little People of America, Inc.

http://www.lpaonline.org

[Guest guest]

,

First, you are the first person to ever mention five years. I have never

known any LP to take that long no matter what age. Yes, bone does not

consolidate as fast once you reach adulthood, but to my knowledge it does

not slow down that much.

Second, I am not recruiting anyone. I have always maintained this is a

personal decision and I would never try to convince someone they need to

have this done. That is not my place. I make sure people know there is a

positive side to this. No more. And why am I " passionately interested in

giving information on ELL, " because if I do not few do. Dan has done a lot

of good by creating the section on ELL and I have thanked him for that, but

there is still a lot of information that people considering this need to

know. I don't want to change anyone, I just want to help them make

educated decisions. LPA provides one side of the debate and I (with the

help of Dr. Paley) provide the other.

Third, of course dwarfism is not a deadly disease. Of course it is not

something that needs to be cured. I have never said such and anyone who

really reads what I have been saying over the years understands that. It

does not decrease ones life expectancy -- that's science so I am not sure

why you would think it would be different in my eyes.

Fourth, my reason for doing this was to make my life functionally

easier. Driving a car and reaching things in high places are two

examples. There are many others that I am not going to bother to list

here. My legs had already been straightened when I was two.

Fifth, the LPA website provides a list of skeletal dysplasia

specialists. It makes no reference to limb lengthening and reconstruction

specialists. Yes, malpractice occurs everywhere, but wouldn't it be nice

to help people not have to face it?

Sixth, I have said it before and I will again, I was not unhappy as a

dwarf. I did not think I was inadequate as a short individual and I do not

think any LP is inadequate as a short individual. Just because I wanted to

make my life functionally easier does not mean I thought I was inadequate

before.

Anyone, no matter what size, shape or color, is capable of achieving their

goals. I have never, ever, asserted otherwise. This is a personal

decision anyone should be able to make for him/herself. I do not

constantly e-mail this list about how happy I am, but when this topic is

brought up (rarely by me I will add) I will share my opinion and though you

may not want to know this people do write to me privately and thank me for

continuing to be a part of this despite the negative responses I sometimes

receive. As long as those people still value my input, I will continue to

share my experiences. Gillian.

[Guest guest]

On Tue, 9 Apr 2002, Gillian Mueller wrote:

> In closing, all I can say is I am sorry you are so bothered by my posts on

> this topic, but as long as LPA refuses to even discuss this issue and find

> a way to reach out and help its members who do may wish to undergo this, I

> will feel a sense of responsibility to help those who do wish to know more

> and point them in the right direction.

I think Gillian makes an excellent point here in that, like it or not, LPA

should have a responsibility to its members, and to the dwarfism community

in general, to be fully up to speed on the limb-lengthening issue. Out of

all the organizations in the world, I would expect LPA to be most

qualified to calmly debate this topic at length and from all angles --

psychological, medical, social, etc. The fact that it appears not to be

able to do so indicates that its current position on limb-lengthening is

much more reactionary than rational.

Dave

[Guest guest]

Gillian,

As you may know I'm running for President of LPA 2002-2004.

I am still forming opinions on the ELL issue.. Personally, I wouldn't trade

my size for anything in the world!... Being 4'-1 " has proven to have

tremendous advantages in my own life. The skills I developed asking people

to

get things down from the high shelves at stores has translated into selling

skills that excel me in my business career. I can't tell you how many

" deals " I have closed that are a direct result of people feeling inspired by

my positive attitude and acceptance of my physical traits. Sure you can

have a positive attitude with longer legs. I however, prefer to radiate a

very particular confidence that I believe is the result of total self

acceptance in just being me. I feel that radiance may not come across quite

as strong if you had undergone a procedure that's intent was to make

substantial alterations to an obvious characteristic. In addition, the

difficult challenges of being small have built up a resiliency in my own

soul that I treasure, and I'm now able to demonstrate to my children. I

like EXACTLY who I am.. Big nose and all. I'm not saying that you can't

have those assets after undergoing ELL but the jury may still be out on

those subtle psychological impacts.

With that being said-- It doesn't mean that I think it may not be the right

choice for others. I'm reading a lot of opinions and have been reading all

of your recent very well written emails to help me continue to form my own

opinions on ELL. I believe that LP's deserve the information to make

informed decision that are in their own best interest. I have read both

sides of the LPAOnline articles that the MAB and you have posted there. I

was pleased that Dan K. has attempted to represent both sides of this issue

on

an " official " LPA web page. I think that is a step in the right direction.

The LPA Board of Directors (BOD) does discuss this issue on a regular

basis.. You may be surprised at how balanced the discussion typically are..I

really believe that LPA withdrew the invitation to Dr. Paley for reasons

different that you may realize. LPA would like the members to

receive balanced perspective and (non selling) information on this

procedure.

You are falling into the same trap that Dr. Paley is perceived by the LPA

BOD. You 'push it' so hard (and so does Dr. Paley).

The bulk of the discussion at the last Board meeting was how " fanatical " Dr.

Paley has been on pushing this procedure.

There is a perception that yours (and his) intentions are less than noble. I

realize this may not be true.. but after reading your recent posts, I'm

beginning to wonder myself.

My 'perception' is that Dr. Paley does not evaluate a patient when the

patient asks for consultation but instead Dr. Paley Sells the patients on

the merits of the procedure. That is very different than several other

Doctors offering this procedure.

Again, I may be wrong I have never been at a patient visit with Dr. Paley,

but I have seen him on TV.

I personally would like to see you continue to answer the periodic questions

but to take off-line the hard sell.. I think it may make it more difficult

to use you as a balanced resource for LPA on this issue in the future.

Sincerely,

Matt Roloff

Re: Re: Leg lengthening

> ,

>

> First, you are the first person to ever mention five years. I have never

> known any LP to take that long no matter what age. Yes, bone does not

> consolidate as fast once you reach adulthood, but to my knowledge it does

> not slow down that much.

>

> Second, I am not recruiting anyone. I have always maintained this is a

> personal decision and I would never try to convince someone they need to

> have this done. That is not my place. I make sure people know there is a

> positive side to this. No more. And why am I " passionately interested in

> giving information on ELL, " because if I do not few do. Dan has done a

lot

> of good by creating the section on ELL and I have thanked him for that,

but

> there is still a lot of information that people considering this need to

> know. I don't want to change anyone, I just want to help them make

> educated decisions. LPA provides one side of the debate and I (with the

> help of Dr. Paley) provide the other.

>

> Third, of course dwarfism is not a deadly disease. Of course it is not

> something that needs to be cured. I have never said such and anyone who

> really reads what I have been saying over the years understands that. It

> does not decrease ones life expectancy -- that's science so I am not sure

> why you would think it would be different in my eyes.

>

> Fourth, my reason for doing this was to make my life functionally

> easier. Driving a car and reaching things in high places are two

> examples. There are many others that I am not going to bother to list

> here. My legs had already been straightened when I was two.

>

> Fifth, the LPA website provides a list of skeletal dysplasia

> specialists. It makes no reference to limb lengthening and reconstruction

> specialists. Yes, malpractice occurs everywhere, but wouldn't it be nice

> to help people not have to face it?

>

> Sixth, I have said it before and I will again, I was not unhappy as a

> dwarf. I did not think I was inadequate as a short individual and I do

not

> think any LP is inadequate as a short individual. Just because I wanted

to

> make my life functionally easier does not mean I thought I was inadequate

> before.

> Anyone, no matter what size, shape or color, is capable of achieving their

> goals. I have never, ever, asserted otherwise. This is a personal

> decision anyone should be able to make for him/herself. I do not

> constantly e-mail this list about how happy I am, but when this topic is

> brought up (rarely by me I will add) I will share my opinion and though

you

> may not want to know this people do write to me privately and thank me for

> continuing to be a part of this despite the negative responses I sometimes

> receive. As long as those people still value my input, I will continue to

> share my experiences. Gillian.

>

>

>

> ===

>

[Guest guest]

On Tue, 9 Apr 2002, Dan Kennedy wrote:

> You can find all statements associated with LPA and limb-lengthening

> in the Extended Limb-Lengthening section of the LPA Online Library:

I have a few questions and observations regarding the ELL section of the

LPA Online Library.

Who is the author of the Introduction? Some of the assertions it makes are

written rather " fuzzily " . That is, they seem to use some creative

half-truths in the process of leaping to conclusions which seem to be

drawn more from the author's bias against the procedure than from rational

thought.

Specifically, Paragraph 2, 3rd sentence reads:

> " Instead, it permanently weakens healthy arms and legs simply so the

> person who is operated on looks more like the average-sized majority. "

I have a couple of problems with this sentence. First, the statement that

it " permanently weakens healthy arms and legs " is written here as if it is

undisputed fact. Yet later in the Introduction, the author implies that no

one really knows for sure whether weakening occurs or not, and in fact

cites a case where the patient believes the limbs are actually stronger.

Second, it draws the conclusion " simply so the person who is operated on

looks more like the average-sized majority. " This conclusion implies that

limb-lengthening is done only for cosmetic reasons. The entire

Introduction piece leaves out the extreme probability that patients who

have undergone successful limb-lengthening will gain functional benefits

from the procedure.

Paragraph 6 reads:

> " With all due respect, it seems impossible that his arms and legs are

> stronger as a result of the surgery. It's possible that they're

> stronger because of the rehabilitation he underwent. But even

> advocates of the surgery have acknowledged that there may be long-term

> weakening of the limbs and an increased risk of arthritis. "

Again it would be nice to know who actually wrote this and what their

qualifications are for evaluating the medical possibilities.

Also, in reference to the LPA Medical Advisory Board's Position Paper on

ELL, it definitely seems like the date it was published should be

indicated, so that we know how current this position is. Also, I wouldn't

mind knowing specifically who the members of the MAB were at the time this

paper was written. I do give the paper credit for appearing to present the

information in a neutral, non-judgmental tone.

Dave

[Guest guest]

> how many people on this list wants or wanted to have there legs

lengthened??

I do, I do!

Then again to which leg were you referring?

OIC, not that one. Oops. lol

grady;)

[Guest guest]

Actually, I wanted to have my legs lengthened. But it was too risky

and I didn't want to go through a year or so in those contraptions. I

also had enough surgeries and I figured I rather be under the knife

if it was necessary. Plus I knew that if I had that surgery there is

a chance it would make my legs and hips MUCH worse than they already

were. I rather have normal hips than be tall.

I had taken Growth Hormone shots as a child. I had or have no

regrets.

Each to their Own I always say. I don't think it's the height that

needs fixing or " cured " It's more of what comes with the dwarfism,

back and hip problems and other orthopedic issues.

a

> how many people on this list wants or wanted to have there legs

lengthened??

[Guest guest]

When Gillian said, " When I was a dwarf.... " Guess what? You're still a

dwarf!!

Patty

Re: Re: Leg lengthening

> ,

>

> First, you are the first person to ever mention five years. I have never

> known any LP to take that long no matter what age. Yes, bone does not

> consolidate as fast once you reach adulthood, but to my knowledge it does

> not slow down that much.

>

> Second, I am not recruiting anyone. I have always maintained this is a

> personal decision and I would never try to convince someone they need to

> have this done. That is not my place. I make sure people know there is a

> positive side to this. No more. And why am I " passionately interested in

> giving information on ELL, " because if I do not few do. Dan has done a

lot

> of good by creating the section on ELL and I have thanked him for that,

but

> there is still a lot of information that people considering this need to

> know. I don't want to change anyone, I just want to help them make

> educated decisions. LPA provides one side of the debate and I (with the

> help of Dr. Paley) provide the other.

>

> Third, of course dwarfism is not a deadly disease. Of course it is not

> something that needs to be cured. I have never said such and anyone who

> really reads what I have been saying over the years understands that. It

> does not decrease ones life expectancy -- that's science so I am not sure

> why you would think it would be different in my eyes.

>

> Fourth, my reason for doing this was to make my life functionally

> easier. Driving a car and reaching things in high places are two

> examples. There are many others that I am not going to bother to list

> here. My legs had already been straightened when I was two.

>

> Fifth, the LPA website provides a list of skeletal dysplasia

> specialists. It makes no reference to limb lengthening and reconstruction

> specialists. Yes, malpractice occurs everywhere, but wouldn't it be nice

> to help people not have to face it?

>

> Sixth, I have said it before and I will again, I was not unhappy as a

> dwarf. I did not think I was inadequate as a short individual and I do

not

> think any LP is inadequate as a short individual. Just because I wanted

to

> make my life functionally easier does not mean I thought I was inadequate

> before.

> Anyone, no matter what size, shape or color, is capable of achieving their

> goals. I have never, ever, asserted otherwise. This is a personal

> decision anyone should be able to make for him/herself. I do not

> constantly e-mail this list about how happy I am, but when this topic is

> brought up (rarely by me I will add) I will share my opinion and though

you

> may not want to know this people do write to me privately and thank me for

> continuing to be a part of this despite the negative responses I sometimes

> receive. As long as those people still value my input, I will continue to

> share my experiences. Gillian.

>

>

>

> ===

>

[Guest guest]

Dave --

I wrote the introduction. It absolutely puts a negative spin on

limb-lengthening, but I think the tone of the intro nevertheless

accurately reflects the points made in the MAB Position Paper. The

increased risk for arthritis is directly cited by the MAB -- and if

ELL causes arthritis, then by logical extension it causes weakening

of the limbs. Moreover, I think it's safe to say the LPA leadership

has been quite critical of ELL. My goal was to present as much

information about ELL as I could -- including Gillian's very positive

essay and a link to Dr. Paley's website -- while at the same time

respecting LPA's historical skepticism of ELL.

If it's time for the MAB to take another crack at this.

Dan Kennedy

Webmaster

LPA Online

http://www.lpaonline.org

===

At 12:28 AM -0700 4/10/02, Bradford wrote:

>On Tue, 9 Apr 2002, Dan Kennedy wrote:

>

>> You can find all statements associated with LPA and limb-lengthening

>> in the Extended Limb-Lengthening section of the LPA Online Library:

>

>I have a few questions and observations regarding the ELL section of the

>LPA Online Library.

>

>Who is the author of the Introduction? Some of the assertions it makes are

>written rather " fuzzily " . That is, they seem to use some creative

>half-truths in the process of leaping to conclusions which seem to be

>drawn more from the author's bias against the procedure than from rational

>thought.

>

>Specifically, Paragraph 2, 3rd sentence reads:

>

>> " Instead, it permanently weakens healthy arms and legs simply so the

>> person who is operated on looks more like the average-sized majority. "

>

>I have a couple of problems with this sentence. First, the statement that

>it " permanently weakens healthy arms and legs " is written here as if it is

>undisputed fact. Yet later in the Introduction, the author implies that no

>one really knows for sure whether weakening occurs or not, and in fact

>cites a case where the patient believes the limbs are actually stronger.

>

>Second, it draws the conclusion " simply so the person who is operated on

>looks more like the average-sized majority. " This conclusion implies that

>limb-lengthening is done only for cosmetic reasons. The entire

>Introduction piece leaves out the extreme probability that patients who

>have undergone successful limb-lengthening will gain functional benefits

>from the procedure.

>

>Paragraph 6 reads:

>

>> " With all due respect, it seems impossible that his arms and legs are

>> stronger as a result of the surgery. It's possible that they're

>> stronger because of the rehabilitation he underwent. But even

>> advocates of the surgery have acknowledged that there may be long-term

>> weakening of the limbs and an increased risk of arthritis. "

>

>Again it would be nice to know who actually wrote this and what their

>qualifications are for evaluating the medical possibilities.

>

>Also, in reference to the LPA Medical Advisory Board's Position Paper on

>ELL, it definitely seems like the date it was published should be

>indicated, so that we know how current this position is. Also, I wouldn't

>mind knowing specifically who the members of the MAB were at the time this

>paper was written. I do give the paper credit for appearing to present the

>information in a neutral, non-judgmental tone.

>

>Dave

[Guest guest]

<<Out of all the organizations in the world, I would expect LPA to be most

qualified to calmly debate this topic at length and from all angles --

psychological, medical, social, >>

and political?

[Guest guest]

It sure sounded like a telling remark...Gillian, your freudian slip is

showing!

Patty

Re: Re: Leg lengthening

>

> From: " GRANT & PATTY BOWERS " <gpsab@...>

>

> > When Gillian said, " When I was a dwarf.... " Guess what? You're still a

> > dwarf!!

> > Patty

>

> Yer, but Patty, how LONG has she been a dwarf? What was she BEFORE she was

a

> dwarf?????

>

> One thing we never ever heard from our parents,which average kids did,

> " He/She will grow out of it! "

>

> Fred

>

>

>

> ===

>

[Guest guest]

Dear Gillian and List:

I am the father of a dwarf son and enjoy reading Gillian’s E-Mail. This is a

new procedure and as such she will be asked to talk about her success over

and over and over. I have had eye surgery to correct my vision and am very

happy with the results. I have had many people ask about the procedure and I

was more than happy to share my experience over and over and over. I was not

selling them on the procedure just stating the fact that I am very happy and

the procedure was a success.

Most of the people responding to Gillian have already made the decision

whether or not to have the ELL procedure. It appears most have decided

against the procedure and for good reasons. However, some people such as my

son will face this decision in the future and I want to here from people who

have had the procedure whether there results are negative or positive.

Thank you for the input Gillian. I missed it the first over and over and over.

Brad Simpson

[Guest guest]

From: " GRANT & PATTY BOWERS " <gpsab@...>

> When Gillian said, " When I was a dwarf.... " Guess what? You're still a

> dwarf!!

> Patty

Yer, but Patty, how LONG has she been a dwarf? What was she BEFORE she was a

dwarf?????

One thing we never ever heard from our parents,which average kids did,

" He/She will grow out of it! "

Fred

[Guest guest]

Mr. Kennedy,

I understand you are an average size person with a LP daughter. I

know as a father you are able to feel some of your daughters pain and

joy. My concern is you cannot give a true assessment on the pro's and

con's of leg lenthening. You are not a LP and you have know idea what

we feel during our day to day lives. The giggles,stares,pointing,name

calling and that is just a few the things we have to deel with . I

know having a serious procedure is a lot a pain and discomfort plus

the time that he or she would be laid up, but I bet some lps would be

looking at the long term rewards. I am not saying lp should have this

done. I just do not feel you are the right person to cast an opinion

on such a delicate subject.

Mr. Kennedy, I hope you take no offense, that truly is not my purpose

of this post. I apprciate you contributions you and your family have

made to LPA and hope you will please continue.

Sincerely,

Jim

> >

> > " The Lord does not look at the things man looks at. Man looks at

> >outward appearance; but the Lord looks at the heart. "

> I 16:7