Re: Re: Open message for the LPA listserve from Drs. Paley and Herzenberg

[Guest guest]

On Tue, 7 Aug 2001 bradfra@... wrote:

> Is it me? Or is this post absurd? Dr. Kopits's practice has barely

> closed and the damn leg lengthening vultures are already circling the

> road kill. What's up with that? Are these people members of the LPA

> medical advisory board or a couple of quacks with a cordless drill, a

> band saw, and Canadian Whiskey?

Randy, I understand your point of view. Your reaction was the same one I

had when I first read their E-mail. However, after reading it carefully, I

decided that I don't have a problem with their posting this info to the

list (though I still think they could have written it better, considering

the controversial nature of limb-lengthening within LPA). I'm going to

comment on a few points from their E-mail.

> In the LPA community we are best known for our work in limb

> lengthening.

Unfortunately, a poor opening sentence. It immediately makes most LP

readers highly suspicious and skeptical.

> Some of you also recognize our expertise in straightening bowed limbs.

> Perhaps you don't know that there is no center in all of the US and

> Canada that performs more surgery for limb straightening than our

> center.

I did not know that.

> Within the orthopedic surgery community we are recognized for our

> expertise in treatment of lower and upper limb deformities. Our book

> entitled 'Principles of Deformity Correction' which will be published

> by Springer-Verlag in September of this year is an 800 page

> illustrated text on how to scientifically analyze and treat lower limb

> deformities. In addition, for the past 10 years, we have taught an

> annual course on this topic for Orthopedic surgeons from North America

> and from around the world.

This is good stuff. One criticism I have heard about Dr. Kopits (and which

is extremely valid, if true) is that he keeps his knowledge to himself. As

far as I am aware, Kopits has never published a anything like a textbook

containing his vast knowledge and expertise. It's a shame, because to LPs

and their doctors, such a book would be worth it's weight in gold.

Regarding the book and lectures by Paley and Herzenberg -- many people

would not want to undergo the type of correction they prescribe;

nevertheless, their efforts at sharing of their knowledge and experience

should be applauded.

> Regarding our approach to patients with dwarfism and angulations in the

> limbs (e.g. bowlegs or knock knees, etc), we use the newest and most

> advanced methods including internal and external fixation. Most of our

> surgery is performed percutaneously with minimal incision techniques and

> therefore minimal blood loss.

Using the least invasive of surgical techniques is always a good thing.

> While most surgeons correct bowed limbs by removing a wedge of bone,

> we prefer to add wedges of bone by growing new bone with gradual

> distraction through the cut bone. This principle is especially

> important for patients with skeletal dysplasia, because there is a

> relatively small length of bone to begin with. The patients own

> healing ability is used to grow these additional wedges of bone as we

> gradually straighten the limbs. Gradual correction of a bowed or

> angulated bone is preferable in many cases because there is little

> risk of nerve injury and length is gained and not lost with the

> correction.

The principle of adding vs. removing bone (for deformity correction) makes

a lot of sense. However, many LPs will question the statement that

" gradual correction of a bowed or angulated bone is preferable " . The issue

goes way beyond the physiological impact on the limb. For instance, how

long is " gradual " ? How long does the patient have to face the pain and

therapy that will result from the procedure? What about the need for pain

meds? How long will this technique hinder their ability to return to work,

to school, to independence, and to a normal life with family and friends?

How will it impact them psychologically?

> Furthermore the methods we use ( many of which were developed and

> published by us) allow the patient to be up out of bed and walking on

> the operated limb(s) the day after surgery and begin physical therapy

> immediately after surgery.

Almost makes it sound like you're almost as good as new the day after

surgery, which can't be the case. I would have to see some hard evidence,

and hear from some people who have gone through it, to get a sense of how

" up-and-around " one would feel after going through this surgery.

> Some of the operations we perform are specifically designed to prevent

> the inevitable arthritis that will develop in the hips and knees of

> some dysplasia conditions (e.g. epiphyseal dysplasia,

> pseudoachondroplasia).

If these operations are proven to be effective in preventing arthritis,

then this is excellent. It makes sense that an orthopedic surgeon could

significantly postpone the onset of arthritis through limb and joint

straightening. Osteoarthritis is the wearing away of cartilage in the

joint; if they can reduce the wear and tear on the cartilage, it will last

longer.

In summary, I think that we should welcome and encourage doctors to be

members of this list. However, I agree with Randy that they shouldn't use

it as marketing tool. They should become real live members of the

community and offer free expert advice via the list. And they would

probably find it more effective in gaining clients than simply posting an

advertisement.

- Dave

[Guest guest]

Dear Randy, Dave and list,

Randy, you are correct, the message I forwarded to the list is not from Dr.

i, rather Dr. Dror Paley and his partner, Dr.

Herzenberg. They are not members of the LPA medical advisory board, but

they certainly are not " a couple of quacks with a cordless drill, a band

saw, and Canadian Whiskey. " And if you want to blame anyone for this post,

you can blame me, for I was the one who suggested doing this to them. Dr.

Paley is my orthopaedic surgeon, has been so for over thirteen years now,

and I know the good work that he does not only in the area of limb

lengthening, but also in the area of correcting deformities such as bowed

legs and knocked knees. Accordingly, when people started writing to the

list searching for doctors to fill the large gap Dr. Kopits is leaving, I

suggested they put something together that I could send to the list

describing how they could help. The idea was mine, not theirs and I

thought some on the list might be interested in this. It was not meant to

be disrespectful to Dr. Kopits or upset anyone. If Dan is willing to link

their website, I am sure they would be fine with that; it

is: www.limblengthening.org. Right now the website is undergoing major

changes since they moved from one hospital to another the start of last

month, but the basic information is there and a lot more should be added

soon.

Dave, since I underwent this procedure to lengthen, not straighten (Dr.

Kopits had already done that years before) my limbs I cannot speak directly

to your questions, but I will tell you when I had the Ilizarov cages on my

tibias/fibulas I was up standing the day after surgery, walking with a

walker a few days after that and on crutches a couple of weeks later. The

pain medication issue is not one I want to comment on because I do not know

what Dr. Paley and Dr. Herzenberg do with the majority of their

patients. I will say no one I know has ever become dependent on pain

medication. As for how long it all depends on the individual case. As for

Dr. Paley and Dr. Herzenberg becoming more involved in the LP community, I

am sure this is something they would welcome. Dr. Paley has been talking

for a couple of years now about coming to a convention and I think he has

spoken to Dr. i about attending the one next year. And while I do not

think Dr. Paley will ever become a member of this list (he is just too busy

to keep up with the volume of e-mail generated) he is always happy to

answer questions that I send him and has on many occasions when I thought

he had something to offer or might be able to help. I usually just forward

his messages to the individual asking the question though, not to the whole

list. But anyone should always feel free to contact me if they would like

his input on something. He is happy to help in any way he can. Gillian.

[Guest guest]

Dave,

It's a misconception that Dr. Kopits has not shared his knowledge with

other doctors. He wrote the textbook, " Human Achondroplasia : A

Multidisciplinary Approach (Basic Life Sciences, Vol 48) " with

Benedetto ttii, as well as many medical journal articles over the

years. His largest project thus far is near completion; it is a set of

surgical video tapes which will be distributed to medical schools in hopes

of teaching a whole new generation of doctors how to treat LP orthopedic

problems.

As far as the limb lengthening doctors' claim that they can prevent

arthritis in some types of dwarfism, I'm very skeptical about this claim.

The arthritis that some types of LPs experience has to do with their

cartilage defect and the changes that come to the bone end cartilage over

time -- without changing the actual genetic makeup of the cartilage, nobody

can _prevent_ the nature of the " beast " . Good leg alignment can hopefully

delay the arthritis, but it _cannot_ avoid it altogether. Dr. Kopits tells

his patients the truth about this, but then he knows a LOT more than these

guys! As a diastrophic, for instance, your bone end cartilage develops

small hard cysts which make the cartilage lose its cushioning value. Good

leg alignment will give better blood supply to these bone ends and might

delay the onset of this cartilage change, but the changes _will_ happen

eventually.

I found it rather tacky AND scary that these doctors are soliciting

patients on the listserv. Buried in their letter is the idea that they can

correct the ortho stuff without doing any lengthening, but the danger that

I see is that it's just a hop, skip, and a jump to lengthening since the

child is already going to _have_ to wear external fixators during the

post-op period. These doctors do not use post-op casts, they make that

clear in their letter -- they state that the ONLY way they correct bone

bowing and angulation is with these fixators. Since lengthening IS their

main business, I would be afraid that parents would feel uncomfortably

urged into the lengthening phase -- especially those parents who have young

children and haven't totally resolved the issue in their own minds that LPs

function just fine with their short-stature.

Not that external fixators are not useful in the alignment of orthopedic

problems with LPs. Some of the orthopedic dwarfism specialists have

already found the use of these fixators helpful in the treatment some of

their LP patients. It's the limb lengthening doctors' focus on lengthening

and making LPs taller, rather than the focus of correcting disability that

turns me off. I'm sure they'd argue with me about my perception, but

that's okay with me!

I understand that families and adult LPs have to make their own decisions

about this medical stuff, but I'd like to see them get all the facts first

-- not from limb lengthening doctors who have treated only a few patients

with just a few types of dwarfism, but preferably via true orthopedic

dwarfism specialists. Aside from Dr. Kopits, there are a few other true

orthopedic dwarfism specialists out there, like those at Hopkins, A.I.

Dupont, etc. I also usually suggest to parents that the LPA Medical

Advisory Board is a good place to start looking for their child's dwarfism

specialist.

Just my 2 cents...

Vita

At 11:59 AM 8/7/01 -0700, Bradford wrote:

<snip>This is good stuff. One criticism I have heard about Dr. Kopits (and

which

>is extremely valid, if true) is that he keeps his knowledge to himself. As

>far as I am aware, Kopits has never published a anything like a textbook

>containing his vast knowledge and expertise. It's a shame, because to LPs

>and their doctors, such a book would be worth it's weight in gold.

>Regarding the book and lectures by Paley and Herzenberg -- many people

>would not want to undergo the type of correction they prescribe;

>nevertheless, their efforts at sharing of their knowledge and experience

>should be applauded.

>

<snip>> Some of the operations we perform are specifically designed to prevent

>> the inevitable arthritis that will develop in the hips and knees of

>> some dysplasia conditions (e.g. epiphyseal dysplasia,

>> pseudoachondroplasia).

>

>If these operations are proven to be effective in preventing arthritis,

>then this is excellent. It makes sense that an orthopedic surgeon could

>significantly postpone the onset of arthritis through limb and joint

>straightening. Osteoarthritis is the wearing away of cartilage in the

>joint; if they can reduce the wear and tear on the cartilage, it will last

>longer.

>In summary, I think that we should welcome and encourage doctors to be

>members of this list. However, I agree with Randy that they shouldn't use

>it as marketing tool. They should become real live members of the

>community and offer free expert advice via the list. And they would

>probably find it more effective in gaining clients than simply posting an

>advertisement.

>

>- Dave

<snip>

Vita Gagne

rgagne@...

[Guest guest]

Vita and all,

As I said before, the idea to post something on the list was mine, not Dr.

Paley and Dr. Herzenberg's. When people started writing and asking about

doctors to see I suggested they might want to put something together. I

cannot respond to your skepticism with regards to what they say about

arthritis since I am not a medical professional, but I can respond to your

claims about their intentions in deciding to post something on this list,

they were good. When the idea first came to me I hesitated because I

feared people would respond this way, but I just felt that if they could

help even one person, it would be worth the rest. They are not " soliciting

patients on the listserv, " they are offering to help those who want

it. These are good men and accomplished surgeons who have dedicated their

lives to helping others.

I also want to respond to the claim that lengthening people with dwarfism

is their main business. It most certainly is not. That is a very small

fraction of their business. The main groups they help are people who have

suffered traumatic injuries which have left one limb shorter than the other

and children with congenital shortening (PFFD, tibial hemimelia, fibular

hemimelia, etc.), many of whom would lose the effected limb if it were not

for these men. In both of those cases deformity correction is done

alongside lengthening. Dr. Herzenberg is also one of the leaders in

treating babies with club feet. These doctors help many people and the

only point of the message I passed along was to let people know they were

there to help people on here as well. Gillian.

[Guest guest]

On Tue, 7 Aug 2001, Vita Gagne wrote:

> It's a misconception that Dr. Kopits has not shared his knowledge with

> other doctors. He wrote the textbook, " Human Achondroplasia : A

> Multidisciplinary Approach (Basic Life Sciences, Vol 48) " with

> Benedetto ttii, as well as many medical journal articles over the

> years. His largest project thus far is near completion; it is a set of

> surgical video tapes which will be distributed to medical schools in hopes

> of teaching a whole new generation of doctors how to treat LP orthopedic

> problems.

I'm very happy to learn this!

Regarding these other doctors being limb-lengtheners, I agree that

LPs/parents should approach them cautiously. If they are honest and

forthright doctors, they should present all sides of the limb-lengthening

issue equally and help their patients understand that limb-lengthening

isn't necessary to lead a life that is just as happy and productive as the

average person's.

I just don't think it's logical to condemn them outright for having

performed limb-lengthening surgeries if there is a possibility that they

could also be a valuable resource for corrective orthopaedic surgery. And

from what Gillian has said, it doesn't sound like they are just out to

make a buck.

- Dave

[Guest guest]

I would like to add my two cents and background on Dr. Herzenberg from

the previous letter discussion. Dr. Herzenberg practiced at University

of Michigan Hospital in the ortho dept before he went to Baltimore. He

participtaed in our first LPA sponsored Short Stature Clinic many years

ago. . .along with Dr. . He was the MD for many of our locals for

awhile in Michigan. Then he dropped of site leaving U of M. I was very

concerned a year or so later when I learned he was participating in Limb

lenghthening procedures. . .in Baltimore of all places. I was never

really comfortable with him . . .and I guess that ideology confirmed by

discomfort. . .

From another perspective. . .as I previously stated. . .and our MAB doc's

would concure, the long term effects. .. . .both positve and negative

are still out on leg lengthening or the Ilizorof(sp?) techinique of

straightening our bowed legs. Where we may have philosophical

differences on whether a LP should use this technique to become "

taller " , I am hesitant to place value decisions on the procedure and

the instruments. . Each case is different. My, son just had the

second leg surgery in 10months. His ortho. . .who is the head MD at U of

M briefly mentioned using the Ilizorof procedure. . . I said no because

could not/would not tolerate the utensil on his leg for any period

of time and would probably swear that his leg was going to come apart

every time we turned it. . .it would be a major trauma for him. . .but

that's Chris. . .I know of others who have used the same doctor , and did

use the Ilizorof and said it worked very well for their child.

So let's remember each case and physician may have different

implications.

As far as their " advertising " on the list serve. . .that's a bit tacky. .

..

But so is Kopits referring people to only one doctor and not others. .

..who have experience and are members of the LPA MAB.

marge

[Guest guest]

Dear Randy, Marge and List,

Yes, when you think about it in one way the main thing Dr. Paley and Dr.

Herzenberg do is lengthen limbs, I did not say otherwise, I said

lengthening people with dwarfism is not their main business. They have

treated over 5000 people and if 5% were LPs I would be surprised,

especially since Dr. Paley has many of them talk to me beforehand and I

know I have not spoken to that many people. And while I understand peoples

reservations about lengthening people with dwarfism, I find it hard to

believe many would have a problem with their lengthening people where one

limb is shorter than the other, or more so reconstructing and lengthening

an entire leg of someone with PFFD so it is functional. You want me to

substantiate my claim that without these men many of the children with

congenital abnormalities would lose the effected limb. Here is a link to a

story the mother of a boy with PFFD wrote about their experience and the

many doctors they went to see before they found Dr.

Paley. http://www.ohio.net/~pffdvsg/req-bestanswr.htm In many cases it

is not a case of other doctors not being able to help, though I doubt

anyone has the experience Dr. Paley does and with something like this you

want experience, but not being willing. Amputation is how these cases are

typically handled, but fortunately many parents are not willing to accept

that.

As for long term effects, I am not sure how long term you are looking for,

but the Ilizarov technique had been used in Russia for over thirty years

before Dr. Paley started in Canada and then Baltimore. I know each case is

different, and I put this forth as an option for those who want it use

it. I am in no way saying anyone should go to Dr. Paley and Dr.

Herzenberg. I just wanted people to know they can help them. They are

viewed by many here as the doctors who make LPs taller and while they can

do that for those who want them to, it is far from all they do. And as for

Dr. Herzenberg, I have known him since he joined Dr. Paley in 1991 and I

have to say he is a very good and decent person who cares greatly about his

patients and all people in general. Just my opinion. Gillian.

[Guest guest]

Well, I for one would jump up and down and sing and

dance should I have another major ortho issue and be

able to walk into a doctor who actually KNEW something

about ANY type of dwarfism.

I may go to an OB/GYN who preforms abortions, I would

never have one, and as a Catholic feel they are

morally wrong, but guess what - - if he/she is a good

doc who understands what I need, I'd rather have them

than someone who agrees with my PERSONAL OPINION but

has no clue 'bout my plumbing.

**NOT** that I am equating limb lengethening with

abortion or that I find it morally repugnant. I think

it is a PERSONAL choice, and, if it had been available

when I was young, I would have considered it as an

option. I also am considering a tummy tuck. I also

have a tattoo. Why must we rake those who choose to

modify their bodies over the coals?? However, that is

an old, dead horse on this listserv.

I'll bet you lunch that 90% of you have sat in a

doctor's office at some time in your life and educated

that doctor on dwarfism. I have a social aquaintance

who was finishing her last year of med school to go

into family practice and at a party asked me if I

could tell her something about dwarfism. It had NEVER

been mentioned in all of her training.

If you have issues with these guys, okay, but don't

beat the hell out of em for offering!!

My opinion.

__________________________________________________