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

[Guest guest]

,

You must of heard me scream as well........each form of dwarfism is so

individually unique and require very precise and specific surgeries to

correct those certain medical issues. It takes years of working specifically

with these individual forms of dwarfism and know exactly what needs to be

done, the timeframe to do it in and the best long term results that will be

come from the surgery. You cannot accomplish this with only performing

surgery on a few individuals.

Trudy

[Guest guest]

In a message dated 8/7/2001 1:10:56 PM Pacific Daylight Time,

gillianmueller@... writes:

>

This website only has an average gentleman, not an LP. I thought it would

have an LP, tell their own personal experience.

[Guest guest]

Gillian,

That is good these doctors help those patients who have suffered traumatic

injuries, congenital abnormalities or need deformity corrections but these

are average size patients.......patients with dwarfism cannot be compared to

average size patients when it comes to this. That has been the problem for

years and years. Many doctors treat dwarfs as if they are average persons.

This is wrong! It happens because that is the way they were taught in

medical school. Treating orthopedic problems in dwarfisms is a whole

different ballgame....

Unless they have worked years and years understanding the distortion of the

spine, the laxity of the joints or whatever is affected by the dwarfism,

trying to correct it as if the person is average does not work and it never

will.

I know this from experience with my son who has achondroplasia, oh how I know

this!!!

Trudy (mom to Caleb 14, achondroplasia)

[Guest guest]

Marge,

Dr. Kopits did not just refer his patients to one doctor. I receive his

wonderful letter along with a 3 pages of 'Physician Referrals'......doctors

from every service that is needed by patients with dwarfism. Where did you

hear that he only referred to one doctor?

Trudy (mom to Caleb, achondroplasia)

[Guest guest]

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

> This website only has an average gentleman, not an LP. I thought it would

> have an LP, tell their own personal experience.

This doesn't surprise me. I'm sure limb lengthening is used a lot more on

average-sized people who have one leg shorter than the other.

[Guest guest]

Marge,

There are actually 8 orthopedic surgeons Dr. Kopits made referrals to. As

far as him boycotting Hopkins, I didn't see that. There are many doctors on

the list in areas of service needed by those with dwarfisms that are Hopkins

affiliated.

Trudy

[Guest guest]

Vita

I agree with your comments. If many will recall, I was once doubtful of DR

Kopits true desire to help LP's and felt, as the general feeling was, that he

was more interested in furthering his career than helping us! Well, let me

tell you all right now that I was sadly mistaken. This great surgeon, yes

spent a great deal of time collecting data, talking with parents, compiling

surveys, training many young ortho residents as well as established surgeons

(wanting hands on training with the great surgeon). He spent his convention

week seeing patients from dawn to midnight and still found time to come out

and " Play " with us(patients & friends). I'm sure like any other surgeon he had

surgeries that didn't work out as he'd hoped. Just think about the

diastrophic foot and hip problem. I know several children who've had

surgeries to correct or try and release the heel cord so the child can be

somewhat flat footed, only to have it be a failure!!! There are some bones,

muscles, and tendons in the body that just plain refuse to be remolded!!!!!

That's life! " Dr. K " knows all of this yet he kept trying to find new ways to

make standing/walking possible.

Yes, I am aware that DR. K. co-authored books about his work and continues to

work, on yet another one in-between his on struggle to beat this monster in

his head. This monster that wants to keep him from completing his life long

dream.

DR. K. has held many a phone conference with other surgeons who are faced

with a unique case in an LP. He will share is knowledge with these surgeons

and even walk them through the surgery.

As for DR Paley(pronounced pay-lee) and company, this is a horse of a

different color! I took part in the 20/20 TV program on limb lengthening and

how it could impact a little persons life. What the producers didn't share

with was that they were more interested in promoting DR Paley and his group

and all the fantastic work they were doing to " change life for the better for

little people " ! The LPA view really didn't matter to them. They just wanted

to show they had atleast approached us. Also, what they didn't tell you was

that this group doesn't bother with the psych evaluations, the parents true

feelings, the child's feelings and how many disasters Paley has had with

LP's! Believe me, I know about his failures, I know about the drug addicts,

I know about the patients that are in worse share now then before he got his

hands on them! Being President of LPA gives you certain privileges to

information.

As for other doctors to take over DR. K. patients, this is up the their

families. Yes, there are a good many surgeons on the MAB, but not all are as

experienced as Dr. K. He almost talked me into letting him do my hip

replacements, but I said " No,' cause I wasn't ready to go under the knife!

LPA MAB has DRS. Basset in St. Louis, a top notch ortho surgeon with a

great deal of experience and a doll to look at, DR. Will Mackenzie at Du

Pont, another top notch pediatric ortho surgeon who has done wonders with

his patients and great to look at too! DR. Vernon Tolo in LA is a seasoned

surgeon who worked with DR. K years ago. This surgeon has also done wonders

with his patients. He has vast experience with

diastrophics(children/adults).DR. Rodney Beals in Portland, Or. is the

surgeon to see (experienced with diastrophics/achons)well known in LPA Med.

circle.DR.Jay Bowden at DuPont is another well liked and experienced ortho

surgeon.DR. Bradford in San Francisco trained with DR Winter. DR

in Dallas works with Texas ish Rite Children's plus has his

own clinic where he sees adult patients. I personally know Jimmy . DR

Goldberg in Boston is the surgeon well liked and experienced. DR

Herring in Dallas at the ish Rite Shriners Hospital is the top

surgeon. This doctor is fabulous, funny and caring. I've know him for a

number of years and he refers LP prospects to me. DR Lindseth in

Indianapolis at the Riley Children's Hospital has experience with

diastrophics and other dwarfisms.DR Matejczyk in Cleveland is a great

surgeon. She did Bobby Van Etten's hips/knees. DR Gray in Atlanta is

well known and liked by the LP group.

Sorry to be so drawn out with this reply. Just had to add my 2 cents.

C.

[Guest guest]

......

BRAVO.......what a wonderful letter & tribute Dr. Kopits as well as adovcate

for other LP's in need of ortho consultation. I commend you on your

willingness to share this with the listserve. Needless to say, there are

other excellent orthopedic surgeons around the United States.

Orothopedics in dwarfisms is not an easy fix for anyone

doctor......knowledge, understanding and experience are the keys. This is not

acquired over night.

I also have to add Dr. Lonstein at the Twin Cities Spine Center. He

studied under Dr. Winter. He has an excellent understanding of the

distortion of the spine in dwarfisms. My son recently had a lumbar

anterior/posterior fusion done for post-laminectomy kyphosis. It is not an

easy task to correct kyphosis in achondroplasts to say the least. He did an

excellent job. He is very good to explain and re-explain what he is trying

to do and how he will do it.

Again, I feel letters which encourage and help others is what this listserve

is all about. At least for me, as a parent of a child with a dwarfism.

[Guest guest]

Another addition to this growing list of surgeons. Dr. D. Pizzutillo,

Director of the Orthopaedic Center for Children, St. 's' Hospital for

Children (Philadelphia, PA), and Professor of Orthopaedic Surgery and

Pediatrics, MCP-Hahnemann School of Medicine. Continuum care extends beyond the

age of 21, by the way. For more information call, 215.427.3131

Dr. Pizzutillo has successfully treated Rockwood (LPA's past Adoption

Coordinator), myself (diagnosis EvC) and our two children (achondroplasia),

among many other LP's.

Bill, & Kids

Aucott@...

[Guest guest]

From: " & Aucott " <Aucott@...>

> Dr. Pizzutillo has successfully treated Rockwood (LPA's past

Adoption Coordinator), myself (diagnosis EvC) and our two children

(achondroplasia), among many other LP's.

What a shame he isn't treating her for her present condition! I bet HE

wouldn't condone enforced isolation, and a complete black out on his

patients progress.