Re: Lilia's first appointment

[Guest guest]

Dear Nikki, Andy and lilia,

WOW! I am sorry to hear the the appt. went like that, but I am not surprised. It

is very similar to my experience with our first ortho. ped. surg. appt., and my

guess, very similar to many on this board. You asked great questions. My first

chuckle was when you mention he said he has treated 1000 infants (10-15 this

weeks). What ever!!! If that is true, he has an epidemic in his area. The next

chuckle was when he said come back in 6 months. No way! Too long. I am glad you

have contacted Erie, and can't wait until they get back to you. IF it is true

that the RVAD is infact " 0 dregrees " , than that would be a great sign that it

could resolve, however, at this point, with some of his replies, I question

whether or not he truly knows how to correctly measure it ( a lot of docs don't)

and/or if he even really sat down to measure it. The other good news is that it

has stayed around 20 degrees. It is still a small curve, but that doesn't mean

it should be ignored. He said it is too

small to have shape? If it's too small to have shape, how did he even measure

it to be 20 degrees? " Casting a baby has negatve effects on growth " is also not

true. Cole has been in a cast for a year now, and he is growing just fine.

Definetly in the above average for heigth area. Spinal fusion in young kids is

what has negative effects on growth.

Good for you going in there with questions. I'm sure he was shocked and didn't

appear to have answers to all your questions. I still think an MRI is the next

step. I'll be interested as to what other members of this board have to comment.

Hang in there. Lilia will be O.K. in the long run. Let us know when you hear

back from Erie.

/Cole

ncivettini <ncivettini@...> wrote:

Well, we didn't get off to the best start with Lilia's doctor.

Actually, it was horrible. I have rarely felt so belittled in my life.

Let me just say the good news is that Lilia's curve has held at 21

degrees for the last two months. J So no complaints there at all…

but the trauma of dealing with Dr. Weinstein really put a damper on what

should have been a happy visit. I was told that I was distrusting, that

I didn't understand what I was talking about, and that if he ordered

an x-ray, he would be treating me, not my daughter. See the

blow-by-blow description below.

We met Dr. Weinstein at Iowa Children's this morning. One of the

University fellows came in first to take a history and check out

Lilia's back. He seemed as though he had never held a baby before

in his life (in fact, I'd bet on it), but we figured that it was

fine because he was not the one who would be making decisions about

Lilia. Then Weinstein came in… very friendly, baby-talking with

Lilia, big smiles. He (1) told us that we had nothing to worry about

and that there really wasn't a problem at all, (2) lifted up the

back of Lilia's shirt while Andy held her, he visually looked at her

back, but didn't touch it, and (3) told us that we shouldn't

concern ourselves and we should come back in six months. THAT WAS IT!!!

He didn't even tell us what the degree of curvature was! I said

that I had several questions I wanted to ask him, and he said, with a

big smile, " Of course! Please ask. " Here are the questions I

asked and the responses I got (verbatim to the best of my memory –

the key phrases that will make you gasp are definitely

word-for-word… I'm not likely to forget the experience of being

treated this way anytime soon).

(1) Should Lilia have an MRI? I've read that it is the only way

to rule out congenital scoliosis.

Weinstein: You don't understand the difference between congenital

and idiopathic scoliosis. You're confusing them. I can't see

any deformities in the vertebra. It is not congenital. [Then he launched

into this analogy about cutting a roll of cookie dough – it was

ridiculous].

(2) Should Lilia's x-rays be repeated? They are now two months

old, and in six months they will be eight months old.

Weinstein: No, it is unnecessary to expose her to radiation. It is very

harmful to babies. A new study has revealed that radiation exposure in

babies causes breast cancer.

a. Even six months seems like a long time. Can't it progress

quite a bit in babies in that amount of time?

Weinstein: NO. One degree a month would be considered very fast

progression.

(3) What is the COBB angle?

Weinstein: At her age, the COBB angle is meaningless. She could have

just been lying funny on the x-ray table. If Dad picks her up right

now, her curve would straighten. It is totally unreliable to measure

the COBB angle.

a. I'd like to know anyway.

Weinstein: It is very mild, nothing to worry about.

b. I'd like the measurement.

Sure. [At this point, the fellow goes over to the computer and measures

the angle – it is 21 degrees]

(4) Where is the curve located?

Weinstein: It is thoracolumbar.

a. Which vertebra are involved?

Weinstein: between T11 and L1 is the apex.

At this point, he says, " Look, I can see that you're very

distrusting and doubting. Let me reassure you that I have treated

thousands of patients, and you have nothing to worry about. I could

order an MRI or x-rays if you want, but I'D BE TREATING YOU, NOT

YOUR DAUGHTER. If you brought the articles you've read, I'd be

happy to go over them with you. " I responded that I didn't have

them with me. He said, " Things on the internet are not filtered.

You can find a study to support any horrible thing you want to hear. If

you'd like, I can direct you to some reliable sources on the topic.

Don't believe everything you read on the internet. There's a

study to support everything, and you can drive yourself crazy. "

(5) What is the RVAD?

Weinstein: [Laughs] – it's virtually zero.

a. So, you have measured it?

Weinstein: [smirks] Yes, they are parallel.

(6) Is there any rotation?

Weinstein: [LAUGHS AGAIN] – there is very little rotation.

a. Do you have a measurement?

Weinstein: It isn't anything to worry about.

(7) What is the shape of her curve?

Weinstein: It is too mild to have a shape.

a. Well, is there one curve in one direction, or does it curve back

like an " S? "

Weinstein: It is very mild, you shouldn't worry too much about it.

(8) How many infants have you treated?

Weinstein: [Huge smirky smile] Thousands.

a. Wow, I thought it was very rare in infants.

Weinstein: Well, I should say about a thousand. I've been doing

this for a long time. We have 2,000 scoliosis patients; 500 new

patients a year.

b. And how many of them are infants?

Weinstein: Well, 10-15 of the patients this week are infants.

c. What percentage of your patients would you say are infants?

Weinstein: a small percentage.

(9) At what degree of curvature would you begin treatment?

Weinstein: That's really not relevant at this point, as treatment

isn't even useful until at least one year of age. I mean, if she

comes back in six months, and her curve is 40 degrees, we might put her

in a little plastic brace. But she doesn't really have a problem,

and treating a baby of this age won't do anything.

At this point, Andy and I both new that there was no way we were going

to have him as Lilia's doctor, so we gave up trying to get answers.

I had been on the verge of tears out of frustration and anger, and at

this point, I broke down crying and couldn't talk anymore. Andy

took over.

(10) Andy: Have you ever done casting?

Weinstein: [big sly smile] Yes. But I would certainly not cast a baby,

as it has negative effects for growth and leads to deformities of the

chest and rib cage. Look, if you want x-rays today, we'll take

x-rays today.

Andy looked at me, and I nodded. He turned back to Weinstein and said

that we wanted x-rays. They took one x-ray from the front. When we got

back to the exam room, Weinstein said that it looked exactly the same,

but that we shouldn't pay attention to the curve because it is a

very unreliable measure in infants. Then he said that if we weren't

comfortable with him, he would be happy to refer us for a second

opinion. I asked where he would refer us, and he said either

Minneapolis, Chicago, or St. Louis didn't say which hospitals or

doctors). He told us to call his receptionist and she would take care

of a referral.

Well, that's the whole story. Are experiences like this common? I

figured that I'd meet with some resistance, or that the doctor would

be surprised that I had all these questions, but I didn't expect to

be treated like a complete idiot or to basically be told to my face that

I was being an overzealous, overprotective, attention-seeking mother

(even if he was thinking it). I was very cordial, I never told him that

I didn't believe him – the only thing I actually disagreed with

him on outright was that I though six months was too long to wait for a

follow-up. Oh, and the " reliable sources " I'm supposed to

read… a chapter on idiopathic scoliosis from a textbook that

Weinstein edited. It has less than two pages on bracing, one paragraph

on Risser casting, and 29 pages on surgery.

I called the Shriners referral number from their website to see if we

can get Lilia in there. The woman told us that we would have to go to

the hospital closest to us, which would be Twin Cities, MN. I asked if

there was any chance we could get in to Erie, so she connected us with

them. I left a message for someone there and am waiting for a reply. I

really hope Lilia gets in there – I can't imagine taking her

back to Weinstein, and he's the only one in Iowa who treats infants.

Thanks for listening to my long-winded rant! I had to let it all out,

and I'm trying to be constructive with my frustration. I figured at

least something positive might come of venting to you all, since you

might have advice or reassurances for us. I'm only glad that Lilia

seems to be fine right now and that I have you as resources!

Nikki, Andy, and Lilia (June 3, `06)

[Guest guest]

Run as fast as you can from this guy!

Your treatment by Weinstein is appalling, but, unfortunately, not at all

unusual. I have a friend who is a doctor and she told me when we started this

journey that orthopedists are notorious for having God-complexes and she is

right! I will tell you they are not at all like that at Shriners.

The Shriners in MN does not do the casting...you will definitely want to go to

Erie.

I think it is crazy that he wouldn't treat her until she is a year old. By then

she could be at 100 degrees and beyond the point where casting would help. Ian

stayed at 27 degrees for a long time and then- BOOM- his curves started

progressing very rapidly. So, you have every right to question him on waiting 6

months for a follow up x-ray.

I also disagree about the MRI. An x-ray can't tell you if the spinal cord is

tethered. If left untreated, a tethered spinal cord can lead to prermanent

damage. IMO, that is just BASIC stuff that he should know.

Additionally, Mehta's article is not an " internet " article. Her study is

published in a well known medical journal (The Bone & Joint journal or something

like that - the exact name escapes me for the moment.)

I have to run out the door right now, but will write more when I have some more

time.

Noelle (12-2-01)

Ian (8-15-04)

Lilia's first appointment

Well, we didn't get off to the best start with Lilia's doctor.

Actually, it was horrible. I have rarely felt so belittled in my life.

Let me just say the good news is that Lilia's curve has held at 21

degrees for the last two months. J So no complaints there at all.

but the trauma of dealing with Dr. Weinstein really put a damper on what

should have been a happy visit. I was told that I was distrusting, that

I didn't understand what I was talking about, and that if he ordered

an x-ray, he would be treating me, not my daughter. See the

blow-by-blow description below.

We met Dr. Weinstein at Iowa Children's this morning. One of the

University fellows came in first to take a history and check out

Lilia's back. He seemed as though he had never held a baby before

in his life (in fact, I'd bet on it), but we figured that it was

fine because he was not the one who would be making decisions about

Lilia. Then Weinstein came in. very friendly, baby-talking with

Lilia, big smiles. He (1) told us that we had nothing to worry about

and that there really wasn't a problem at all, (2) lifted up the

back of Lilia's shirt while Andy held her, he visually looked at her

back, but didn't touch it, and (3) told us that we shouldn't

concern ourselves and we should come back in six months. THAT WAS IT!!!

He didn't even tell us what the degree of curvature was! I said

that I had several questions I wanted to ask him, and he said, with a

big smile, " Of course! Please ask. " Here are the questions I

asked and the responses I got (verbatim to the best of my memory -

the key phrases that will make you gasp are definitely

word-for-word. I'm not likely to forget the experience of being

treated this way anytime soon).

(1) Should Lilia have an MRI? I've read that it is the only way

to rule out congenital scoliosis.

Weinstein: You don't understand the difference between congenital

and idiopathic scoliosis. You're confusing them. I can't see

any deformities in the vertebra. It is not congenital. [Then he launched

into this analogy about cutting a roll of cookie dough - it was

ridiculous].

(2) Should Lilia's x-rays be repeated? They are now two months

old, and in six months they will be eight months old.

Weinstein: No, it is unnecessary to expose her to radiation. It is very

harmful to babies. A new study has revealed that radiation exposure in

babies causes breast cancer.

a. Even six months seems like a long time. Can't it progress

quite a bit in babies in that amount of time?

Weinstein: NO. One degree a month would be considered very fast

progression.

(3) What is the COBB angle?

Weinstein: At her age, the COBB angle is meaningless. She could have

just been lying funny on the x-ray table. If Dad picks her up right

now, her curve would straighten. It is totally unreliable to measure

the COBB angle.

a. I'd like to know anyway.

Weinstein: It is very mild, nothing to worry about.

b. I'd like the measurement.

Sure. [At this point, the fellow goes over to the computer and measures

the angle - it is 21 degrees]

(4) Where is the curve located?

Weinstein: It is thoracolumbar.

a. Which vertebra are involved?

Weinstein: between T11 and L1 is the apex.

At this point, he says, " Look, I can see that you're very

distrusting and doubting. Let me reassure you that I have treated

thousands of patients, and you have nothing to worry about. I could

order an MRI or x-rays if you want, but I'D BE TREATING YOU, NOT

YOUR DAUGHTER. If you brought the articles you've read, I'd be

happy to go over them with you. " I responded that I didn't have

them with me. He said, " Things on the internet are not filtered.

You can find a study to support any horrible thing you want to hear. If

you'd like, I can direct you to some reliable sources on the topic.

Don't believe everything you read on the internet. There's a

study to support everything, and you can drive yourself crazy. "

(5) What is the RVAD?

Weinstein: [Laughs] - it's virtually zero.

a. So, you have measured it?

Weinstein: [smirks] Yes, they are parallel.

(6) Is there any rotation?

Weinstein: [LAUGHS AGAIN] - there is very little rotation.

a. Do you have a measurement?

Weinstein: It isn't anything to worry about.

(7) What is the shape of her curve?

Weinstein: It is too mild to have a shape.

a. Well, is there one curve in one direction, or does it curve back

like an " S? "

Weinstein: It is very mild, you shouldn't worry too much about it.

(8) How many infants have you treated?

Weinstein: [Huge smirky smile] Thousands.

a. Wow, I thought it was very rare in infants.

Weinstein: Well, I should say about a thousand. I've been doing

this for a long time. We have 2,000 scoliosis patients; 500 new

patients a year.

b. And how many of them are infants?

Weinstein: Well, 10-15 of the patients this week are infants.

c. What percentage of your patients would you say are infants?

Weinstein: a small percentage.

(9) At what degree of curvature would you begin treatment?

Weinstein: That's really not relevant at this point, as treatment

isn't even useful until at least one year of age. I mean, if she

comes back in six months, and her curve is 40 degrees, we might put her

in a little plastic brace. But she doesn't really have a problem,

and treating a baby of this age won't do anything.

At this point, Andy and I both new that there was no way we were going

to have him as Lilia's doctor, so we gave up trying to get answers.

I had been on the verge of tears out of frustration and anger, and at

this point, I broke down crying and couldn't talk anymore. Andy

took over.

(10) Andy: Have you ever done casting?

Weinstein: [big sly smile] Yes. But I would certainly not cast a baby,

as it has negative effects for growth and leads to deformities of the

chest and rib cage. Look, if you want x-rays today, we'll take

x-rays today.

Andy looked at me, and I nodded. He turned back to Weinstein and said

that we wanted x-rays. They took one x-ray from the front. When we got

back to the exam room, Weinstein said that it looked exactly the same,

but that we shouldn't pay attention to the curve because it is a

very unreliable measure in infants. Then he said that if we weren't

comfortable with him, he would be happy to refer us for a second

opinion. I asked where he would refer us, and he said either

Minneapolis, Chicago, or St. Louis didn't say which hospitals or

doctors). He told us to call his receptionist and she would take care

of a referral.

Well, that's the whole story. Are experiences like this common? I

figured that I'd meet with some resistance, or that the doctor would

be surprised that I had all these questions, but I didn't expect to

be treated like a complete idiot or to basically be told to my face that

I was being an overzealous, overprotective, attention-seeking mother

(even if he was thinking it). I was very cordial, I never told him that

I didn't believe him - the only thing I actually disagreed with

him on outright was that I though six months was too long to wait for a

follow-up. Oh, and the " reliable sources " I'm supposed to

read. a chapter on idiopathic scoliosis from a textbook that

Weinstein edited. It has less than two pages on bracing, one paragraph

on Risser casting, and 29 pages on surgery.

I called the Shriners referral number from their website to see if we

can get Lilia in there. The woman told us that we would have to go to

the hospital closest to us, which would be Twin Cities, MN. I asked if

there was any chance we could get in to Erie, so she connected us with

them. I left a message for someone there and am waiting for a reply. I

really hope Lilia gets in there - I can't imagine taking her

back to Weinstein, and he's the only one in Iowa who treats infants.

Thanks for listening to my long-winded rant! I had to let it all out,

and I'm trying to be constructive with my frustration. I figured at

least something positive might come of venting to you all, since you

might have advice or reassurances for us. I'm only glad that Lilia

seems to be fine right now and that I have you as resources!

Nikki, Andy, and Lilia (June 3, `06)

[Guest guest]

I had the same experience, almost exactly, the first three docs I went to. I

was very fortunate to finally find one who used to work with Dr. D'Astous in

Canada. I know it's very frustrating to say the least, but you are being such

an awesome mommy and doing exactly what you need to do for her. When Erie calls

you back, ask them to do an app over the phone. You might even consider over

nighting copies of her x-rays to Dr. . When they call you to book your

appt, make sure you ask them to schedule OR time too, in addiiton to your clinic

visit, so you won't have to make two trips. Sorry you have to go through this,

just remember you are her only advocate. Stay stong and just remember you're

starting so early, and you're doing such a great job, asking the right

questions, getting her where she needs to be, and making sure she's treated

properly! Take a deep breath and move forward. This only goes to show how much

more education is really needed out there. I am

really interested in knowing that he has 10-15 infant pts this week alone. I

didn't know that we had 10-15 pts in one state, much less all to be seen in one

week. Very interesting!

ncivettini <ncivettini@...> wrote:

Well, we didn't get off to the best start with Lilia's doctor.

Actually, it was horrible. I have rarely felt so belittled in my life.

Let me just say the good news is that Lilia's curve has held at 21

degrees for the last two months. J So no complaints there at all…

but the trauma of dealing with Dr. Weinstein really put a damper on what

should have been a happy visit. I was told that I was distrusting, that

I didn't understand what I was talking about, and that if he ordered

an x-ray, he would be treating me, not my daughter. See the

blow-by-blow description below.

We met Dr. Weinstein at Iowa Children's this morning. One of the

University fellows came in first to take a history and check out

Lilia's back. He seemed as though he had never held a baby before

in his life (in fact, I'd bet on it), but we figured that it was

fine because he was not the one who would be making decisions about

Lilia. Then Weinstein came in… very friendly, baby-talking with

Lilia, big smiles. He (1) told us that we had nothing to worry about

and that there really wasn't a problem at all, (2) lifted up the

back of Lilia's shirt while Andy held her, he visually looked at her

back, but didn't touch it, and (3) told us that we shouldn't

concern ourselves and we should come back in six months. THAT WAS IT!!!

He didn't even tell us what the degree of curvature was! I said

that I had several questions I wanted to ask him, and he said, with a

big smile, " Of course! Please ask. " Here are the questions I

asked and the responses I got (verbatim to the best of my memory –

the key phrases that will make you gasp are definitely

word-for-word… I'm not likely to forget the experience of being

treated this way anytime soon).

(1) Should Lilia have an MRI? I've read that it is the only way

to rule out congenital scoliosis.

Weinstein: You don't understand the difference between congenital

and idiopathic scoliosis. You're confusing them. I can't see

any deformities in the vertebra. It is not congenital. [Then he launched

into this analogy about cutting a roll of cookie dough – it was

ridiculous].

(2) Should Lilia's x-rays be repeated? They are now two months

old, and in six months they will be eight months old.

Weinstein: No, it is unnecessary to expose her to radiation. It is very

harmful to babies. A new study has revealed that radiation exposure in

babies causes breast cancer.

a. Even six months seems like a long time. Can't it progress

quite a bit in babies in that amount of time?

Weinstein: NO. One degree a month would be considered very fast

progression.

(3) What is the COBB angle?

Weinstein: At her age, the COBB angle is meaningless. She could have

just been lying funny on the x-ray table. If Dad picks her up right

now, her curve would straighten. It is totally unreliable to measure

the COBB angle.

a. I'd like to know anyway.

Weinstein: It is very mild, nothing to worry about.

b. I'd like the measurement.

Sure. [At this point, the fellow goes over to the computer and measures

the angle – it is 21 degrees]

(4) Where is the curve located?

Weinstein: It is thoracolumbar.

a. Which vertebra are involved?

Weinstein: between T11 and L1 is the apex.

At this point, he says, " Look, I can see that you're very

distrusting and doubting. Let me reassure you that I have treated

thousands of patients, and you have nothing to worry about. I could

order an MRI or x-rays if you want, but I'D BE TREATING YOU, NOT

YOUR DAUGHTER. If you brought the articles you've read, I'd be

happy to go over them with you. " I responded that I didn't have

them with me. He said, " Things on the internet are not filtered.

You can find a study to support any horrible thing you want to hear. If

you'd like, I can direct you to some reliable sources on the topic.

Don't believe everything you read on the internet. There's a

study to support everything, and you can drive yourself crazy. "

(5) What is the RVAD?

Weinstein: [Laughs] – it's virtually zero.

a. So, you have measured it?

Weinstein: [smirks] Yes, they are parallel.

(6) Is there any rotation?

Weinstein: [LAUGHS AGAIN] – there is very little rotation.

a. Do you have a measurement?

Weinstein: It isn't anything to worry about.

(7) What is the shape of her curve?

Weinstein: It is too mild to have a shape.

a. Well, is there one curve in one direction, or does it curve back

like an " S? "

Weinstein: It is very mild, you shouldn't worry too much about it.

(8) How many infants have you treated?

Weinstein: [Huge smirky smile] Thousands.

a. Wow, I thought it was very rare in infants.

Weinstein: Well, I should say about a thousand. I've been doing

this for a long time. We have 2,000 scoliosis patients; 500 new

patients a year.

b. And how many of them are infants?

Weinstein: Well, 10-15 of the patients this week are infants.

c. What percentage of your patients would you say are infants?

Weinstein: a small percentage.

(9) At what degree of curvature would you begin treatment?

Weinstein: That's really not relevant at this point, as treatment

isn't even useful until at least one year of age. I mean, if she

comes back in six months, and her curve is 40 degrees, we might put her

in a little plastic brace. But she doesn't really have a problem,

and treating a baby of this age won't do anything.

At this point, Andy and I both new that there was no way we were going

to have him as Lilia's doctor, so we gave up trying to get answers.

I had been on the verge of tears out of frustration and anger, and at

this point, I broke down crying and couldn't talk anymore. Andy

took over.

(10) Andy: Have you ever done casting?

Weinstein: [big sly smile] Yes. But I would certainly not cast a baby,

as it has negative effects for growth and leads to deformities of the

chest and rib cage. Look, if you want x-rays today, we'll take

x-rays today.

Andy looked at me, and I nodded. He turned back to Weinstein and said

that we wanted x-rays. They took one x-ray from the front. When we got

back to the exam room, Weinstein said that it looked exactly the same,

but that we shouldn't pay attention to the curve because it is a

very unreliable measure in infants. Then he said that if we weren't

comfortable with him, he would be happy to refer us for a second

opinion. I asked where he would refer us, and he said either

Minneapolis, Chicago, or St. Louis didn't say which hospitals or

doctors). He told us to call his receptionist and she would take care

of a referral.

Well, that's the whole story. Are experiences like this common? I

figured that I'd meet with some resistance, or that the doctor would

be surprised that I had all these questions, but I didn't expect to

be treated like a complete idiot or to basically be told to my face that

I was being an overzealous, overprotective, attention-seeking mother

(even if he was thinking it). I was very cordial, I never told him that

I didn't believe him – the only thing I actually disagreed with

him on outright was that I though six months was too long to wait for a

follow-up. Oh, and the " reliable sources " I'm supposed to

read… a chapter on idiopathic scoliosis from a textbook that

Weinstein edited. It has less than two pages on bracing, one paragraph

on Risser casting, and 29 pages on surgery.

I called the Shriners referral number from their website to see if we

can get Lilia in there. The woman told us that we would have to go to

the hospital closest to us, which would be Twin Cities, MN. I asked if

there was any chance we could get in to Erie, so she connected us with

them. I left a message for someone there and am waiting for a reply. I

really hope Lilia gets in there – I can't imagine taking her

back to Weinstein, and he's the only one in Iowa who treats infants.

Thanks for listening to my long-winded rant! I had to let it all out,

and I'm trying to be constructive with my frustration. I figured at

least something positive might come of venting to you all, since you

might have advice or reassurances for us. I'm only glad that Lilia

seems to be fine right now and that I have you as resources!

Nikki, Andy, and Lilia (June 3, `06)

[Guest guest]

Nikki,

Our 1st and 2nd pediatric orthos also laughed at our questions. Many mothers

(and fathers) on this board know exactly what you are feeling right now. Good

job asking so many questions even after his superior attitude was becoming more

and more apparent. You are awesome and will definitely receive the care and

attention Lilia deserves in Erie. You CAN trust those docs there! I, too,

would over night any x-rays you have to Dr. in Erie. Let us know when

your first appointment is...

Kudos to you and your husband!

& Jake

ncivettini <ncivettini@...> wrote:

Well, we didn't get off to the best start with Lilia's doctor.

Actually, it was horrible. I have rarely felt so belittled in my life.

Let me just say the good news is that Lilia's curve has held at 21

degrees for the last two months. J So no complaints there at all…

but the trauma of dealing with Dr. Weinstein really put a damper on what

should have been a happy visit. I was told that I was distrusting, that

I didn't understand what I was talking about, and that if he ordered

an x-ray, he would be treating me, not my daughter. See the

blow-by-blow description below.

We met Dr. Weinstein at Iowa Children's this morning. One of the

University fellows came in first to take a history and check out

Lilia's back. He seemed as though he had never held a baby before

in his life (in fact, I'd bet on it), but we figured that it was

fine because he was not the one who would be making decisions about

Lilia. Then Weinstein came in… very friendly, baby-talking with

Lilia, big smiles. He (1) told us that we had nothing to worry about

and that there really wasn't a problem at all, (2) lifted up the

back of Lilia's shirt while Andy held her, he visually looked at her

back, but didn't touch it, and (3) told us that we shouldn't

concern ourselves and we should come back in six months. THAT WAS IT!!!

He didn't even tell us what the degree of curvature was! I said

that I had several questions I wanted to ask him, and he said, with a

big smile, " Of course! Please ask. " Here are the questions I

asked and the responses I got (verbatim to the best of my memory –

the key phrases that will make you gasp are definitely

word-for-word… I'm not likely to forget the experience of being

treated this way anytime soon).

(1) Should Lilia have an MRI? I've read that it is the only way

to rule out congenital scoliosis.

Weinstein: You don't understand the difference between congenital

and idiopathic scoliosis. You're confusing them. I can't see

any deformities in the vertebra. It is not congenital. [Then he launched

into this analogy about cutting a roll of cookie dough – it was

ridiculous].

(2) Should Lilia's x-rays be repeated? They are now two months

old, and in six months they will be eight months old.

Weinstein: No, it is unnecessary to expose her to radiation. It is very

harmful to babies. A new study has revealed that radiation exposure in

babies causes breast cancer.

a. Even six months seems like a long time. Can't it progress

quite a bit in babies in that amount of time?

Weinstein: NO. One degree a month would be considered very fast

progression.

(3) What is the COBB angle?

Weinstein: At her age, the COBB angle is meaningless. She could have

just been lying funny on the x-ray table. If Dad picks her up right

now, her curve would straighten. It is totally unreliable to measure

the COBB angle.

a. I'd like to know anyway.

Weinstein: It is very mild, nothing to worry about.

b. I'd like the measurement.

Sure. [At this point, the fellow goes over to the computer and measures

the angle – it is 21 degrees]

(4) Where is the curve located?

Weinstein: It is thoracolumbar.

a. Which vertebra are involved?

Weinstein: between T11 and L1 is the apex.

At this point, he says, " Look, I can see that you're very

distrusting and doubting. Let me reassure you that I have treated

thousands of patients, and you have nothing to worry about. I could

order an MRI or x-rays if you want, but I'D BE TREATING YOU, NOT

YOUR DAUGHTER. If you brought the articles you've read, I'd be

happy to go over them with you. " I responded that I didn't have

them with me. He said, " Things on the internet are not filtered.

You can find a study to support any horrible thing you want to hear. If

you'd like, I can direct you to some reliable sources on the topic.

Don't believe everything you read on the internet. There's a

study to support everything, and you can drive yourself crazy. "

(5) What is the RVAD?

Weinstein: [Laughs] – it's virtually zero.

a. So, you have measured it?

Weinstein: [smirks] Yes, they are parallel.

(6) Is there any rotation?

Weinstein: [LAUGHS AGAIN] – there is very little rotation.

a. Do you have a measurement?

Weinstein: It isn't anything to worry about.

(7) What is the shape of her curve?

Weinstein: It is too mild to have a shape.

a. Well, is there one curve in one direction, or does it curve back

like an " S? "

Weinstein: It is very mild, you shouldn't worry too much about it.

(8) How many infants have you treated?

Weinstein: [Huge smirky smile] Thousands.

a. Wow, I thought it was very rare in infants.

Weinstein: Well, I should say about a thousand. I've been doing

this for a long time. We have 2,000 scoliosis patients; 500 new

patients a year.

b. And how many of them are infants?

Weinstein: Well, 10-15 of the patients this week are infants.

c. What percentage of your patients would you say are infants?

Weinstein: a small percentage.

(9) At what degree of curvature would you begin treatment?

Weinstein: That's really not relevant at this point, as treatment

isn't even useful until at least one year of age. I mean, if she

comes back in six months, and her curve is 40 degrees, we might put her

in a little plastic brace. But she doesn't really have a problem,

and treating a baby of this age won't do anything.

At this point, Andy and I both new that there was no way we were going

to have him as Lilia's doctor, so we gave up trying to get answers.

I had been on the verge of tears out of frustration and anger, and at

this point, I broke down crying and couldn't talk anymore. Andy

took over.

(10) Andy: Have you ever done casting?

Weinstein: [big sly smile] Yes. But I would certainly not cast a baby,

as it has negative effects for growth and leads to deformities of the

chest and rib cage. Look, if you want x-rays today, we'll take

x-rays today.

Andy looked at me, and I nodded. He turned back to Weinstein and said

that we wanted x-rays. They took one x-ray from the front. When we got

back to the exam room, Weinstein said that it looked exactly the same,

but that we shouldn't pay attention to the curve because it is a

very unreliable measure in infants. Then he said that if we weren't

comfortable with him, he would be happy to refer us for a second

opinion. I asked where he would refer us, and he said either

Minneapolis, Chicago, or St. Louis didn't say which hospitals or

doctors). He told us to call his receptionist and she would take care

of a referral.

Well, that's the whole story. Are experiences like this common? I

figured that I'd meet with some resistance, or that the doctor would

be surprised that I had all these questions, but I didn't expect to

be treated like a complete idiot or to basically be told to my face that

I was being an overzealous, overprotective, attention-seeking mother

(even if he was thinking it). I was very cordial, I never told him that

I didn't believe him – the only thing I actually disagreed with

him on outright was that I though six months was too long to wait for a

follow-up. Oh, and the " reliable sources " I'm supposed to

read… a chapter on idiopathic scoliosis from a textbook that

Weinstein edited. It has less than two pages on bracing, one paragraph

on Risser casting, and 29 pages on surgery.

I called the Shriners referral number from their website to see if we

can get Lilia in there. The woman told us that we would have to go to

the hospital closest to us, which would be Twin Cities, MN. I asked if

there was any chance we could get in to Erie, so she connected us with

them. I left a message for someone there and am waiting for a reply. I

really hope Lilia gets in there – I can't imagine taking her

back to Weinstein, and he's the only one in Iowa who treats infants.

Thanks for listening to my long-winded rant! I had to let it all out,

and I'm trying to be constructive with my frustration. I figured at

least something positive might come of venting to you all, since you

might have advice or reassurances for us. I'm only glad that Lilia

seems to be fine right now and that I have you as resources!

Nikki, Andy, and Lilia (June 3, `06)

[Guest guest]

Weinstein: NO. One degree a month would be considered very fast

progression.

In a period of 8 weeks, Ian's curve increased by 16 degrees. I do not see how

he can say this if he was truly seeing 15 infantile scoliosis kids a week. He

would definitely be seeing kids that progress much faster than 1 degree a month

if he was seeing that many cases on a regular basis. Maybe he meant he was

seeing that many infants a week, but perhaps not for scoliosis????

You can get unreliable measurements on an infant if you have x-ray techs that

don't know what they are doing. I had an experience with a measurement being

off on Ian for this reason. BUT, if you have a staff that position the child

correctly (keeping the child still and straight), the Cobb angle can be measured

correctly. I do not know why he would say it was meaningless though. That

makes no sense. Incidentally, I had to ask for the measurements with our first

ortho too and he never went over the x-ray with us. The only reason I saw it

was because I had to take it with us for Ian's MRI.

I agree with . How can the the curve be too mild to have a shape, but

be significant enough to be able to measure? At 27 degrees, Ian's C shaped

curve was easy enough to see.

I'm blown away that he thinks treating a baby wouldn't be useful. I'd love to

email this guy pics of Ian's before his first cast and after the very first

cast. There are plenty of parents here who can testify to the usefulness of

treatment and the earlier the better! There are parents on this site whose

babies were put in to casts as young as 8 months old (maybe even 6 months now

that I think of it) and are having great improvement.

Also, Ian has been growing great in his cast. After his his first cast, he

gained almost 2 inches in height! The Mehta casts are designed to prevent chest

wall deformities. He is thinking of the old style of casting when he talks

about the deformities I would bet.

I am so sorry that you were treated like that. But, it sounds like you asked

all of the right questions and stood your ground. Good for you.

If you do decide to go with Erie. I think you will be very happy with your

decision. We see Dr. Khoury there and just absolutely love him. I completely

trust him and the entire staff there.

I'm going to send you an email with a link to Ian's photo album from Shriners

if you don't mind.

Noelle (12-2-01)

Ian (8-15-04)

Lilia's first appointment

Well, we didn't get off to the best start with Lilia's doctor.

Actually, it was horrible. I have rarely felt so belittled in my life.

Let me just say the good news is that Lilia's curve has held at 21

degrees for the last two months. J So no complaints there at all.

but the trauma of dealing with Dr. Weinstein really put a damper on what

should have been a happy visit. I was told that I was distrusting, that

I didn't understand what I was talking about, and that if he ordered

an x-ray, he would be treating me, not my daughter. See the

blow-by-blow description below.

We met Dr. Weinstein at Iowa Children's this morning. One of the

University fellows came in first to take a history and check out

Lilia's back. He seemed as though he had never held a baby before

in his life (in fact, I'd bet on it), but we figured that it was

fine because he was not the one who would be making decisions about

Lilia. Then Weinstein came in. very friendly, baby-talking with

Lilia, big smiles. He (1) told us that we had nothing to worry about

and that there really wasn't a problem at all, (2) lifted up the

back of Lilia's shirt while Andy held her, he visually looked at her

back, but didn't touch it, and (3) told us that we shouldn't

concern ourselves and we should come back in six months. THAT WAS IT!!!

He didn't even tell us what the degree of curvature was! I said

that I had several questions I wanted to ask him, and he said, with a

big smile, " Of course! Please ask. " Here are the questions I

asked and the responses I got (verbatim to the best of my memory -

the key phrases that will make you gasp are definitely

word-for-word. I'm not likely to forget the experience of being

treated this way anytime soon).

(1) Should Lilia have an MRI? I've read that it is the only way

to rule out congenital scoliosis.

Weinstein: You don't understand the difference between congenital

and idiopathic scoliosis. You're confusing them. I can't see

any deformities in the vertebra. It is not congenital. [Then he launched

into this analogy about cutting a roll of cookie dough - it was

ridiculous].

(2) Should Lilia's x-rays be repeated? They are now two months

old, and in six months they will be eight months old.

Weinstein: No, it is unnecessary to expose her to radiation. It is very

harmful to babies. A new study has revealed that radiation exposure in

babies causes breast cancer.

a. Even six months seems like a long time. Can't it progress

quite a bit in babies in that amount of time?

Weinstein: NO. One degree a month would be considered very fast

progression.

(3) What is the COBB angle?

Weinstein: At her age, the COBB angle is meaningless. She could have

just been lying funny on the x-ray table. If Dad picks her up right

now, her curve would straighten. It is totally unreliable to measure

the COBB angle.

a. I'd like to know anyway.

Weinstein: It is very mild, nothing to worry about.

b. I'd like the measurement.

Sure. [At this point, the fellow goes over to the computer and measures

the angle - it is 21 degrees]

(4) Where is the curve located?

Weinstein: It is thoracolumbar.

a. Which vertebra are involved?

Weinstein: between T11 and L1 is the apex.

At this point, he says, " Look, I can see that you're very

distrusting and doubting. Let me reassure you that I have treated

thousands of patients, and you have nothing to worry about. I could

order an MRI or x-rays if you want, but I'D BE TREATING YOU, NOT

YOUR DAUGHTER. If you brought the articles you've read, I'd be

happy to go over them with you. " I responded that I didn't have

them with me. He said, " Things on the internet are not filtered.

You can find a study to support any horrible thing you want to hear. If

you'd like, I can direct you to some reliable sources on the topic.

Don't believe everything you read on the internet. There's a

study to support everything, and you can drive yourself crazy. "

(5) What is the RVAD?

Weinstein: [Laughs] - it's virtually zero.

a. So, you have measured it?

Weinstein: [smirks] Yes, they are parallel.

(6) Is there any rotation?

Weinstein: [LAUGHS AGAIN] - there is very little rotation.

a. Do you have a measurement?

Weinstein: It isn't anything to worry about.

(7) What is the shape of her curve?

Weinstein: It is too mild to have a shape.

a. Well, is there one curve in one direction, or does it curve back

like an " S? "

Weinstein: It is very mild, you shouldn't worry too much about it.

(8) How many infants have you treated?

Weinstein: [Huge smirky smile] Thousands.

a. Wow, I thought it was very rare in infants.

Weinstein: Well, I should say about a thousand. I've been doing

this for a long time. We have 2,000 scoliosis patients; 500 new

patients a year.

b. And how many of them are infants?

Weinstein: Well, 10-15 of the patients this week are infants.

c. What percentage of your patients would you say are infants?

Weinstein: a small percentage.

(9) At what degree of curvature would you begin treatment?

Weinstein: That's really not relevant at this point, as treatment

isn't even useful until at least one year of age. I mean, if she

comes back in six months, and her curve is 40 degrees, we might put her

in a little plastic brace. But she doesn't really have a problem,

and treating a baby of this age won't do anything.

At this point, Andy and I both new that there was no way we were going

to have him as Lilia's doctor, so we gave up trying to get answers.

I had been on the verge of tears out of frustration and anger, and at

this point, I broke down crying and couldn't talk anymore. Andy

took over.

(10) Andy: Have you ever done casting?

Weinstein: [big sly smile] Yes. But I would certainly not cast a baby,

as it has negative effects for growth and leads to deformities of the

chest and rib cage. Look, if you want x-rays today, we'll take

x-rays today.

Andy looked at me, and I nodded. He turned back to Weinstein and said

that we wanted x-rays. They took one x-ray from the front. When we got

back to the exam room, Weinstein said that it looked exactly the same,

but that we shouldn't pay attention to the curve because it is a

very unreliable measure in infants. Then he said that if we weren't

comfortable with him, he would be happy to refer us for a second

opinion. I asked where he would refer us, and he said either

Minneapolis, Chicago, or St. Louis didn't say which hospitals or

doctors). He told us to call his receptionist and she would take care

of a referral.

Well, that's the whole story. Are experiences like this common? I

figured that I'd meet with some resistance, or that the doctor would

be surprised that I had all these questions, but I didn't expect to

be treated like a complete idiot or to basically be told to my face that

I was being an overzealous, overprotective, attention-seeking mother

(even if he was thinking it). I was very cordial, I never told him that

I didn't believe him - the only thing I actually disagreed with

him on outright was that I though six months was too long to wait for a

follow-up. Oh, and the " reliable sources " I'm supposed to

read. a chapter on idiopathic scoliosis from a textbook that

Weinstein edited. It has less than two pages on bracing, one paragraph

on Risser casting, and 29 pages on surgery.

I called the Shriners referral number from their website to see if we

can get Lilia in there. The woman told us that we would have to go to

the hospital closest to us, which would be Twin Cities, MN. I asked if

there was any chance we could get in to Erie, so she connected us with

them. I left a message for someone there and am waiting for a reply. I

really hope Lilia gets in there - I can't imagine taking her

back to Weinstein, and he's the only one in Iowa who treats infants.

Thanks for listening to my long-winded rant! I had to let it all out,

and I'm trying to be constructive with my frustration. I figured at

least something positive might come of venting to you all, since you

might have advice or reassurances for us. I'm only glad that Lilia

seems to be fine right now and that I have you as resources!

Nikki, Andy, and Lilia (June 3, `06)

[Guest guest]

Well, I want to just interject that our ortho is similar in personality it

sounds to Weinstein. I agree with first off.... RUN! find someone else.

We have the misfortune of only having 2 orthos here in Houston that deal with

infantile scoliosis. However, I have a long unstable history with ours. He gave

us the same attitude this guy is giving you. We were initially told to wait 6

months too which seems to be common practice amongst orthos...I am not saying

that is RIGHT though. Ours did however order an MRI and renal ultrasound as soon

as she was diagnosed to rule out congenital and kidney issues ( spine and

kidneys form around same time inutero ). When it came to discussing treatment

though, he laughed me off and told me I was another stay at home mom internet

doctor. Needless to say, he and I battled and I even had security called on me

in Texas Children's.

At the time Lexi was diagnosed, she was at 21 degrees, which is borderline they

say at the progressive/ self resolving crossroad. Since she was at the border of

the fence, we waited about 2 months and followed up. She had progressed about

4-5 degrees at that time. That is when we took her straight to Erie. Our ortho

here told us he would never treat Lexi again and so on if we casted, which he

does still anyway.

This Weinstein guy sounds like a pompass butt and I would kick him to the curb

if you can. It took awhile for us and our ortho to finally coexist peacefully,

but we didn't get near some of these standoffish answers that you did. It sounds

as if he is just dancing around the issues and treating you with disrespect.

GOOD LUCK!!

Tracey and Lexi

Lilia's first appointment

Well, we didn't get off to the best start with Lilia's doctor.

Actually, it was horrible. I have rarely felt so belittled in my life.

Let me just say the good news is that Lilia's curve has held at 21

degrees for the last two months. J So no complaints there at all.

but the trauma of dealing with Dr. Weinstein really put a damper on what

should have been a happy visit. I was told that I was distrusting, that

I didn't understand what I was talking about, and that if he ordered

an x-ray, he would be treating me, not my daughter. See the

blow-by-blow description below.

We met Dr. Weinstein at Iowa Children's this morning. One of the

University fellows came in first to take a history and check out

Lilia's back. He seemed as though he had never held a baby before

in his life (in fact, I'd bet on it), but we figured that it was

fine because he was not the one who would be making decisions about

Lilia. Then Weinstein came in. very friendly, baby-talking with

Lilia, big smiles. He (1) told us that we had nothing to worry about

and that there really wasn't a problem at all, (2) lifted up the

back of Lilia's shirt while Andy held her, he visually looked at her

back, but didn't touch it, and (3) told us that we shouldn't

concern ourselves and we should come back in six months. THAT WAS IT!!!

He didn't even tell us what the degree of curvature was! I said

that I had several questions I wanted to ask him, and he said, with a

big smile, " Of course! Please ask. " Here are the questions I

asked and the responses I got (verbatim to the best of my memory -

the key phrases that will make you gasp are definitely

word-for-word. I'm not likely to forget the experience of being

treated this way anytime soon).

(1) Should Lilia have an MRI? I've read that it is the only way

to rule out congenital scoliosis.

Weinstein: You don't understand the difference between congenital

and idiopathic scoliosis. You're confusing them. I can't see

any deformities in the vertebra. It is not congenital. [Then he launched

into this analogy about cutting a roll of cookie dough - it was

ridiculous].

(2) Should Lilia's x-rays be repeated? They are now two months

old, and in six months they will be eight months old.

Weinstein: No, it is unnecessary to expose her to radiation. It is very

harmful to babies. A new study has revealed that radiation exposure in

babies causes breast cancer.

a. Even six months seems like a long time. Can't it progress

quite a bit in babies in that amount of time?

Weinstein: NO. One degree a month would be considered very fast

progression.

(3) What is the COBB angle?

Weinstein: At her age, the COBB angle is meaningless. She could have

just been lying funny on the x-ray table. If Dad picks her up right

now, her curve would straighten. It is totally unreliable to measure

the COBB angle.

a. I'd like to know anyway.

Weinstein: It is very mild, nothing to worry about.

b. I'd like the measurement.

Sure. [At this point, the fellow goes over to the computer and measures

the angle - it is 21 degrees]

(4) Where is the curve located?

Weinstein: It is thoracolumbar.

a. Which vertebra are involved?

Weinstein: between T11 and L1 is the apex.

At this point, he says, " Look, I can see that you're very

distrusting and doubting. Let me reassure you that I have treated

thousands of patients, and you have nothing to worry about. I could

order an MRI or x-rays if you want, but I'D BE TREATING YOU, NOT

YOUR DAUGHTER. If you brought the articles you've read, I'd be

happy to go over them with you. " I responded that I didn't have

them with me. He said, " Things on the internet are not filtered.

You can find a study to support any horrible thing you want to hear. If

you'd like, I can direct you to some reliable sources on the topic.

Don't believe everything you read on the internet. There's a

study to support everything, and you can drive yourself crazy. "

(5) What is the RVAD?

Weinstein: [Laughs] - it's virtually zero.

a. So, you have measured it?

Weinstein: [smirks] Yes, they are parallel.

(6) Is there any rotation?

Weinstein: [LAUGHS AGAIN] - there is very little rotation.

a. Do you have a measurement?

Weinstein: It isn't anything to worry about.

(7) What is the shape of her curve?

Weinstein: It is too mild to have a shape.

a. Well, is there one curve in one direction, or does it curve back

like an " S? "

Weinstein: It is very mild, you shouldn't worry too much about it.

(8) How many infants have you treated?

Weinstein: [Huge smirky smile] Thousands.

a. Wow, I thought it was very rare in infants.

Weinstein: Well, I should say about a thousand. I've been doing

this for a long time. We have 2,000 scoliosis patients; 500 new

patients a year.

b. And how many of them are infants?

Weinstein: Well, 10-15 of the patients this week are infants.

c. What percentage of your patients would you say are infants?

Weinstein: a small percentage.

(9) At what degree of curvature would you begin treatment?

Weinstein: That's really not relevant at this point, as treatment

isn't even useful until at least one year of age. I mean, if she

comes back in six months, and her curve is 40 degrees, we might put her

in a little plastic brace. But she doesn't really have a problem,

and treating a baby of this age won't do anything.

At this point, Andy and I both new that there was no way we were going

to have him as Lilia's doctor, so we gave up trying to get answers.

I had been on the verge of tears out of frustration and anger, and at

this point, I broke down crying and couldn't talk anymore. Andy

took over.

(10) Andy: Have you ever done casting?

Weinstein: [big sly smile] Yes. But I would certainly not cast a baby,

as it has negative effects for growth and leads to deformities of the

chest and rib cage. Look, if you want x-rays today, we'll take

x-rays today.

Andy looked at me, and I nodded. He turned back to Weinstein and said

that we wanted x-rays. They took one x-ray from the front. When we got

back to the exam room, Weinstein said that it looked exactly the same,

but that we shouldn't pay attention to the curve because it is a

very unreliable measure in infants. Then he said that if we weren't

comfortable with him, he would be happy to refer us for a second

opinion. I asked where he would refer us, and he said either

Minneapolis, Chicago, or St. Louis didn't say which hospitals or

doctors). He told us to call his receptionist and she would take care

of a referral.

Well, that's the whole story. Are experiences like this common? I

figured that I'd meet with some resistance, or that the doctor would

be surprised that I had all these questions, but I didn't expect to

be treated like a complete idiot or to basically be told to my face that

I was being an overzealous, overprotective, attention-seeking mother

(even if he was thinking it). I was very cordial, I never told him that

I didn't believe him - the only thing I actually disagreed with

him on outright was that I though six months was too long to wait for a

follow-up. Oh, and the " reliable sources " I'm supposed to

read. a chapter on idiopathic scoliosis from a textbook that

Weinstein edited. It has less than two pages on bracing, one paragraph

on Risser casting, and 29 pages on surgery.

I called the Shriners referral number from their website to see if we

can get Lilia in there. The woman told us that we would have to go to

the hospital closest to us, which would be Twin Cities, MN. I asked if

there was any chance we could get in to Erie, so she connected us with

them. I left a message for someone there and am waiting for a reply. I

really hope Lilia gets in there - I can't imagine taking her

back to Weinstein, and he's the only one in Iowa who treats infants.

Thanks for listening to my long-winded rant! I had to let it all out,

and I'm trying to be constructive with my frustration. I figured at

least something positive might come of venting to you all, since you

might have advice or reassurances for us. I'm only glad that Lilia

seems to be fine right now and that I have you as resources!

Nikki, Andy, and Lilia (June 3, `06)

[Guest guest]

Nikki,

Your experience brought back memories for me. Thanks for sharing that with the

group. Many of us here have experienced this type of response from an ortho

doc, or 2, or 3.....You are definately not alone.

It may be that Lilia's scoliosis is of the resolving type, and you have

absolutely nothing to worry about...But, getting a second opinion from a truly

experienced ortho who is willing to see Lilia in two months, and answers all

questions without making you feel uncomfortable about asking them, is the best

way to be sure that you are covering all bases. Glad you are making your way to

Erie.

HRH

Lilia's first appointment

Well, we didn't get off to the best start with Lilia's doctor.

Actually, it was horrible. I have rarely felt so belittled in my life.

Let me just say the good news is that Lilia's curve has held at 21

degrees for the last two months. J So no complaints there at all.

but the trauma of dealing with Dr. Weinstein really put a damper on what

should have been a happy visit. I was told that I was distrusting, that

I didn't understand what I was talking about, and that if he ordered

an x-ray, he would be treating me, not my daughter. See the

blow-by-blow description below.

We met Dr. Weinstein at Iowa Children's this morning. One of the

University fellows came in first to take a history and check out

Lilia's back. He seemed as though he had never held a baby before

in his life (in fact, I'd bet on it), but we figured that it was

fine because he was not the one who would be making decisions about

Lilia. Then Weinstein came in. very friendly, baby-talking with

Lilia, big smiles. He (1) told us that we had nothing to worry about

and that there really wasn't a problem at all, (2) lifted up the

back of Lilia's shirt while Andy held her, he visually looked at her

back, but didn't touch it, and (3) told us that we shouldn't

concern ourselves and we should come back in six months. THAT WAS IT!!!

He didn't even tell us what the degree of curvature was! I said

that I had several questions I wanted to ask him, and he said, with a

big smile, " Of course! Please ask. " Here are the questions I

asked and the responses I got (verbatim to the best of my memory -

the key phrases that will make you gasp are definitely

word-for-word. I'm not likely to forget the experience of being

treated this way anytime soon).

(1) Should Lilia have an MRI? I've read that it is the only way

to rule out congenital scoliosis.

Weinstein: You don't understand the difference between congenital

and idiopathic scoliosis. You're confusing them. I can't see

any deformities in the vertebra. It is not congenital. [Then he launched

into this analogy about cutting a roll of cookie dough - it was

ridiculous].

(2) Should Lilia's x-rays be repeated? They are now two months

old, and in six months they will be eight months old.

Weinstein: No, it is unnecessary to expose her to radiation. It is very

harmful to babies. A new study has revealed that radiation exposure in

babies causes breast cancer.

a. Even six months seems like a long time. Can't it progress

quite a bit in babies in that amount of time?

Weinstein: NO. One degree a month would be considered very fast

progression.

(3) What is the COBB angle?

Weinstein: At her age, the COBB angle is meaningless. She could have

just been lying funny on the x-ray table. If Dad picks her up right

now, her curve would straighten. It is totally unreliable to measure

the COBB angle.

a. I'd like to know anyway.

Weinstein: It is very mild, nothing to worry about.

b. I'd like the measurement.

Sure. [At this point, the fellow goes over to the computer and measures

the angle - it is 21 degrees]

(4) Where is the curve located?

Weinstein: It is thoracolumbar.

a. Which vertebra are involved?

Weinstein: between T11 and L1 is the apex.

At this point, he says, " Look, I can see that you're very

distrusting and doubting. Let me reassure you that I have treated

thousands of patients, and you have nothing to worry about. I could

order an MRI or x-rays if you want, but I'D BE TREATING YOU, NOT

YOUR DAUGHTER. If you brought the articles you've read, I'd be

happy to go over them with you. " I responded that I didn't have

them with me. He said, " Things on the internet are not filtered.

You can find a study to support any horrible thing you want to hear. If

you'd like, I can direct you to some reliable sources on the topic.

Don't believe everything you read on the internet. There's a

study to support everything, and you can drive yourself crazy. "

(5) What is the RVAD?

Weinstein: [Laughs] - it's virtually zero.

a. So, you have measured it?

Weinstein: [smirks] Yes, they are parallel.

(6) Is there any rotation?

Weinstein: [LAUGHS AGAIN] - there is very little rotation.

a. Do you have a measurement?

Weinstein: It isn't anything to worry about.

(7) What is the shape of her curve?

Weinstein: It is too mild to have a shape.

a. Well, is there one curve in one direction, or does it curve back

like an " S? "

Weinstein: It is very mild, you shouldn't worry too much about it.

(8) How many infants have you treated?

Weinstein: [Huge smirky smile] Thousands.

a. Wow, I thought it was very rare in infants.

Weinstein: Well, I should say about a thousand. I've been doing

this for a long time. We have 2,000 scoliosis patients; 500 new

patients a year.

b. And how many of them are infants?

Weinstein: Well, 10-15 of the patients this week are infants.

c. What percentage of your patients would you say are infants?

Weinstein: a small percentage.

(9) At what degree of curvature would you begin treatment?

Weinstein: That's really not relevant at this point, as treatment

isn't even useful until at least one year of age. I mean, if she

comes back in six months, and her curve is 40 degrees, we might put her

in a little plastic brace. But she doesn't really have a problem,

and treating a baby of this age won't do anything.

At this point, Andy and I both new that there was no way we were going

to have him as Lilia's doctor, so we gave up trying to get answers.

I had been on the verge of tears out of frustration and anger, and at

this point, I broke down crying and couldn't talk anymore. Andy

took over.

(10) Andy: Have you ever done casting?

Weinstein: [big sly smile] Yes. But I would certainly not cast a baby,

as it has negative effects for growth and leads to deformities of the

chest and rib cage. Look, if you want x-rays today, we'll take

x-rays today.

Andy looked at me, and I nodded. He turned back to Weinstein and said

that we wanted x-rays. They took one x-ray from the front. When we got

back to the exam room, Weinstein said that it looked exactly the same,

but that we shouldn't pay attention to the curve because it is a

very unreliable measure in infants. Then he said that if we weren't

comfortable with him, he would be happy to refer us for a second

opinion. I asked where he would refer us, and he said either

Minneapolis, Chicago, or St. Louis didn't say which hospitals or

doctors). He told us to call his receptionist and she would take care

of a referral.

Well, that's the whole story. Are experiences like this common? I

figured that I'd meet with some resistance, or that the doctor would

be surprised that I had all these questions, but I didn't expect to

be treated like a complete idiot or to basically be told to my face that

I was being an overzealous, overprotective, attention-seeking mother

(even if he was thinking it). I was very cordial, I never told him that

I didn't believe him - the only thing I actually disagreed with

him on outright was that I though six months was too long to wait for a

follow-up. Oh, and the " reliable sources " I'm supposed to

read. a chapter on idiopathic scoliosis from a textbook that

Weinstein edited. It has less than two pages on bracing, one paragraph

on Risser casting, and 29 pages on surgery.

I called the Shriners referral number from their website to see if we

can get Lilia in there. The woman told us that we would have to go to

the hospital closest to us, which would be Twin Cities, MN. I asked if

there was any chance we could get in to Erie, so she connected us with

them. I left a message for someone there and am waiting for a reply. I

really hope Lilia gets in there - I can't imagine taking her

back to Weinstein, and he's the only one in Iowa who treats infants.

Thanks for listening to my long-winded rant! I had to let it all out,

and I'm trying to be constructive with my frustration. I figured at

least something positive might come of venting to you all, since you

might have advice or reassurances for us. I'm only glad that Lilia

seems to be fine right now and that I have you as resources!

Nikki, Andy, and Lilia (June 3, `06)

[Guest guest]

Wondering if this guy's name first name is Dave...if so, I saw him on Discovery

Health.

Claflin <noellesmommy@...> wrote: Run as fast as you

can from this guy!

Your treatment by Weinstein is appalling, but, unfortunately, not at all

unusual. I have a friend who is a doctor and she told me when we started this

journey that orthopedists are notorious for having God-complexes and she is

right! I will tell you they are not at all like that at Shriners.

The Shriners in MN does not do the casting...you will definitely want to go to

Erie.

I think it is crazy that he wouldn't treat her until she is a year old. By then

she could be at 100 degrees and beyond the point where casting would help. Ian

stayed at 27 degrees for a long time and then- BOOM- his curves started

progressing very rapidly. So, you have every right to question him on waiting 6

months for a follow up x-ray.

I also disagree about the MRI. An x-ray can't tell you if the spinal cord is

tethered. If left untreated, a tethered spinal cord can lead to prermanent

damage. IMO, that is just BASIC stuff that he should know.

Additionally, Mehta's article is not an " internet " article. Her study is

published in a well known medical journal (The Bone & Joint journal or something

like that - the exact name escapes me for the moment.)

I have to run out the door right now, but will write more when I have some more

time.

Noelle (12-2-01)

Ian (8-15-04)

Lilia's first appointment

Well, we didn't get off to the best start with Lilia's doctor.

Actually, it was horrible. I have rarely felt so belittled in my life.

Let me just say the good news is that Lilia's curve has held at 21

degrees for the last two months. J So no complaints there at all.

but the trauma of dealing with Dr. Weinstein really put a damper on what

should have been a happy visit. I was told that I was distrusting, that

I didn't understand what I was talking about, and that if he ordered

an x-ray, he would be treating me, not my daughter. See the

blow-by-blow description below.

We met Dr. Weinstein at Iowa Children's this morning. One of the

University fellows came in first to take a history and check out

Lilia's back. He seemed as though he had never held a baby before

in his life (in fact, I'd bet on it), but we figured that it was

fine because he was not the one who would be making decisions about

Lilia. Then Weinstein came in. very friendly, baby-talking with

Lilia, big smiles. He (1) told us that we had nothing to worry about

and that there really wasn't a problem at all, (2) lifted up the

back of Lilia's shirt while Andy held her, he visually looked at her

back, but didn't touch it, and (3) told us that we shouldn't

concern ourselves and we should come back in six months. THAT WAS IT!!!

He didn't even tell us what the degree of curvature was! I said

that I had several questions I wanted to ask him, and he said, with a

big smile, " Of course! Please ask. " Here are the questions I

asked and the responses I got (verbatim to the best of my memory -

the key phrases that will make you gasp are definitely

word-for-word. I'm not likely to forget the experience of being

treated this way anytime soon).

(1) Should Lilia have an MRI? I've read that it is the only way

to rule out congenital scoliosis.

Weinstein: You don't understand the difference between congenital

and idiopathic scoliosis. You're confusing them. I can't see

any deformities in the vertebra. It is not congenital. [Then he launched

into this analogy about cutting a roll of cookie dough - it was

ridiculous].

(2) Should Lilia's x-rays be repeated? They are now two months

old, and in six months they will be eight months old.

Weinstein: No, it is unnecessary to expose her to radiation. It is very

harmful to babies. A new study has revealed that radiation exposure in

babies causes breast cancer.

a. Even six months seems like a long time. Can't it progress

quite a bit in babies in that amount of time?

Weinstein: NO. One degree a month would be considered very fast

progression.

(3) What is the COBB angle?

Weinstein: At her age, the COBB angle is meaningless. She could have

just been lying funny on the x-ray table. If Dad picks her up right

now, her curve would straighten. It is totally unreliable to measure

the COBB angle.

a. I'd like to know anyway.

Weinstein: It is very mild, nothing to worry about.

b. I'd like the measurement.

Sure. [At this point, the fellow goes over to the computer and measures

the angle - it is 21 degrees]

(4) Where is the curve located?

Weinstein: It is thoracolumbar.

a. Which vertebra are involved?

Weinstein: between T11 and L1 is the apex.

At this point, he says, " Look, I can see that you're very

distrusting and doubting. Let me reassure you that I have treated

thousands of patients, and you have nothing to worry about. I could

order an MRI or x-rays if you want, but I'D BE TREATING YOU, NOT

YOUR DAUGHTER. If you brought the articles you've read, I'd be

happy to go over them with you. " I responded that I didn't have

them with me. He said, " Things on the internet are not filtered.

You can find a study to support any horrible thing you want to hear. If

you'd like, I can direct you to some reliable sources on the topic.

Don't believe everything you read on the internet. There's a

study to support everything, and you can drive yourself crazy. "

(5) What is the RVAD?

Weinstein: [Laughs] - it's virtually zero.

a. So, you have measured it?

Weinstein: [smirks] Yes, they are parallel.

(6) Is there any rotation?

Weinstein: [LAUGHS AGAIN] - there is very little rotation.

a. Do you have a measurement?

Weinstein: It isn't anything to worry about.

(7) What is the shape of her curve?

Weinstein: It is too mild to have a shape.

a. Well, is there one curve in one direction, or does it curve back

like an " S? "

Weinstein: It is very mild, you shouldn't worry too much about it.

(8) How many infants have you treated?

Weinstein: [Huge smirky smile] Thousands.

a. Wow, I thought it was very rare in infants.

Weinstein: Well, I should say about a thousand. I've been doing

this for a long time. We have 2,000 scoliosis patients; 500 new

patients a year.

b. And how many of them are infants?

Weinstein: Well, 10-15 of the patients this week are infants.

c. What percentage of your patients would you say are infants?

Weinstein: a small percentage.

(9) At what degree of curvature would you begin treatment?

Weinstein: That's really not relevant at this point, as treatment

isn't even useful until at least one year of age. I mean, if she

comes back in six months, and her curve is 40 degrees, we might put her

in a little plastic brace. But she doesn't really have a problem,

and treating a baby of this age won't do anything.

At this point, Andy and I both new that there was no way we were going

to have him as Lilia's doctor, so we gave up trying to get answers.

I had been on the verge of tears out of frustration and anger, and at

this point, I broke down crying and couldn't talk anymore. Andy

took over.

(10) Andy: Have you ever done casting?

Weinstein: [big sly smile] Yes. But I would certainly not cast a baby,

as it has negative effects for growth and leads to deformities of the

chest and rib cage. Look, if you want x-rays today, we'll take

x-rays today.

Andy looked at me, and I nodded. He turned back to Weinstein and said

that we wanted x-rays. They took one x-ray from the front. When we got

back to the exam room, Weinstein said that it looked exactly the same,

but that we shouldn't pay attention to the curve because it is a

very unreliable measure in infants. Then he said that if we weren't

comfortable with him, he would be happy to refer us for a second

opinion. I asked where he would refer us, and he said either

Minneapolis, Chicago, or St. Louis didn't say which hospitals or

doctors). He told us to call his receptionist and she would take care

of a referral.

Well, that's the whole story. Are experiences like this common? I

figured that I'd meet with some resistance, or that the doctor would

be surprised that I had all these questions, but I didn't expect to

be treated like a complete idiot or to basically be told to my face that

I was being an overzealous, overprotective, attention-seeking mother

(even if he was thinking it). I was very cordial, I never told him that

I didn't believe him - the only thing I actually disagreed with

him on outright was that I though six months was too long to wait for a

follow-up. Oh, and the " reliable sources " I'm supposed to

read. a chapter on idiopathic scoliosis from a textbook that

Weinstein edited. It has less than two pages on bracing, one paragraph

on Risser casting, and 29 pages on surgery.

I called the Shriners referral number from their website to see if we

can get Lilia in there. The woman told us that we would have to go to

the hospital closest to us, which would be Twin Cities, MN. I asked if

there was any chance we could get in to Erie, so she connected us with

them. I left a message for someone there and am waiting for a reply. I

really hope Lilia gets in there - I can't imagine taking her

back to Weinstein, and he's the only one in Iowa who treats infants.

Thanks for listening to my long-winded rant! I had to let it all out,

and I'm trying to be constructive with my frustration. I figured at

least something positive might come of venting to you all, since you

might have advice or reassurances for us. I'm only glad that Lilia

seems to be fine right now and that I have you as resources!

Nikki, Andy, and Lilia (June 3, `06)