Re: Terrible experience at plastic surgeon

July 11, 2006

OMG. I can't beleive this happened to you. We also had a very

terrible experience with our plastic surgeon and a neurosurgeon and

a second opinions ped. We began to feel like we were the crazy

ones. Turns out that it was them. You did not deserve this at all

and you are a great mom for knowing your stuff. This Dr. is way out

of line. Unfortunately you and I are not alone. What you have

experienced is an attitude that many doctors have but usually they

aren't so blatently obvious about it. There are many red flags

there especially with the Dr not knowing what brand of helmet they

use. She seems to know alot about cranial tech and not alot about

what she is reccomending. Cranial tech is the only ones who could

produce results for us. The 2 experiences are like night and day.

And there are many others that have had Cranial tech save them after

getting a bad fit. If it wasn't for them we would have had no where

else to go. Cranial tech can back their helmet with studies proving

that it works. Maybe that palstic surgeon could provide studies

showing what scope provides works. As for the casting it really

isn't that bad. In my opinion it is the most accurate way of doing

it. One of the neurosurgeons told us that the scans are totally

inaccurate. I am not saying that he is right but it just goes to

show how different Dr.'s opinions are. We had 2 terribly fitting

starbands. They were covered by our insurance. We have now paid

for many flights and my son had to have 2 doc bands. He is not

finished with his second one but he still has a noticible

deformity. Trust me if I could go back I would be more than happy

to pay for the doc band and the flights at the age of 4.5 months.

Now he had to have 2 doc bands and may still have plagio after all

this because of a number of uninformed, jerk doctors. You are doing

the right things and you are a great parent. Caitlin is lucky to

have you.

Haylee

mom to Andre 22 months tort/doc band #1 22/11/05 doc band #2 21/6/06

& Lesly 22 months

>

> Hi all,

>

> I met with the plastic surgeon today aout my daughters

> plagiocephaly, brachycephaly and torticollis. All three conditions

> were confirmed and she wrote a referral for Scope (using the

> STARband).

>

> The experience was terrible though...The plastic surgeon gave me

one

> look, let me say two sentences ( I asked abouth the CT scan) and

> then immediatley accused me of being a " know it all " because I did

> some research online prior to the appointment. Then she continued

by

> saying to let her be the dr and ask the questions and for me to be

> quiet. When I did ask her another question she got mad and

> asked: " Are you a pediatrician " ? This is the point were I lost my

> cool and actually got upset. I told her I was not a pediatrician,

> that I was just worried about my daughter and that I simply wanted

> to get the best treatment for her. I told her I did not like the

way

> this was going. She just had no compasion at all. This was all

> before I even told her I already had gotten a consult at Cranial

> Technologies.

>

> Really, I so tried to not come off as knowing it all from the

> beginning. I just had a lot of questions. I hadn't even really

said

> anything yet. She had asked if my daughter was developmentally

> behind. And I answered that I did not know but I thought perhaps a

> little. She asked if that's what my pediatrician said. I said no

but

> she is not rolling over yet or sitting up good. That's when she

got

> mad and told me to just answer her questions. How am I supposed to

> know she wants me to tell her what my pediatrician said? I thought

> she was asking my opinion. She had the pediatricians notes right

in

> front of her!

>

> The whole thing just started off so wrong. I was too upset to even

> get my sheet of paper out with my questions. She drew me pictures

of

> my daughter's condition. This is the part I did know about but I

> just sat there politely and listened. She went on and said

> plagiocephaly was just all cosmetic. I quietly told her there are

> research studies out there saying it could leak to jaw problems,

> migraines etc. and she reluctantly agreed. In my book that means

you

> are not giving me the whole story. She referred me to a company

> called Scope which Kaiser has a contract with. I asked her what

> brand helmet they made. She actually did not know right off the

bat!

> It turns out to be STarband. As a referring plastic surgeon who

> deals with patients with plagio on a regular basis would you not

> know this?!

>

> She also bad mouth Cranial Technologies and said SCope was just

such

> a wonderful company because the used the scan and not the old

> fashioned casting method. She said the casting was very upsetting

> for both baby and mom and not necessary. She said Cranial

> Technologies just does a lot of advertising and are not

necessarily

> the best. She claimed Cranial Technologies charges $6,000. I did

not

> correct her but I was quoted $3,000. And she accused CT of

promising

> results to parents that they could not make happen.

>

> In the end she said she was getting me some info and actually had

a

> nurse bring it in. She did not even have the courtesy to say

> goodbye.

>

> Now we are faced with the decision to go with Starband which will

be

> covered by Kaiser or go with Cranial Technologies. Any advise

> anyone? I think I know what to do but I would like to hear some

> opions please! Has anyone else had a similar bad experience?

Please

> tell me it's not me...

>

> Sorry this posting is so long and thanks for letting me vent!

>

> Caitlin 4.5 months, plagio, brachy and torticollis

>

July 11, 2006

I am so sorry about your terrible experience. We had a bad experience with a

pediatric

neurosurgeon, as well as several orthotists along the way. Go with your gut.

You are your

child's best advocate. They should never belittle a concerned parent,

especially for doing

research and asking questions.

I realize that some people do not have a choice of providers but my daughter

wore both a

Starband and a DOC Band, and we were much happier with Cranial Technologies and

the

DOC Band. Their orthos are well-trained and do cranio only. CT is the expert

in treating

plagiocephaly. This has been our experience.

Good luck in your decision.

in ATL

>

> Hi all,

>

> I met with the plastic surgeon today aout my daughters

> plagiocephaly, brachycephaly and torticollis. All three conditions

> were confirmed and she wrote a referral for Scope (using the

> STARband).

>

> The experience was terrible though...The plastic surgeon gave me one

> look, let me say two sentences ( I asked abouth the CT scan) and

> then immediatley accused me of being a " know it all " because I did

> some research online prior to the appointment. Then she continued by

> saying to let her be the dr and ask the questions and for me to be

> quiet. When I did ask her another question she got mad and

> asked: " Are you a pediatrician " ? This is the point were I lost my

> cool and actually got upset. I told her I was not a pediatrician,

> that I was just worried about my daughter and that I simply wanted

> to get the best treatment for her. I told her I did not like the way

> this was going. She just had no compasion at all. This was all

> before I even told her I already had gotten a consult at Cranial

> Technologies.

>

> Really, I so tried to not come off as knowing it all from the

> beginning. I just had a lot of questions. I hadn't even really said

> anything yet. She had asked if my daughter was developmentally

> behind. And I answered that I did not know but I thought perhaps a

> little. She asked if that's what my pediatrician said. I said no but

> she is not rolling over yet or sitting up good. That's when she got

> mad and told me to just answer her questions. How am I supposed to

> know she wants me to tell her what my pediatrician said? I thought

> she was asking my opinion. She had the pediatricians notes right in

> front of her!

>

> The whole thing just started off so wrong. I was too upset to even

> get my sheet of paper out with my questions. She drew me pictures of

> my daughter's condition. This is the part I did know about but I

> just sat there politely and listened. She went on and said

> plagiocephaly was just all cosmetic. I quietly told her there are

> research studies out there saying it could leak to jaw problems,

> migraines etc. and she reluctantly agreed. In my book that means you

> are not giving me the whole story. She referred me to a company

> called Scope which Kaiser has a contract with. I asked her what

> brand helmet they made. She actually did not know right off the bat!

> It turns out to be STarband. As a referring plastic surgeon who

> deals with patients with plagio on a regular basis would you not

> know this?!

>

> She also bad mouth Cranial Technologies and said SCope was just such

> a wonderful company because the used the scan and not the old

> fashioned casting method. She said the casting was very upsetting

> for both baby and mom and not necessary. She said Cranial

> Technologies just does a lot of advertising and are not necessarily

> the best. She claimed Cranial Technologies charges $6,000. I did not

> correct her but I was quoted $3,000. And she accused CT of promising

> results to parents that they could not make happen.

>

> In the end she said she was getting me some info and actually had a

> nurse bring it in. She did not even have the courtesy to say

> goodbye.

>

> Now we are faced with the decision to go with Starband which will be

> covered by Kaiser or go with Cranial Technologies. Any advise

> anyone? I think I know what to do but I would like to hear some

> opions please! Has anyone else had a similar bad experience? Please

> tell me it's not me...

>

> Sorry this posting is so long and thanks for letting me vent!

>

> Caitlin 4.5 months, plagio, brachy and torticollis

>

July 11, 2006

In a message dated 7/11/06 5:13:06 PM, emilybehrmann@... writes:

I saw a regular plastic surgeon. However, she did say she saw patients with plagio on a regular basis.

Thanks for your encouragement!

When I talked to the DME at Kaiser up here in LA - They were very willing to change where I got my helmet - I didn't try and get them to switch to DOC though. You might start with that and then if they say no then try and get them to pay the same as they would for Star. Also, see if there is a Cranio-facial Team that can see your dd. They see mostly babies w/ facial and head problems. Maybe they would be more compassionate toward you and your dd.

HTH!!!

Jen

Mommy to 4...and 1 more!!!!

VOTE FOR LULI- www.evenflo.com

Baby Youre a Star

PHOTO #4842

"Luli"

www.babiesonline.com/babies/j/jens5th/

July 11, 2006

Haylee,

Thank you so much for responding and letting me know I am not crazy. I just spoke with my husband and he is very mad about the way we got treated. How horrible you had to go through this experience as well with your plastic and neurosurgeon. And then the two ill fitted Starbands.... It is ridiculous we get treated this poorly. I wonder how many more have had similar experiences. We pay $546 in health insurance dues each month because we have no benefits through our jobs and then we get treated like this...

Thanks for confirming the red flags here. She actually gave us a pamphlet stating Scope uses Starband but I guess she just gives it out and does not actually read it herself. Also, when I asked her about my daughter's facial asymmetry she said that it was not that noticeable and that I should stop concentrating on it otherwise my daughter would grow up concentrating on it which would be bad for her self esteem. Can you believe that?! I think my daughter is beautiful and I would never want to make her feel self conscious about anything. But she is my baby and I can see her left eye is smaller than her right and I just want to know if this is serious. And if so, if we can do something about it.

Anyways, I would feel really uncomfortable going forward with the procedure covered by Kaiser. So my husband and I decided that this experience just made our decision easier. We are going with Cranial Technologies. I am actually going to call them in a little bit and schedule the casting appointment.

I think you are right about the casting vs the scan. The casting is an exact mold of the skull on which they base the DOC band. With the scan you are never sure if they get the correct measurements. What if the baby moves?

Thank you so much for listening and for saying such nice, comforting words. You are a very kind person and your son is very lucky to have you as a mom as well. I hope andre continues to improve with his DOC band.

Take care,

Caitlin, 4 months, plagio, brachy, tort (moderate/severe)

San Diego

On 7/11/06, haylee204 <rascle204@...> wrote:

OMG. I can't beleive this happened to you. We also had a very terrible experience with our plastic surgeon and a neurosurgeon and a second opinions ped. We began to feel like we were the crazy ones. Turns out that it was them. You did not deserve this at all and you are a great mom for knowing your stuff. This Dr. is way out of line. Unfortunately you and I are not alone. What you have experienced is an attitude that many doctors have but usually they aren't so blatently obvious about it. There are many red flags there especially with the Dr not knowing what brand of helmet they use. She seems to know alot about cranial tech and not alot about what she is reccomending. Cranial tech is the only ones who could produce results for us. The 2 experiences are like night and day. And there are many others that have had Cranial tech save them after getting a bad fit. If it wasn't for them we would have had no where else to go. Cranial tech can back their helmet with studies proving

that it works. Maybe that palstic surgeon could provide studies showing what scope provides works. As for the casting it really isn't that bad. In my opinion it is the most accurate way of doing it. One of the neurosurgeons told us that the scans are totally inaccurate. I am not saying that he is right but it just goes to show how different Dr.'s opinions are. We had 2 terribly fitting starbands. They were covered by our insurance. We have now paid for many flights and my son had to have 2 doc bands. He is not finished with his second one but he still has a noticible deformity. Trust me if I could go back I would be more than happy to pay for the doc band and the flights at the age of 4.5 months. Now he had to have 2 doc bands and may still have plagio after all this because of a number of uninformed, jerk doctors. You are doing the right things and you are a great parent. Caitlin is lucky to have you.Hayleemom to Andre 22 months tort/doc band #1 22/11/05 doc band #2 21/6/06 & Lesly 22 months>> Hi all,> > I met with the plastic surgeon today aout my daughters > plagiocephaly, brachycephaly and torticollis. All three conditions > were confirmed and she wrote a referral for Scope (using the > STARband). > > The experience was terrible though...The plastic surgeon gave me one > look, let me say two sentences ( I asked abouth the CT scan) and > then immediatley accused me of being a " know it all " because I did > some research online prior to the appointment. Then she continued by > saying to let her be the dr and ask the questions and for me to be > quiet. When I did ask her another question she got mad and > asked: " Are you a pediatrician " ? This is the point were I lost my > cool and actually got upset. I told her I was not a pediatrician, > that I was just worried about my daughter and that I simply wanted > to get the best treatment for her. I told her I did not like the way > this was going. She just had no compasion at all. This was all > before I even told her I already had gotten a consult at Cranial > Technologies.> > Really, I so tried to not come off as knowing it all from the > beginning. I just had a lot of questions. I hadn't even really said > anything yet. She had asked if my daughter was developmentally > behind. And I answered that I did not know but I thought perhaps a > little. She asked if that's what my pediatrician said. I said no but > she is not rolling over yet or sitting up good. That's when she got > mad and told me to just answer her questions. How am I supposed to > know she wants me to tell her what my pediatrician said? I thought > she was asking my opinion. She had the pediatricians notes right in > front of her! > > The whole thing just started off so wrong. I was too upset to even > get my sheet of paper out with my questions. She drew me pictures of > my daughter's condition. This is the part I did know about but I > just sat there politely and listened. She went on and said > plagiocephaly was just all cosmetic. I quietly told her there are > research studies out there saying it could leak to jaw problems, > migraines etc. and she reluctantly agreed. In my book that means you > are not giving me the whole story. She referred me to a company > called Scope which Kaiser has a contract with. I asked her what > brand helmet they made. She actually did not know right off the bat! > It turns out to be STarband. As a referring plastic surgeon who > deals with patients with plagio on a regular basis would you not > know this?!> > She also bad mouth Cranial Technologies and said SCope was just such > a wonderful company because the used the scan and not the old > fashioned casting method. She said the casting was very upsetting > for both baby and mom and not necessary. She said Cranial > Technologies just does a lot of advertising and are not necessarily > the best. She claimed Cranial Technologies charges $6,000. I did not > correct her but I was quoted $3,000. And she accused CT of promising > results to parents that they could not make happen. > > In the end she said she was getting me some info and actually had a > nurse bring it in. She did not even have the courtesy to say > goodbye. > > Now we are faced with the decision to go with Starband which will be > covered by Kaiser or go with Cranial Technologies. Any advise > anyone? I think I know what to do but I would like to hear some > opions please! Has anyone else had a similar bad experience? Please > tell me it's not me...> > Sorry this posting is so long and thanks for letting me vent!> > > Caitlin 4.5 months, plagio, brachy and torticollis>

July 11, 2006

Thanks for the advice, . I am sorry you had a bad experience

as well. I just called Cranial Technologies and made an appointment.

We are going with our gut backed up by other people's experiences

and our online research.

How old is your daughter and how long was she treated for?

Caitlin, 4 months (plagio, brachy, tort, going with DOC)

San Diego

> >

> > Hi all,

> >

> > I met with the plastic surgeon today aout my daughters

> > plagiocephaly, brachycephaly and torticollis. All three

conditions

> > were confirmed and she wrote a referral for Scope (using the

> > STARband).

> >

> > The experience was terrible though...The plastic surgeon gave me

one

> > look, let me say two sentences ( I asked abouth the CT scan) and

> > then immediatley accused me of being a " know it all " because I

did

> > some research online prior to the appointment. Then she

continued by

> > saying to let her be the dr and ask the questions and for me to

be

> > quiet. When I did ask her another question she got mad and

> > asked: " Are you a pediatrician " ? This is the point were I lost

my

> > cool and actually got upset. I told her I was not a

pediatrician,

> > that I was just worried about my daughter and that I simply

wanted

> > to get the best treatment for her. I told her I did not like the

way

> > this was going. She just had no compasion at all. This was all

> > before I even told her I already had gotten a consult at Cranial

> > Technologies.

> >

> > Really, I so tried to not come off as knowing it all from the

> > beginning. I just had a lot of questions. I hadn't even really

said

> > anything yet. She had asked if my daughter was developmentally

> > behind. And I answered that I did not know but I thought perhaps

a

> > little. She asked if that's what my pediatrician said. I said no

but

> > she is not rolling over yet or sitting up good. That's when she

got

> > mad and told me to just answer her questions. How am I supposed

to

> > know she wants me to tell her what my pediatrician said? I

thought

> > she was asking my opinion. She had the pediatricians notes right

in

> > front of her!

> >

> > The whole thing just started off so wrong. I was too upset to

even

> > get my sheet of paper out with my questions. She drew me

pictures of

> > my daughter's condition. This is the part I did know about but I

> > just sat there politely and listened. She went on and said

> > plagiocephaly was just all cosmetic. I quietly told her there

are

> > research studies out there saying it could leak to jaw problems,

> > migraines etc. and she reluctantly agreed. In my book that means

you

> > are not giving me the whole story. She referred me to a company

> > called Scope which Kaiser has a contract with. I asked her what

> > brand helmet they made. She actually did not know right off the

bat!

> > It turns out to be STarband. As a referring plastic surgeon who

> > deals with patients with plagio on a regular basis would you not

> > know this?!

> >

> > She also bad mouth Cranial Technologies and said SCope was just

such

> > a wonderful company because the used the scan and not the old

> > fashioned casting method. She said the casting was very

upsetting

> > for both baby and mom and not necessary. She said Cranial

> > Technologies just does a lot of advertising and are not

necessarily

> > the best. She claimed Cranial Technologies charges $6,000. I did

not

> > correct her but I was quoted $3,000. And she accused CT of

promising

> > results to parents that they could not make happen.

> >

> > In the end she said she was getting me some info and actually

had a

> > nurse bring it in. She did not even have the courtesy to say

> > goodbye.

> >

> > Now we are faced with the decision to go with Starband which

will be

> > covered by Kaiser or go with Cranial Technologies. Any advise

> > anyone? I think I know what to do but I would like to hear some

> > opions please! Has anyone else had a similar bad experience?

Please

> > tell me it's not me...

> >

> > Sorry this posting is so long and thanks for letting me vent!

> >

> > Caitlin 4.5 months, plagio, brachy and torticollis

> >

>

July 11, 2006

- I am so sorry for your horrible experience - There is just no

excuse for anyone to be treated like that! We also have Kaiser - up

here in LA - and were treated poorly and also given the run around

until I got a good dr. We finally saw Dr. Shinno out of West LA. She

is wonderful!!! I had another dr actually tell me that no one is

perfect and then started to point out my asymmetries!!! :-O

Were you seeing a cranio-facial team? OR just a reg. plastic surgeon?

I had to be VERY persistant w/ them and then I eventually asked for a

2nd opinion outside Kaiser before they would take me seriously. We

finally got approval and my dd recieved her Hanger Helmet at 6mo. old.

Kaiser refers out of network - meaning they don't make the bands. So

we have had a good experience once outside of Kaisers care. :-)

I'm glad you and your dh are able to get her treatment. Do you know if

you have DME coverage? You may want to talk to the DME dept. and see

if you can get the same coverage for the DOC as you would have for

Starband - Meaning - if they would cover 80% of the Starband for a

total of $2500 - maybe they would pay the sam amount- $2500 - to DOC.

Not 80% of DOC - just the same as Star. I'd give it a shot!

Hang in there mommy! You're doing a great job!!!!

July 12, 2006

Dear mommy of 5,

Thanks for your suggestion about contacting the DME dept. I do have DME coverage so it is worth a try. I saw a regular plastic surgeon. However, she did say she saw patients with plagio on a regular basis.

Thanks for your encouragement!

On 7/12/06, mommyof5kiddies <DVJen@...> wrote:

- I am so sorry for your horrible experience - There is just no excuse for anyone to be treated like that! We also have Kaiser - up here in LA - and were treated poorly and also given the run around

until I got a good dr. We finally saw Dr. Shinno out of West LA. She is wonderful!!! I had another dr actually tell me that no one is perfect and then started to point out my asymmetries!!! :-OWere you seeing a cranio-facial team? OR just a reg. plastic surgeon? I had to be VERY persistant w/ them and then I eventually asked for a 2nd opinion outside Kaiser before they would take me seriously. We finally got approval and my dd recieved her Hanger Helmet at 6mo. old.

Kaiser refers out of network - meaning they don't make the bands. So we have had a good experience once outside of Kaisers care. :-)I'm glad you and your dh are able to get her treatment. Do you know if you have DME coverage? You may want to talk to the DME dept. and see if you can get the same coverage for the DOC as you would have for Starband - Meaning - if they would cover 80% of the Starband for a total of $2500 - maybe they would pay the sam amount- $2500 - to DOC. Not 80% of DOC - just the same as Star. I'd give it a shot!

Hang in there mommy! You're doing a great job!!!!

July 12, 2006

Whatever band you decide to go with is fine but I would run far away

from that plastic surgeon and fast as I could. What kind of

professional is she? I would report her!

Carol