Re: very confused--neurosurgeon appointment

[Guest guest]

Sorry you are going through this! It is not like you need extra confusion! I can only tell you why I chose what I chose. My daughter, Kennedy was not diagnosed until we "fired" our first pediatritian after repeatedly questioning her head shape and being blown off completely. We have since found out that this pediatritian knows about plagiocephaly and chooses not to treat it. He even told friends of my husband that they were abusive parents for insisting on banding their son who had severe tort and plagio. He was older and did not get good correction. As far as adults affected...my husband's head is completely flat in the back! We are banding Kennedy because I looked at the pros and cons and the regrets I would feel for not banding are far greater than any regrets I might encounter from choosing this course of treatment. Our PT told us Kennedy was mild to moderate just looking at her, but she measured severe. You will make the decision that is right for you. Good

luck!!!

Christy - mother to Kennedy

Plagio, tort, brachy

Tulsa, OK

to be DOC banded in 2 weeksKendra <kjhilty@...> wrote:

Hi,I have posted here a few times about my daugher a (10 months old). She was seen at cranial tech and diagnosed with severe plagio (24mm of asymetry) and moderate tort. They said she would be a candidate for a band. We went to the neurosurgeon for a 2nd opinion and to appease our ped. The neuro said she has mild plagio and is not really a candidate for a helmet. He also said that plagio is purely cosmetic and that there are no long term side effects even though people are saying there are. He also added that he has only seen one adult with plagio. My mom pointed out that most of us who are adults were tummy sleepers. Also, the neuro did no measuring. He just basically looked at her from the front. I should add that he is a well respected neurosurgeon in our area from a well respected hospital. I don't know what to do

now. I know this is a decision that my husband and I have to make eventually, but I would just like some guidance. Have any of you had this happen? Whose diagnosis is most accurate? Thanks for any help,KendraFor more plagio info

[Guest guest]

I too went to a neurosurgeon and he told me that my daughter was fine, just had

a little asymmetry and " would look better than many kids in her class " . That

some of them would " Look like they got hit in the back of the head with a

baseball bat " . Thank goodness we did NOT take his advice and decided to band

our daughter (at 9 1/2 months). She got her 3rd band today (she was 12mm when

we began and we decided to do band 2 and 3 to give her more time for

correction).

My feeling here is that 24mm is not mild but severe. I would urge you to get

your daughter banded. It can only help. If your doctor is not wanting to write

the rx, tell her you will find a new doctor. CT can give you names of

band-friendly doctors. It seems to me that many neurosurgeons are either

against banding or they are so used to seeing very, very extreme cases that they

consider everything else mild.

I think that there are many side effects to plagio. Misaligned jaw, eyes,

teasing from kids, etc. Cranial Tech is great and you should get good results.

If you would like to contact me directly... please feel free.

dmpeters@...

Dawn - (17 months - 3rd DOC Band today)

very confused--neurosurgeon appointment

>

>

> Hi,

> I have posted here a few times about my daugher a (10 months

> old). She was seen at cranial tech and diagnosed with severe

> plagio

> (24mm of asymetry) and moderate tort. They said she would be a

> candidate for a band. We went to the neurosurgeon for a 2nd

> opinion

> and to appease our ped. The neuro said she has mild plagio and is

> not

> really a candidate for a helmet. He also said that plagio is

> purely

> cosmetic and that there are no long term side effects even though

> people are saying there are. He also added that he has only seen

> one

> adult with plagio. My mom pointed out that most of us who are

> adults

> were tummy sleepers.

> Also, the neuro did no measuring. He just basically looked at her

> from the front. I should add that he is a well respected

> neurosurgeon

> in our area from a well respected hospital.

> I don't know what to do now. I know this is a decision that my

> husband and I have to make eventually, but I would just like some

> guidance. Have any of you had this happen? Whose diagnosis is most

> accurate?

> Thanks for any help,

> Kendra

>

>

>

>

>

>

[Guest guest]

Hi there

I feel more than a bit sorry for you, as you must feel really

discouraged by seeing this neurosurgeon. I think most people on this

site are probably a bit shocked by what this neurosurgeon said to

you about it being mild. It simply isn't. I usually tend to sit on

the fence a bit when people write in to ask whether to band, perhaps

becasue the plagio is milder or moderate (under 1.5mm) or their baby

is younger, so they can see what might happen in a month or two.

However, in this instance, I'm going to come off the fence. I really

do think if you are at all contemplating banding to go ahead. Your

daughter's plagio is severe (more than 1.5mm), not mild and is very

unlikely to correct itself at this stage (as it clearly hasn't up

til now, and presumably your baby has been sitting a while). Most

people who are on this site have children with much milder plagio,

yet have been advised to go ahead by their ped.

Is there any way you could get a second opinion from a specialist in

plagio who has some experience of recommending bands, so would be

able to tell you about the usual criterion for banding (other than

CT)? I suspect this neurosurgeon has never recommended a band in his

life, and therefore it doesn't matter how severe the case, he will

not suggest banding. That's quite worrying, as banding is

recommended by the American Academy of Pediatrics for moderate to

severe plagio after 6 months, so your daughter definitely fulfils

this criterion.

As for the cosmetic issue- interestingly enough, I have a slightly

different opinion of this right now. I am not ashamed to admit I put

my daughter in a band primarily for cosmetic reasons, I just didn't

want her to have a misshapen head all her life- she also had

significant ear and face asymmetry (2.3mm, so very similar to your

daughter's). It has now gone thanks to her band and she looks

fantastic (less than 1mm asymmetry). However, she has been left with

a little jaw misalignment which have caused a crossbite. So I now

know it isn't just a cosmetic problem, it has affected her skull

alignment. The band has corrected it 99% which is wonderful, but

inevitably it is problematic for a baby to have their skull

significantly shifted away from the norm.

I'm sorry if you feel we are all queueing up to tell you to band

your baby. We are not normally like this, honest!!!! (check our

posts!) But what the neurosurgeon told you seems so at odds with APA

practice and also our own experiences, that I think we are probably

all rushing in to point this out.

I hope you do find your way through this maze. I was lucky and saw a

very expert specialist who is conducting research into this area (in

the UK, or I'd pass his name on) and knows his stuff. He doesn't

band babies for the sake of it, has really strict criterion, only

ever uses one band and is generally very conservative when it comes

to treatment. He also doesn't charge for his services, so has no

financial motive for banding babies. But I am pretty sure he would

recommend you to go ahead if you think that is what you would like

to do.

Take care, good luck- and let us know how you get on with it all.

Hannah (mum to Lucia, London, UK)

Cranio grad.

> I too went to a neurosurgeon and he told me that my daughter was

fine, just had a little asymmetry and " would look better than many

kids in her class " . That some of them would " Look like they got hit

in the back of the head with a baseball bat " . Thank goodness we did

NOT take his advice and decided to band our daughter (at 9 1/2

months). She got her 3rd band today (she was 12mm when we began and

we decided to do band 2 and 3 to give her more time for correction).

>

> My feeling here is that 24mm is not mild but severe. I would urge

you to get your daughter banded. It can only help. If your doctor

is not wanting to write the rx, tell her you will find a new

doctor. CT can give you names of band-friendly doctors. It seems

to me that many neurosurgeons are either against banding or they are

so used to seeing very, very extreme cases that they consider

everything else mild.

>

> I think that there are many side effects to plagio. Misaligned

jaw, eyes, teasing from kids, etc. Cranial Tech is great and you

should get good results.

>

> If you would like to contact me directly... please feel free.

>

> dmpeters@w...

>

> Dawn - (17 months - 3rd DOC Band today)

>

>

>

>

> very confused--neurosurgeon appointment

>

> >

> >

> > Hi,

> > I have posted here a few times about my daugher a (10 months

> > old). She was seen at cranial tech and diagnosed with severe

> > plagio

> > (24mm of asymetry) and moderate tort. They said she would be a

> > candidate for a band. We went to the neurosurgeon for a 2nd

> > opinion

> > and to appease our ped. The neuro said she has mild plagio and

is

> > not

> > really a candidate for a helmet. He also said that plagio is

> > purely

> > cosmetic and that there are no long term side effects even

though

> > people are saying there are. He also added that he has only seen

> > one

> > adult with plagio. My mom pointed out that most of us who are

> > adults

> > were tummy sleepers.

> > Also, the neuro did no measuring. He just basically looked at

her

> > from the front. I should add that he is a well respected

> > neurosurgeon

> > in our area from a well respected hospital.

> > I don't know what to do now. I know this is a decision that my

> > husband and I have to make eventually, but I would just like

some

> > guidance. Have any of you had this happen? Whose diagnosis is

most

> > accurate?

> > Thanks for any help,

> > Kendra

> >

> >

> >

> >

> >

> >

[Guest guest]

Kendra,

I'm so sorry you're getting mixed signals. To put it bluntly your neuro has no clue!!! He may be well respected but obviously his strong suit isn't plagio. He's probably great with strokes, alzheimer's and MS. 24mm of asymmetry is severe - sorry for my bluntness. I believe your daughter, a would benefit greatly from a band. At 10 months time is of the essence. Her growth is probably starting to slow down. However, don't worry too much Cranial Tech keeps babies in bands up to 24 months if needed. Now the 24 mm measurement could have been off a little 1-2mm but not enough that one would say she had a mild case. My daughter had 11 mm and our ped agreed we should do something about it. She was considered moderate. The more severe the more likelihood of long term effects. There has not been a ton of research into long term effects but cranial facial surgeons and neurologists have noticed

people with asymmetries tend to have issues with the jaw, migraines, ear infections, some auditory and eye sight problems. We have papers in the files and links sections which point to some of these issues. And as your mom stated most adults were tummy sleepers. I know my ears are off - I can tell everytime I get new glasses. I think tummy sleeping helped as far as early repo and stretching weak neck muscles (my own opinion) that and not as many bouncy seats, infant seats, and swing use.

Bottom line - are you happy with her head shape if it were to stay the same? If so just treat the tort (please treat the tort). If not, pursue the band. CT is very professional and knowledgeable. You really shouldn't have any worries with them.

mom to na

DOC Grad

SC Kendra <kjhilty@...> wrote:

Hi,I have posted here a few times about my daugher a (10 months old). She was seen at cranial tech and diagnosed with severe plagio (24mm of asymetry) and moderate tort. They said she would be a candidate for a band. We went to the neurosurgeon for a 2nd opinion and to appease our ped. The neuro said she has mild plagio and is not really a candidate for a helmet. He also said that plagio is purely cosmetic and that there are no long term side effects even though people are saying there are. He also added that he has only seen one adult with plagio. My mom pointed out that most of us who are adults were tummy sleepers. Also, the neuro did no measuring. He just basically looked at her from the front. I should add that he is a well respected neurosurgeon in our area from a well respected hospital. I don't know what to do

now. I know this is a decision that my husband and I have to make eventually, but I would just like some guidance. Have any of you had this happen? Whose diagnosis is most accurate? Thanks for any help,KendraFor more plagio info

[Guest guest]

I think Hannah meant cm not mm. Some of the most widely used scales are...

<6 mm mild 6 - 15 mm moderate 15+ mm severe

<10 mm mild 10 - 15 mm moderate 15+ mm severe

and remember 15 mm = 1.5 cm and 2.54cm = 1 inch

the average person has 1-3 mm of asymmetry

99% of the population has less than 6 mm (I wish I remembered where I read this!)

HTH

hannah_farrimond <hannah_farrimond@...> wrote:

Hi thereI feel more than a bit sorry for you, as you must feel really discouraged by seeing this neurosurgeon. I think most people on this site are probably a bit shocked by what this neurosurgeon said to you about it being mild. It simply isn't. I usually tend to sit on the fence a bit when people write in to ask whether to band, perhaps becasue the plagio is milder or moderate (under 1.5mm) or their baby is younger, so they can see what might happen in a month or two. However, in this instance, I'm going to come off the fence. I really do think if you are at all contemplating banding to go ahead. Your daughter's plagio is severe (more than 1.5mm), not mild and is very unlikely to correct itself at this stage (as it clearly hasn't up til now, and presumably your baby has been sitting a while). Most people who are on this

site have children with much milder plagio, yet have been advised to go ahead by their ped.Is there any way you could get a second opinion from a specialist in plagio who has some experience of recommending bands, so would be able to tell you about the usual criterion for banding (other than CT)? I suspect this neurosurgeon has never recommended a band in his life, and therefore it doesn't matter how severe the case, he will not suggest banding. That's quite worrying, as banding is recommended by the American Academy of Pediatrics for moderate to severe plagio after 6 months, so your daughter definitely fulfils this criterion.As for the cosmetic issue- interestingly enough, I have a slightly different opinion of this right now. I am not ashamed to admit I put my daughter in a band primarily for cosmetic reasons, I just didn't want her to have a misshapen head all her life- she also had significant ear and face

asymmetry (2.3mm, so very similar to your daughter's). It has now gone thanks to her band and she looks fantastic (less than 1mm asymmetry). However, she has been left with a little jaw misalignment which have caused a crossbite. So I now know it isn't just a cosmetic problem, it has affected her skull alignment. The band has corrected it 99% which is wonderful, but inevitably it is problematic for a baby to have their skull significantly shifted away from the norm. I'm sorry if you feel we are all queueing up to tell you to band your baby. We are not normally like this, honest!!!! (check our posts!) But what the neurosurgeon told you seems so at odds with APA practice and also our own experiences, that I think we are probably all rushing in to point this out. I hope you do find your way through this maze. I was lucky and saw a very expert specialist who is conducting research into this area (in the UK, or I'd pass

his name on) and knows his stuff. He doesn't band babies for the sake of it, has really strict criterion, only ever uses one band and is generally very conservative when it comes to treatment. He also doesn't charge for his services, so has no financial motive for banding babies. But I am pretty sure he would recommend you to go ahead if you think that is what you would like to do.Take care, good luck- and let us know how you get on with it all.Hannah (mum to Lucia, London, UK)Cranio grad.> I too went to a neurosurgeon and he told me that my daughter was fine, just had a little asymmetry and "would look better than many kids in her class". That some of them would "Look like they got hit in the back of the head with a baseball bat". Thank goodness we did NOT take his advice and decided to band our daughter (at 9 1/2

months). She got her 3rd band today (she was 12mm when we began and we decided to do band 2 and 3 to give her more time for correction).> > My feeling here is that 24mm is not mild but severe. I would urge you to get your daughter banded. It can only help. If your doctor is not wanting to write the rx, tell her you will find a new doctor. CT can give you names of band-friendly doctors. It seems to me that many neurosurgeons are either against banding or they are so used to seeing very, very extreme cases that they consider everything else mild. > > I think that there are many side effects to plagio. Misaligned jaw, eyes, teasing from kids, etc. Cranial Tech is great and you should get good results.> > If you would like to contact me directly... please feel free.> > dmpeters@w...> > Dawn - (17 months - 3rd DOC Band

today)> > > > > very confused--neurosurgeon appointment> > > > > > > Hi,> > I have posted here a few times about my daugher a (10 months > > old). She was seen at cranial tech and diagnosed with severe > > plagio > > (24mm of asymetry) and moderate tort. They said she would be a > > candidate for a band. We went to the neurosurgeon for a 2nd > > opinion > > and to appease our ped. The neuro said she has mild plagio and is > > not > > really a candidate for a helmet. He also said that plagio is > > purely > > cosmetic and that there are no long term side effects even though > > people are saying there are. He also added that he has only

seen > > one > > adult with plagio. My mom pointed out that most of us who are > > adults > > were tummy sleepers. > > Also, the neuro did no measuring. He just basically looked at her > > from the front. I should add that he is a well respected > > neurosurgeon > > in our area from a well respected hospital. > > I don't know what to do now. I know this is a decision that my > > husband and I have to make eventually, but I would just like some > > guidance. Have any of you had this happen? Whose diagnosis is most > > accurate? > > Thanks for any help,> > Kendra> > > > > > > > > > > >