Re: ' Neurosurgeon Appt - LONG

[Guest guest]

I am so sorry for that awful neuro experience! He should have been

able to rule out cranio just by looking at . Does have

asymmetrical ears?? If he does then he definitely doesn't have

cranio. THat's what we learned from our neuro today...

Sounds like he is very anti-band. That stinks!!! I am so sorry!

-/Logan 5 months

PA

> Well, we finally saw the neurosurgeon on Tuesday. It almost didn't

> happen as right about the time of our appt, the nurse made an

> announcement to the waiting room that the Dr. had been called to

> emergency surgery and we could reschedule or wait. Hubby and I

> decided to wait since we had already waited four weeks (with one

> reschedule in there) Glad we did, because about 1/2hr later, we

were

> called in. The guy barely looked at , measured his head by

> putting the tape measure around his eyes and told us his plagio was

> very mild and that he has seen hundreds of cases and they have all

> rounded out on their own - even the severe ones. That it would

take

> a long time so the fact that we have seen no resolution over the

past

> 6 months means nothing. He also told us that gravity caused it and

> gravity will put it back. Is this guy a quack or what? Aren't we

> all subject to the same gravitational forces? Now I am wondering

if

> all these road blocks are the signs I have been asking for..... I

> have heard at least two more stories of severe plagio rounding out

on

> its own and all these doctors keep telling me it will, just be

> patient. Then again, this neuro told me that for the helmet to

work

> it would have to apply so much pressure that it would put holes in

> the skin and would be so hot and uncomfortable that the baby would

be

> miserable (which is, of course, completely contrary to everything I

> have learned about helmet therapy). Further, he said that the

couple

> patients he had that went with helmet therapy had these problems

and

> were also upset that after several months they weren't seeing any

> results. He says that with or without the helmet it is going to

take

> a long time to round out. He reiterated what my ped said about the

> studies being the manufacturer's way of making you buy their $3,000

> product. Then he said he wanted to do xrays to rule out suture

> closure so make an appt with the receptionist for two to three

weeks

> from now. If cranial synostosis is a concern, why would he wait

that

> long? would have to be sedated for this and I am not sure I

> want to do it. It doesn't seem as though the dr is really

concerned

> about it. And wouldn't his head be severely misshappen at 10mos if

> the suture were closed? Keep in mind that we first noticed the

> flatness at around 3mos and it hasn't gotten any worse since then.

I

> had at CT fax over her measurments and opinion to this guy

and

> it was quite obvious he never looked at it. I really didn't get to

> ask all the questions I wanted too because was getting fussy

> and biting my shoulder and the dr was standing at the door with his

> hand on the knob almost the whole time.

>

> Well, I am sure I have rambled on long enough.

> Kristi

> (10mos) and (4)

> OH

[Guest guest]

Kristi:

Well, it sounds like you saw another uneducated & close minded

specialist. It doesn't sound like he addressed any of your concerns

or offered any type of suggestions.

A couple of things: he said that his head will round out on it's own,

and the helmet wouldn't round it any faster than time would. That is

completely untrue. The DOCband would most definitely speed up

's head rounding out. It is very possible that 's head

will round out on it's own over time, we all wish we had a crystal

ball to look into to see 2 yrs down the road, but the band would do

it in 4-8 mos or so (just a guestimate!).

Also, the helmet isn't the uncomforatble to our babies. As you know,

it's uncommon for baby's not to tolerate their band. My Abby didn't

mind for a second that her band was on her head, she slept normal,

ate normal & played normally.

After dealing with Cranial Technologies for quite some times as well

as being a member of this group for quite some time now, I don't feel

for one second that Cranial Tech or any other helmet/band mfg is

simply trying to line their pockets by selling their product. Not at

all. They are helping our children and have come up with a wonderful

item to do so. I compare the bands to braces for teeth...braces are

quite expensive as well, but are often necessary.

As for the craniosynostosis xrays, the dr probably ordered those to

be on the safe side. They don't usually sedate babies for Xrays,

they usually do for a CTscan though. Abby had xrays done & was not

sedated.

I hope i've addressed most of your concerns & questions.

The bottom line is, the decision to band or not is ultimately

your's & your family's decision to make. Do what your gut is telling

you to do - it's a difficult decision...we'll support you no matter

what.

Debbie Abby's mom DOCGrad

MI

> Well, we finally saw the neurosurgeon on Tuesday. It almost didn't

> happen as right about the time of our appt, the nurse made an

> announcement to the waiting room that the Dr. had been called to

> emergency surgery and we could reschedule or wait. Hubby and I

> decided to wait since we had already waited four weeks (with one

> reschedule in there) Glad we did, because about 1/2hr later, we

were

> called in. The guy barely looked at , measured his head by

> putting the tape measure around his eyes and told us his plagio was

> very mild and that he has seen hundreds of cases and they have all

> rounded out on their own - even the severe ones. That it would

take

> a long time so the fact that we have seen no resolution over the

past

> 6 months means nothing. He also told us that gravity caused it and

> gravity will put it back. Is this guy a quack or what? Aren't we

> all subject to the same gravitational forces? Now I am wondering

if

> all these road blocks are the signs I have been asking for..... I

> have heard at least two more stories of severe plagio rounding out

on

> its own and all these doctors keep telling me it will, just be

> patient. Then again, this neuro told me that for the helmet to

work

> it would have to apply so much pressure that it would put holes in

> the skin and would be so hot and uncomfortable that the baby would

be

> miserable (which is, of course, completely contrary to everything I

> have learned about helmet therapy). Further, he said that the

couple

> patients he had that went with helmet therapy had these problems

and

> were also upset that after several months they weren't seeing any

> results. He says that with or without the helmet it is going to

take

> a long time to round out. He reiterated what my ped said about the

> studies being the manufacturer's way of making you buy their $3,000

> product. Then he said he wanted to do xrays to rule out suture

> closure so make an appt with the receptionist for two to three

weeks

> from now. If cranial synostosis is a concern, why would he wait

that

> long? would have to be sedated for this and I am not sure I

> want to do it. It doesn't seem as though the dr is really

concerned

> about it. And wouldn't his head be severely misshappen at 10mos if

> the suture were closed? Keep in mind that we first noticed the

> flatness at around 3mos and it hasn't gotten any worse since then.

I

> had at CT fax over her measurments and opinion to this guy

and

> it was quite obvious he never looked at it. I really didn't get to

> ask all the questions I wanted too because was getting fussy

> and biting my shoulder and the dr was standing at the door with his

> hand on the knob almost the whole time.

>

> Well, I am sure I have rambled on long enough.

> Kristi

> (10mos) and (4)

> OH

[Guest guest]

Kristi,

I'm sorry your appt. didn't go so well.

The second ped neuro I took too, told me her head would round

out on it's own and that a helmet wouldn't work for her. He couldn't

give me a written guarantee that it would round out on it's own. For

some kids it does and for some kids it doesn't. I wasn't about to

take that gamble with my daughter! All I kept thinking about was when

she is a teenager! It terrified me that she might ask me why her head

was flat and why her ears were misaligned and why didn't I correct it

while I could. That is a major reason in my deciding to band her.

I have read many, many aritcles and studies on the DOCband and not

all of them have been written by CT. Never once did a read an article

that said so much pressure is used that it makes holes in the skin. I

think if that were the case the DOCband and others like it would be

outlawed!! A baby can get a skin breakdown from being in a band, but

I think that is due to a skin irritation and not from too much

pressure!

As for ruling out cranio, that is so important to do. Cranio can be

dangerous to a child b/c if it goes untreated, it can cause pressure

on the brain. And no, at 10 months if the sutures are closed wouldn't

make his head more mishappen. There are children with cranio who's

heads aren't nearly as mishappen as children with plagio.

Check out this web site:

http://www.cappskids.org/CAPPSCranioKids.htm

It is full of info on cranio. had a CT scan done to rule out

cranio... I asked that she not be sedated and the respected my wishes

and did it with her fully awake!

The average time in an active band is 4.5 months. It is much longer

in a passive helmet. I think if this doc had his hand on the doorknob

and you didn't even get to ask the questions that you had,well then

he didn't give you enough of his time. You deserved to have ALL of

your questions asked and answered He should of treated you with more

respect! He was obviously in a hurry!

Did you take him to CT for a free consult? When I took there

and was told she had moderated plagio and they recommened a band, I

had to do it!! I know they tell some parents that their baby is too

mild. I know CT is in it for the babies and not the money.

YOU have to do what is best for YOUR child! Just remember that it's a

decision YOUR going to have to live with.

Good luck and please keep us posted,

PS Sorry this is so long! )

> Well, we finally saw the neurosurgeon on Tuesday. It almost didn't

> happen as right about the time of our appt, the nurse made an

> announcement to the waiting room that the Dr. had been called to

> emergency surgery and we could reschedule or wait. Hubby and I

> decided to wait since we had already waited four weeks (with one

> reschedule in there) Glad we did, because about 1/2hr later, we

were

> called in. The guy barely looked at , measured his head by

> putting the tape measure around his eyes and told us his plagio was

> very mild and that he has seen hundreds of cases and they have all

> rounded out on their own - even the severe ones. That it would

take

> a long time so the fact that we have seen no resolution over the

past

> 6 months means nothing. He also told us that gravity caused it and

> gravity will put it back. Is this guy a quack or what? Aren't we

> all subject to the same gravitational forces? Now I am wondering

if

> all these road blocks are the signs I have been asking for..... I

> have heard at least two more stories of severe plagio rounding out

on

> its own and all these doctors keep telling me it will, just be

> patient. Then again, this neuro told me that for the helmet to

work

> it would have to apply so much pressure that it would put holes in

> the skin and would be so hot and uncomfortable that the baby would

be

> miserable (which is, of course, completely contrary to everything I

> have learned about helmet therapy). Further, he said that the

couple

> patients he had that went with helmet therapy had these problems

and

> were also upset that after several months they weren't seeing any

> results. He says that with or without the helmet it is going to

take

> a long time to round out. He reiterated what my ped said about the

> studies being the manufacturer's way of making you buy their $3,000

> product. Then he said he wanted to do xrays to rule out suture

> closure so make an appt with the receptionist for two to three

weeks

> from now. If cranial synostosis is a concern, why would he wait

that

> long? would have to be sedated for this and I am not sure I

> want to do it. It doesn't seem as though the dr is really

concerned

> about it. And wouldn't his head be severely misshappen at 10mos if

> the suture were closed? Keep in mind that we first noticed the

> flatness at around 3mos and it hasn't gotten any worse since then.

I

> had at CT fax over her measurments and opinion to this guy

and

> it was quite obvious he never looked at it. I really didn't get to

> ask all the questions I wanted too because was getting fussy

> and biting my shoulder and the dr was standing at the door with his

> hand on the knob almost the whole time.

>

> Well, I am sure I have rambled on long enough.

> Kristi

> (10mos) and (4)

> OH

[Guest guest]

Kristi: Just wanted to share with you that (1) we have seen

incredible improvement in DS's head shape in the 7 weeks since he was

banded (he's now 6 mos. old), and (2) DS hasn't had ANY problems with

his band whatsoever. I don't think he even knows he's wearing it.

It's so bizarre to me the differing opinions that doctors have. Our

pediatrician took one look at DS at his 4 mo. well-baby appt. and

immediately referred us to CT for a helmet. Yet your specialist seems

to be pooh-poohing the idea. Strange. Good luck to you.

Holly &

> Well, we finally saw the neurosurgeon on Tuesday. It almost didn't

> happen as right about the time of our appt, the nurse made an

> announcement to the waiting room that the Dr. had been called to

> emergency surgery and we could reschedule or wait. Hubby and I

> decided to wait since we had already waited four weeks (with one

> reschedule in there) Glad we did, because about 1/2hr later, we

were

> called in. The guy barely looked at , measured his head by

> putting the tape measure around his eyes and told us his plagio was

> very mild and that he has seen hundreds of cases and they have all

> rounded out on their own - even the severe ones. That it would take

> a long time so the fact that we have seen no resolution over the

past

> 6 months means nothing. He also told us that gravity caused it and

> gravity will put it back. Is this guy a quack or what? Aren't we

> all subject to the same gravitational forces? Now I am wondering if

> all these road blocks are the signs I have been asking for..... I

> have heard at least two more stories of severe plagio rounding out

on

> its own and all these doctors keep telling me it will, just be

> patient. Then again, this neuro told me that for the helmet to work

> it would have to apply so much pressure that it would put holes in

> the skin and would be so hot and uncomfortable that the baby would

be

> miserable (which is, of course, completely contrary to everything I

> have learned about helmet therapy). Further, he said that the

couple

> patients he had that went with helmet therapy had these problems and

> were also upset that after several months they weren't seeing any

> results. He says that with or without the helmet it is going to

take

> a long time to round out. He reiterated what my ped said about the

> studies being the manufacturer's way of making you buy their $3,000

> product. Then he said he wanted to do xrays to rule out suture

> closure so make an appt with the receptionist for two to three weeks

> from now. If cranial synostosis is a concern, why would he wait

that

> long? would have to be sedated for this and I am not sure I

> want to do it. It doesn't seem as though the dr is really concerned

> about it. And wouldn't his head be severely misshappen at 10mos if

> the suture were closed? Keep in mind that we first noticed the

> flatness at around 3mos and it hasn't gotten any worse since then.

I

> had at CT fax over her measurments and opinion to this guy and

> it was quite obvious he never looked at it. I really didn't get to

> ask all the questions I wanted too because was getting fussy

> and biting my shoulder and the dr was standing at the door with his

> hand on the knob almost the whole time.

>

> Well, I am sure I have rambled on long enough.

> Kristi

> (10mos) and (4)

> OH

[Guest guest]

Hi Kristi:

I think the surgeon is not really " interested " in treating plagio, so

it isn't on his radar screen.

What disturbs me is that he basically looked you in the face and told

you untruths just to make you go away. A real jerk.

Whether or not you decide to band is totally your call. I decided to

band because I could not be guaranteed that the plagio would " round

out on it's own " In my case, I don't think it would have, as my

daughter had inter-uterine restraint and was born with her

asymmetries. BUT, we'll never know, and I wanted to error on the

safe side.

The helmet therapy has gone great for us. My daughter's head is

almost round today (we have about 6 weeks left in the helmet), and I

do not regret one minute nor one dollar spent.

There is a new group in called olderplagio where moms, dads,

and even older plagio people can write in and share their

experiences. It might be worth it for you to check out their

stories? At least you can see what any downfalls would be to not

banding.

Good luck to you and your little .

Kind regards,

> Well, we finally saw the neurosurgeon on Tuesday. It almost didn't

> happen as right about the time of our appt, the nurse made an

> announcement to the waiting room that the Dr. had been called to

> emergency surgery and we could reschedule or wait. Hubby and I

> decided to wait since we had already waited four weeks (with one

> reschedule in there) Glad we did, because about 1/2hr later, we

were

> called in. The guy barely looked at , measured his head by

> putting the tape measure around his eyes and told us his plagio was

> very mild and that he has seen hundreds of cases and they have all

> rounded out on their own - even the severe ones. That it would

take

> a long time so the fact that we have seen no resolution over the

past

> 6 months means nothing. He also told us that gravity caused it and

> gravity will put it back. Is this guy a quack or what? Aren't we

> all subject to the same gravitational forces? Now I am wondering

if

> all these road blocks are the signs I have been asking for..... I

> have heard at least two more stories of severe plagio rounding out

on

> its own and all these doctors keep telling me it will, just be

> patient. Then again, this neuro told me that for the helmet to

work

> it would have to apply so much pressure that it would put holes in

> the skin and would be so hot and uncomfortable that the baby would

be

> miserable (which is, of course, completely contrary to everything I

> have learned about helmet therapy). Further, he said that the

couple

> patients he had that went with helmet therapy had these problems

and

> were also upset that after several months they weren't seeing any

> results. He says that with or without the helmet it is going to

take

> a long time to round out. He reiterated what my ped said about the

> studies being the manufacturer's way of making you buy their $3,000

> product. Then he said he wanted to do xrays to rule out suture

> closure so make an appt with the receptionist for two to three

weeks

> from now. If cranial synostosis is a concern, why would he wait

that

> long? would have to be sedated for this and I am not sure I

> want to do it. It doesn't seem as though the dr is really

concerned

> about it. And wouldn't his head be severely misshappen at 10mos if

> the suture were closed? Keep in mind that we first noticed the

> flatness at around 3mos and it hasn't gotten any worse since then.

I

> had at CT fax over her measurments and opinion to this guy

and

> it was quite obvious he never looked at it. I really didn't get to

> ask all the questions I wanted too because was getting fussy

> and biting my shoulder and the dr was standing at the door with his

> hand on the knob almost the whole time.

>

> Well, I am sure I have rambled on long enough.

> Kristi

> (10mos) and (4)

> OH

[Guest guest]

Hi Kristi:

I think the surgeon is not really " interested " in treating plagio, so

it isn't on his radar screen.

What disturbs me is that he basically looked you in the face and told

you untruths just to make you go away. A real jerk.

Whether or not you decide to band is totally your call. I decided to

band because I could not be guaranteed that the plagio would " round

out on it's own " In my case, I don't think it would have, as my

daughter had inter-uterine restraint and was born with her

asymmetries. BUT, we'll never know, and I wanted to error on the

safe side.

The helmet therapy has gone great for us. My daughter's head is

almost round today (we have about 6 weeks left in the helmet), and I

do not regret one minute nor one dollar spent.

There is a new group in called olderplagio where moms, dads,

and even older plagio people can write in and share their

experiences. It might be worth it for you to check out their

stories? At least you can see what any downfalls would be to not

banding.

Good luck to you and your little .

Kind regards,

> Well, we finally saw the neurosurgeon on Tuesday. It almost didn't

> happen as right about the time of our appt, the nurse made an

> announcement to the waiting room that the Dr. had been called to

> emergency surgery and we could reschedule or wait. Hubby and I

> decided to wait since we had already waited four weeks (with one

> reschedule in there) Glad we did, because about 1/2hr later, we

were

> called in. The guy barely looked at , measured his head by

> putting the tape measure around his eyes and told us his plagio was

> very mild and that he has seen hundreds of cases and they have all

> rounded out on their own - even the severe ones. That it would

take

> a long time so the fact that we have seen no resolution over the

past

> 6 months means nothing. He also told us that gravity caused it and

> gravity will put it back. Is this guy a quack or what? Aren't we

> all subject to the same gravitational forces? Now I am wondering

if

> all these road blocks are the signs I have been asking for..... I

> have heard at least two more stories of severe plagio rounding out

on

> its own and all these doctors keep telling me it will, just be

> patient. Then again, this neuro told me that for the helmet to

work

> it would have to apply so much pressure that it would put holes in

> the skin and would be so hot and uncomfortable that the baby would

be

> miserable (which is, of course, completely contrary to everything I

> have learned about helmet therapy). Further, he said that the

couple

> patients he had that went with helmet therapy had these problems

and

> were also upset that after several months they weren't seeing any

> results. He says that with or without the helmet it is going to

take

> a long time to round out. He reiterated what my ped said about the

> studies being the manufacturer's way of making you buy their $3,000

> product. Then he said he wanted to do xrays to rule out suture

> closure so make an appt with the receptionist for two to three

weeks

> from now. If cranial synostosis is a concern, why would he wait

that

> long? would have to be sedated for this and I am not sure I

> want to do it. It doesn't seem as though the dr is really

concerned

> about it. And wouldn't his head be severely misshappen at 10mos if

> the suture were closed? Keep in mind that we first noticed the

> flatness at around 3mos and it hasn't gotten any worse since then.

I

> had at CT fax over her measurments and opinion to this guy

and

> it was quite obvious he never looked at it. I really didn't get to

> ask all the questions I wanted too because was getting fussy

> and biting my shoulder and the dr was standing at the door with his

> hand on the knob almost the whole time.

>

> Well, I am sure I have rambled on long enough.

> Kristi

> (10mos) and (4)

> OH

[Guest guest]

<iammichelle@e...> wrote:

" Does have asymmetrical ears??

Yes, he does and it is quite obvious just by looking at him. I, too,

thought that it could be determined simply by looking. Thanks for

your reply!

Kristi

(10mos) and (4)

OH

[Guest guest]

Kristi,

Sounds like you had a very disappointing appointment today. After

waiting 4 weeks, the neuro should have had at least the decency to

answer all your questions. I sincerely believe that he was using

scare tactics to persuade you from using a band. Half the time I

think these if a neurosurgeon can't take a knife to you, then they

don't want anything to do with you at all. To say that the helmet

would apply enough pressure that it would put holes in the skin was a

gross exaggeration! I assume he is referring to the red spots or

skin breakdown that may happen, but are taken care of with

adjustments. And I'm sure you have read here that the majority of

our kids never even realise that they are wearing their helmets or

bands, sounds to me like they aren't miserable at all. If I were in

your shoes, and please don't take this as me telling you what to do,

but I would seek another opinion. Have you pretty much decided where

you are going to get a band or helmet from if you decide to take that

route? Is there any chance to get in touch with an ortho there and

find out which specialists aren't so anti-band?

As for the x-rays, I agree with Debbie that he is just probably

ordering them to be on the safe side. My neuro was able to see that

the twins didn't have cranio without any extra testing, but not all

cases are so clear. They can't always determine it based on sight

alone. But if he is saying to make the appoointment in a few weeks,

then I think its safe to assume that he has already ruled out cranio,

but he just wants to be sure.

Good luck Kristi. Please keep us posted on how things go from here

on out.

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> Well, we finally saw the neurosurgeon on Tuesday. It almost didn't

> happen as right about the time of our appt, the nurse made an

> announcement to the waiting room that the Dr. had been called to

> emergency surgery and we could reschedule or wait. Hubby and I

> decided to wait since we had already waited four weeks (with one

> reschedule in there) Glad we did, because about 1/2hr later, we

were

> called in. The guy barely looked at , measured his head by

> putting the tape measure around his eyes and told us his plagio was

> very mild and that he has seen hundreds of cases and they have all

> rounded out on their own - even the severe ones. That it would

take

> a long time so the fact that we have seen no resolution over the

past

> 6 months means nothing. He also told us that gravity caused it and

> gravity will put it back. Is this guy a quack or what? Aren't we

> all subject to the same gravitational forces? Now I am wondering

if

> all these road blocks are the signs I have been asking for..... I

> have heard at least two more stories of severe plagio rounding out

on

> its own and all these doctors keep telling me it will, just be

> patient. Then again, this neuro told me that for the helmet to

work

> it would have to apply so much pressure that it would put holes in

> the skin and would be so hot and uncomfortable that the baby would

be

> miserable (which is, of course, completely contrary to everything I

> have learned about helmet therapy). Further, he said that the

couple

> patients he had that went with helmet therapy had these problems

and

> were also upset that after several months they weren't seeing any

> results. He says that with or without the helmet it is going to

take

> a long time to round out. He reiterated what my ped said about the

> studies being the manufacturer's way of making you buy their $3,000

> product. Then he said he wanted to do xrays to rule out suture

> closure so make an appt with the receptionist for two to three

weeks

> from now. If cranial synostosis is a concern, why would he wait

that

> long? would have to be sedated for this and I am not sure I

> want to do it. It doesn't seem as though the dr is really

concerned

> about it. And wouldn't his head be severely misshappen at 10mos if

> the suture were closed? Keep in mind that we first noticed the

> flatness at around 3mos and it hasn't gotten any worse since then.

I

> had at CT fax over her measurments and opinion to this guy

and

> it was quite obvious he never looked at it. I really didn't get to

> ask all the questions I wanted too because was getting fussy

> and biting my shoulder and the dr was standing at the door with his

> hand on the knob almost the whole time.

>

> Well, I am sure I have rambled on long enough.

> Kristi

> (10mos) and (4)

> OH