ears

[Guest guest]

Christy,

My 's ears are misshapen as well. She's 7 months and just starting treatment. The ear on her flat side is a good ½ to 1 inch forward and is a completely different shape than the right one. That's nice and round and soft. Her left is "skinny" and pointed from her lying on that ear when she slept. Looks like an elf or one of those Vulcans from Star Trek. )

Kerri

[Guest guest]

...

Thanks for the message. Your son is absolutely gorgeous. Furthermore,

I stared and stared at his ears and couldn't find a thing different

about them.

Let me make sure I understand you right before I get my hopes all up.

' tort ear was further back on his head AND rotated

backwards? You had said " pointed downwards " so I'm guessing we're

talking about the same thing? Like one ear was standing up straight

and the other was laying down?

I know each child will respond to treatment differently, but if

Abby's ears are similar to how ' were, then I can at least

hope that Abby's have the chance of looking normal. I HATE hearing

people (even her ped) say that if it is an issue, she can cover it

with her hair. UGH!

I think you're on to something with some type of restriction

happening inutero. I wish there was more info out there so we didn't

have to guess.

Thanks again,

Christy

[Guest guest]

In a message dated 6/27/2002 11:47:23 AM Central Daylight Time, christyludwig@... writes:

The craniofacialsurgeon, nice as he was, basically blew it off. Told

me that it was a mild issue compared to the things he deals with.

tell this gooof ball you weren't asking about your child compared to others you were asking because it is your child and just because it isn't asbad as the poor other sick baby doesn't mean it is not important! gggrrr gets my blood boiling!

beck

[Guest guest]

Christy and ~

Grace also has one ear that is mishapen. Her tort ear is further forward and has a dip in it and is slightly bent. The ped said that this was a strong sign that her tort started inutero because you could see from her ear that her head must have been resting on that shoulder for a lonnnnnng time We did get a lot of correction on how far forward it was from her wearing her helmet. We could see the progress from pictures that now when you look at her from behind you really can't tell from the ears which side was the tort side whereas before the helmet it was obvious from behind. But I know that ear will always be slightly off and of course the dip in it will always be there. Our ped told us at her 9 month check that basically that would be a cosmetic issue.

Anyway I was wondering how much correction that received as far as his ear went (as Christy said he is a doll and you can't tell from the picture that there is a difference) And have you ever been concerned about there being any kind of inner ear trouble? Our ped told us that it didn't affect the ear canal etc that it would just be cosmetic but I can't help wondering??? And I know that once you messaged me about how you would massage 's tort side of his face could you describe again what you did and did you feel that it helped the ear or was it more for the asymmetry??? Thanks

and Grace

[Guest guest]

>Now in reference to the " sliding " off the head post...Abby's little

ear is not only in a posterior position to the other, but it is

rotated back. The plagio side ear would be at maybe 12 o'clock on the

dial where the little one is at 2 o'clock. It this typical with

plagio as well? If this ear thing isn't plagio/tort related, I want

to figure out what is going on. <

Christy:

Are you saying then that Abby's plagio side ear is further back or

behind her non plagio side?

Typically in plagio babies, the ear on the plagio side is actually

pushed forward, more in front of the non plagio side's ear.

Debbie Abby's mom DOCgrad

MI

I'm trying to find the post where one of you said your child's ears

> were so misaligned it seemed one of the ears was going to slide

right

> off the head. I can't find it, so I'll ask all of you.

>

> Here's my concern. Abby's ears are way off. I know this is normal

> with plagio, BUT they're not even the same shape. The one on the

tort

> side is significantly smaller and still developing. It has made a

> radical transformation in the last month, so I'm hopeful that it

will

> someday match the other. I keep pressing, but haven't gotten an

> explanation other than my pediatrician telling me I should ask the

> craniofacial surgeon. It just seems too coincidental with the

> plagio/tort, and I didn't know if any of you had similar

experience.

>

> Now in reference to the " sliding " off the head post...Abby's little

> ear is not only in a posterior position to the other, but it is

> rotated back. The plagio side ear would be at maybe 12 o'clock on

the

> dial where the little one is at 2 o'clock. It this typical with

> plagio as well? If this ear thing isn't plagio/tort related, I want

> to figure out what is going on.

>

> The craniofacialsurgeon, nice as he was, basically blew it off.

Told

> me that it was a mild issue compared to the things he deals with.

He

> wrote me a prescription for tort PT and told me to come back in 3

> months to reevaluate the plagio. BTW, I asked about getting her

into

> a helmet and he told me to wait until after the summer because it's

> too hot. More on that one later.

>

> Thanks!

> Christy & Abby (3 1/2 months)

[Guest guest]

Hi Christy

This is amazing to hear of others stories of ear sizes and

misalignment as I thought I was alone in this one with my daughter

Chloe. Chloe has a flat spot on the right side of her head and the

right ear is further forward and larger in shape compared to the

left. The left ear is slightly turned over at the top. I was told

that the right ear only looks larger because it is pushed further

forward but when they are compared, the right ear is slightly larger

when measured. Chloe is 7 months old and I have noticed some

improvments with the curled ear (left) gradually popping up - i keep

hoping it will catch up but this is wishful thinking. From behind it

doesn't look much different but front on it is noticeable. In fact

well before i noticed the plagio and tort the difference in ear shape

was the first thing I picked up but it was always dismissed as that's

just the way she is. I thought it was too much of a coincidence that

she had tort and plagio for it not to be related.

Chloe has been fitted with a helmet and has been wearing it for 2

weeks. When i next go to the specialist I will mention our collective

stories of curled ears and different sizes and see what they say.

cheers

Beth Chloes mother 7mths

Sydney Aust

> I'm trying to find the post where one of you said your child's ears

> were so misaligned it seemed one of the ears was going to slide

right

> off the head. I can't find it, so I'll ask all of you.

>

> Here's my concern. Abby's ears are way off. I know this is normal

> with plagio, BUT they're not even the same shape. The one on the

tort

> side is significantly smaller and still developing. It has made a

> radical transformation in the last month, so I'm hopeful that it

will

> someday match the other. I keep pressing, but haven't gotten an

> explanation other than my pediatrician telling me I should ask the

> craniofacial surgeon. It just seems too coincidental with the

> plagio/tort, and I didn't know if any of you had similar

experience.

>

> Now in reference to the " sliding " off the head post...Abby's little

> ear is not only in a posterior position to the other, but it is

> rotated back. The plagio side ear would be at maybe 12 o'clock on

the

> dial where the little one is at 2 o'clock. It this typical with

> plagio as well? If this ear thing isn't plagio/tort related, I want

> to figure out what is going on.

>

> The craniofacialsurgeon, nice as he was, basically blew it off.

Told

> me that it was a mild issue compared to the things he deals with.

He

> wrote me a prescription for tort PT and told me to come back in 3

> months to reevaluate the plagio. BTW, I asked about getting her

into

> a helmet and he told me to wait until after the summer because it's

> too hot. More on that one later.

>

> Thanks!

> Christy & Abby (3 1/2 months)

[Guest guest]

Beth,

My daughters has right side plagio.She was also treated for tort. Her

ear on the right is more forward and bigger then the left. I'm

hoping her DOCband will correct it. Please post the reply from your

orthotist after you speak to him/her.

Thanks,

> Hi Christy

>

> This is amazing to hear of others stories of ear sizes and

> misalignment as I thought I was alone in this one with my daughter

> Chloe. Chloe has a flat spot on the right side of her head and the

> right ear is further forward and larger in shape compared to the

> left. The left ear is slightly turned over at the top. I was told

> that the right ear only looks larger because it is pushed further

> forward but when they are compared, the right ear is slightly

larger

> when measured. Chloe is 7 months old and I have noticed some

> improvments with the curled ear (left) gradually popping up - i

keep

> hoping it will catch up but this is wishful thinking. From behind

it

> doesn't look much different but front on it is noticeable. In fact

> well before i noticed the plagio and tort the difference in ear

shape

> was the first thing I picked up but it was always dismissed as

that's

> just the way she is. I thought it was too much of a coincidence

that

> she had tort and plagio for it not to be related.

>

> Chloe has been fitted with a helmet and has been wearing it for 2

> weeks. When i next go to the specialist I will mention our

collective

> stories of curled ears and different sizes and see what they say.

>

> cheers

> Beth Chloes mother 7mths

> Sydney Aust

>

>

>

> --- In Plagiocephaly@y..., " christyludwig " <christyludwig@y...>

wrote:

> > I'm trying to find the post where one of you said your child's

ears

> > were so misaligned it seemed one of the ears was going to slide

> right

> > off the head. I can't find it, so I'll ask all of you.

> >

> > Here's my concern. Abby's ears are way off. I know this is normal

> > with plagio, BUT they're not even the same shape. The one on the

> tort

> > side is significantly smaller and still developing. It has made a

> > radical transformation in the last month, so I'm hopeful that it

> will

> > someday match the other. I keep pressing, but haven't gotten an

> > explanation other than my pediatrician telling me I should ask

the

> > craniofacial surgeon. It just seems too coincidental with the

> > plagio/tort, and I didn't know if any of you had similar

> experience.

> >

> > Now in reference to the " sliding " off the head post...Abby's

little

> > ear is not only in a posterior position to the other, but it is

> > rotated back. The plagio side ear would be at maybe 12 o'clock on

> the

> > dial where the little one is at 2 o'clock. It this typical with

> > plagio as well? If this ear thing isn't plagio/tort related, I

want

> > to figure out what is going on.

> >

> > The craniofacialsurgeon, nice as he was, basically blew it off.

> Told

> > me that it was a mild issue compared to the things he deals with.

> He

> > wrote me a prescription for tort PT and told me to come back in 3

> > months to reevaluate the plagio. BTW, I asked about getting her

> into

> > a helmet and he told me to wait until after the summer because

it's

> > too hot. More on that one later.

> >

> > Thanks!

> > Christy & Abby (3 1/2 months)

[Guest guest]

> > > I'm trying to find the post where one of you said your child's

> ears

> > > were so misaligned it seemed one of the ears was going to slide

> > right

> > > off the head. I can't find it, so I'll ask all of you.

> > >

> > > Here's my concern. Abby's ears are way off. I know this is

normal

> > > with plagio, BUT they're not even the same shape. The one on

the

> > tort

> > > side is significantly smaller and still developing. It has made

a

> > > radical transformation in the last month, so I'm hopeful that

it

> > will

> > > someday match the other. I keep pressing, but haven't gotten an

> > > explanation other than my pediatrician telling me I should ask

> the

> > > craniofacial surgeon. It just seems too coincidental with the

> > > plagio/tort, and I didn't know if any of you had similar

> > experience.

> > >

> > > Now in reference to the " sliding " off the head post...Abby's

> little

> > > ear is not only in a posterior position to the other, but it is

> > > rotated back. The plagio side ear would be at maybe 12 o'clock

on

> > the

> > > dial where the little one is at 2 o'clock. It this typical with

> > > plagio as well? If this ear thing isn't plagio/tort related, I

> want

> > > to figure out what is going on.

> > >

> > > The craniofacialsurgeon, nice as he was, basically blew it off.

> > Told

> > > me that it was a mild issue compared to the things he deals

with.

> > He

> > > wrote me a prescription for tort PT and told me to come back in

3

> > > months to reevaluate the plagio. BTW, I asked about getting her

> > into

> > > a helmet and he told me to wait until after the summer because

> it's

> > > too hot. More on that one later.

> > >

> > > Thanks!

> > > Christy & Abby (3 1/2 months)

[Guest guest]

In a message dated 6/27/2002 6:47:29 PM Eastern Daylight Time, christyludwig@... writes:

' tort ear was further back on his head AND rotated

backwards? You had said "pointed downwards" so I'm guessing we're

talking about the same thing? Like one ear was standing up straight

and the other was laying down?

Christy,

Thanks- we think he's a cutie too (mother's always do!!). I'm really surprised you didn't spot the difference, because when I looked at it again- I was really shocked at just how different they looked (size wise- plus I think one lobe is a little smaller). His ear was further back on his head but I'm not sure what you mean by and rotated backwards? When we first started this, ' ears, from above, with wet hair, you could take your index fingers and put in his ears and notice that one was further backward than the other- the tort ear). Also, from behind, his ear instead of looking like it was standing up straight on the head, looked like it was at an angle, like the ear was pointed in an angle direction downward (does that make any sense?). I guess, yes, now that I write it out, it was like laying down, but it wasn't quite that bad, more just looking from behind that it was lower and at an angle pointed down instead of straight up- so I think we are talking about the same thing- not sure. I had to go to a meeting last night, so I did try to scrutinize the difference in the car before I dropped him at Grandma's, and I could not see the difference in the size of the lobe like I did in the picture- I'm going to really look this weekend because I would like to know myself if over time it has just gotten better looking (sometimes during massage I would even pull lightly on the ear to lengthen it- silly I know! But he didn't seem to mind How old is Abby again? You said she has tort right? How is pt going, or home exercises? Have you decided on the band or not? Sorry, I forget all these things sometimes- and I know I already know this!

Mom

[Guest guest]

Christy,

I do not have any personal experience with the ear situation you describe.

's ears were (and still are to a degree) misaligned. However, she does not

have the issues that you describe. I would be concerned about that as well and

I'm sorry to hear that your specialist blew it off. Perhaps you could press him

on it when you see him next or maybe you could go and see a different specialist

for a second opinion. Most insurance companies will pay for you to have an appt

for a second opinion.

As far as the helmet goes at 3 1/2 months you do have a little time play with,

but the earlier you start the quicker and more complete the results.

Best wishes and let us know how it goes.

Marci (Mom to )

Oklahoma

[Guest guest]

In a message dated 6/28/2002 5:50:13 AM Eastern Daylight Time, chloeozi@... writes:

I first went and she said the ear just looks bigger

because its further forward but i know this is not the full picture

and do actaully differ in size

My ped kind of blew me off too- she said it was just an optical illusion due to the tort and the tilt- but that was a glance- I scrutinized more!

[Guest guest]

In a message dated 6/27/2002 11:46:17 PM Eastern Daylight Time, hags1@... writes:

And I know that once you messaged me about how you would massage 's tort side of his face could you describe again what you did and did you feel that it helped the ear or was it more for the asymmetry??? Thanks

,

received probably 100% correction on the ear misalignment, from above wet, they are perfectly symmetrical, but as I said, sometimes it looks off because the left ear is still smaller (at least to me, I hope one day its something I don't see right off and stop obsessing over it in my mind!). I did light massage in circular motions around the ear, neck, jaw bone and even eye lid. I felt like the whole face was being constricted, either through muscle or nerve endings (he also had that smaller eye) so I would do light circular strokes upwards starting with the neck muscles, and working up around the outside of the ear, in front, and behind the ear, and also the jaw bone. You don't need much pressure- and in craniosacral, they use what is considered a nickel's weight of force- the idea is also to relax the muscle- and mostly I would use 1 or 2 fingers, and try to find pressure points and areas where the bone either connected (jaw bone) or I could feel it (behind the ear, etc). I feel like this enhanced the pt and DOC band treatment, anything that helped, I would try it. And I did try to massage the muscle upwards towards the ear, with the idea that it would create more slack and let the ear go (on average I tried to do this every night before and after my deep stretches were put in). Its hard to describe. I would concentrate on that entire area of the face, including the ear, and just massage all over- but I didn't leave out the non-tort side, I would massage that on occassion as well- including the jaw bone on both sides. I have not talked with the ped regarding any inner ear problems- but I think that's a great idea to discuss it with her. He is doing very well with language, so I don't feel that he has any hearing loss or problems there, but I know some tort kids get more ear infections than others- although he's only had one yet. I will talk it over with my ped though. Hope this helps- anything I left out please email me!

' Mom

[Guest guest]

Hi ,

I also have an ear problem and trouble swallowing. I'm 61 and have

CMT1A.

My ears don't feel like they have water in them but about 10 years

ago I started hearing a very crisp ding in my one ear like a tiny

bell being hit by a metal object. I'd have 5 to 10 at a time several

times a day. After 3 or 4 years it just stopped. About this time I

started losing some hearing. I am wearing hearing aids now and

getting along just fine.

My swallowing problem is my main concern now. It started almost 30

years ago as a very mild discomfort in my mouth when I had food in

it. As the years went on it became harder to swallow food. At first

my neurologist didn't think it was CMT but now he says it is. My

family doctor was the one that helped me. When the problem got to be

bad enough that I needed help he had me try different pills until he

found one that helped me quite a bit. It is Tranxene 7.5 mg 3 times

a day. It is used to treat anxiety and he is not real sure why this

pill helps me but I'm sure glad I have it. I have been taking in for

around 12 years. Actually the generic of it made by the Mylan

company is the one that works for me, not the name brand or other

generics. I get mine at K-Mart.

Sounds like we have a few things in common. I'd like to hear from

you.

Bob

[Guest guest]

Does your doctor know about this? If not I strongly urge you to tell

him/her about it. There might be more to it than you know and it's

better to be safe than sorry. I dont know of any relation to hearing

loss and CMT. Good Luck!

Jane

[Guest guest]

Yes I have that with my ears...don't have trouble swallowing...but my voice gets

weak at the end of the day...my voice another new thing to deal with!! Damn!!

Geri

[Guest guest]

Hi ,

I have not had those symptoms. It must be miserable!

Sounds like you need to put a call into your neurologist and/or an

ENT doctor.

Please take care and keep us posted.

Gigi

[Guest guest]

,

I had this about three months ago. Was really wierd. My ears had too

much wax and a small infection. I used drops my GP gave me, also

irrigated both ears with warm water 3X a day. Problem solved.

Bev

[Guest guest]

Hi Bob and !!!

One week ago I thougth my CMT was a very extrange situation because I didn´t

meet nobody with a particular combination like the mine, but you and me share

some of my symptoms: I have too a very important hearing loss and I have

problems for eat.

I use a hearing aid, but it not ever is the best, especially if we consider

that I´m psychologist and my tool is the word. But my alternatives for this two

little problems has been to do more academic work and less clinic, and eat very

slow, enjoying every little´piece of food, don´t take liquids and solids at the

same time and the most important and the most efective is don´t think that I

don´t listen when somebody talks to me and eat in very good company for don´t

think that I have problems to swallowing.

Bob and , sometime we would have to go to dinner and to have a good

conversation.

[Guest guest]

Thanks for the feedback Bob. My ears will ring, very loudly.

[Guest guest]

I haven't mentioned it to my doctor. I will though.

[Guest guest]

http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=118300

There is a type of CMT associated with deafness.

[Guest guest]

Hi! Yes, this sounds familiar. I also have the feeling of having

water in my ears, but thankfully not constantly. Very irritating.

Sometimes, just before going to sleep, I have difficulty swallowing.

Love, Nina

[Guest guest]

Yes, this was very interesting. For the last 2 years I've had problems with my

right ear. It comes and goes and also feels like I'm at an elevation and my ears

won't pop. I've been to doctors and they haven't been able to figure anything

out. After my last ear, nose & throat visit (waste of money) I finally gave up.

[Guest guest]

I have wax build up in my ears. I have them cleaned by my ear doctor every six

months. I am 55 and my canals are child size. They've always been small.

Barb

[Guest guest]

Long ago I went to an ear doc. also....what they found was a thing peace of skin

covering my ear drums on both ears...felt good when he removed it and could hear

better....strange huh?

Geri