Re: Hello Im new to the list

[Guest guest]

I still find it too much of a coincidence that he has most of the symptoms

of HMF but without the jaw problem so I'm not totally convinced that

it is not another variation

I was advised that the cause was possibly a bleed early on in his development (coincidently I had a flu/fever at 9weeks pregnant and I often wonder if this had anything to do with it)

If anyone has any experiences of treatment in the UK I would appreciate it

Thanks

Dianne

dianne

sheri is the resident expert on this stuff...

sherrrrriiiiii!!!!! any connections?

maybe you could find out from nyu (in nyc) craniofacial team a good referral to a team like that in UK.. you just might be correct you know!

jack

[Guest guest]

!) I'm not sure what circumstances merit a HFM or Goldenhar classification anymore...I'm not even so sure the "experts"know! I know that there is a surgeon in Texas who is repairing damaged nerves in the face. I do not have anything on him right now, but I will check into it for you, maybe he can refer you to someone in the UK.

i once heard brent (hmmm maybe it was dr j? i cant remember) at a lecture that in a VERY early surgery (# 1 or 2) he had sliced a facial nerve which resulted in a partial paralysis, BUT THAT IT REPAIRED ITSELF WITHIN A FEW MONTHS) HE SAID FURTHER, THAT IT OF COURSE TAUGHT HIM WHERE to look for it WHICH IN THE CASE OF MICROTIC KIDS, HE LEARNED THAT IT IS A FEW MILLIMETERS OFF THE NORMATIVE. u may want to check my "fact" but repair of that nerve may not be surgically "necessary"..

jack

[Guest guest]

Hello Dianne!

Welcome aboard! I have a son Josh who is 9 and has microtia with HFM on the right side. His orbital area is not affected, but his jaw and cheek are smaller on the right side. He also has a slightly crooked smile (Not sure if this is nerve damage or his father's genes!) I'm not sure what circumstances merit a HFM or Goldenhar classification anymore...I'm not even so sure the "experts"know! I know that there is a surgeon in Texas who is repairing damaged nerves in the face. I do not have anything on him right now, but I will check into it for you, maybe he can refer you to someone in the UK.

Love, beth

>From: "Dianne "

>Reply-To: AtresiaMicrotia >To:

>Subject: Hello Im new to the list >Date: Tue, 5 Feb 2002 23:34:10 -0000 > >Hello my name is Dianne and I'm mum to Ben 2 1/2 years old who has microtia of the right ear (small, not quite the right shape and thinner without much cartilage) a damaged facial nerve which causes a palsy down the right side of his face, >which affects his eye lid slightly his mouth which drops to the left side, and his cheek is slightly flatter on the right side, although the plastic surgeon has advised us he doesn't have HFM as his teeth are aligned perfectly top to bottom, this indicates his jaw is ok, and the droop of his mouth to one side is a result of >the mouth muscles on his good side overcompensating and this makes it >look as if his jaw is out. > >They will operate on his small ear but will wait until he is 4. however I'm not too sure what they intend to do as I don't believe rib grafts are done in the UK > >They are going to monitor him just incase anything gets worse. > I'm still waiting to hear from >the ENT re a hearing test but they have referred him so I hope to hear soon. > >I still find it too much of a coincidence that he has most of the symptoms >of HMF but without the jaw problem so I'm not totally convinced that >it is not another variation >I was advised that the cause was possibly a bleed early on in his development (coincidently I had a flu/fever at 9weeks pregnant and I often wonder if this had anything to do with it) > >If anyone has any experiences of treatment in the UK I would appreciate it >Thanks >Dianne Chat with friends online, try MSN Messenger: Click Here

[Guest guest]

Actually, I'm only the resident expert on the genetic stuff. And only a "lay expert" at that.

Sorry

Sheri

-----Original Message-----From: GrossInsCo@... Sent: Tuesday, February 05, 2002 6:56 PMTo: AtresiaMicrotia Subject: Re: Hello Im new to the list

I still find it too much of a coincidence that he has most of the symptoms of HMF but without the jaw problem so I'm not totally convinced that it is not another variation I was advised that the cause was possibly a bleed early on in his development (coincidently I had a flu/fever at 9weeks pregnant and I often wonder if this had anything to do with it) If anyone has any experiences of treatment in the UK I would appreciate it Thanks Dianne dianne sheri is the resident expert on this stuff... sherrrrriiiiii!!!!! any connections? maybe you could find out from nyu (in nyc) craniofacial team a good referral to a team like that in UK.. you just might be correct you know! jack

[Guest guest]

That accidental severing of the facial nerve may have happened prior to the invention of facial nerve monitors. An ex-boyfriend of mine (who happens to be the ENT surgeon who pointed me to Dr. Brent many years ago) told me that any surgeon who cuts the facial nerve when using the monitor is negligent, and anyone who doesn't use a facial nerve monitor during major ENT surgery is *grossly* negligent. So I personally think this is a threshhold question you should be asking your surgeon when deciding who to go with.

I am also told that bad cranial nerve placement is very common with Atresia, BTW. More so than Microtia I think, because the major cranial nerves are not exposed in the external ear structure. The cranial nerves (there are several of them) can be in the wrong place and actually not be "salvagable" (their word, not mine) when creating new ear canals. I know Dr. Roberson came out of the operating room in the middle of Patty's canalplasty to tell me that he couldn't save one of her cranial nerves. It was the one that controls some taste and little else, so she's never noticed that she doesn't have it.

Sheri

wow!

thanks (as always!)..

i KNOW it was before facial nerve monitors because i am going back at LEAST 15 years to the remark, and *that* surgery was considered a LONG time ago even *then*.

facial nerve cutting was touted as *the* reason for NOT doing the surgery and when WE asked about it (1980) we were told it was no longer a medical risk by both brent & dr j, IN THE HANDS OF THE RIGHT SURGEON.

the remark that one of them HAD the experience was made in response to a q from the audience years later.

jack

[Guest guest]

Hi Diane,

Welcome to the group - my name is and I have a 7 month old son Conor who

was born with microtia and atresia to his right ear. We live in Ireland - just

accross the water from you! You are the first person I have come in contact with

who lives in this part of the world! I don't know anybody else in Ireland or

England with microtia/atresia. What part of England do you live in? I was born

in England myself and still have lots of relatives in the midlands.

The rib cartlidge operation is available in the UK - our ENT consultant used to

work in Great Ormond Street Hospital with a plastic surgeon who he has

recommended to us. The surgeon he recommended to do this is Dr Gault and

his email address is: dg@.... Phone: 01628 891333. He also has a

website: earreconstruction.co.uk or you can look at www.davidgault.co.uk

Apparently his results are very good, according to our ENT consultant here in

Ireland who worked with him.

As for the bleed being the cause, as far as I know the cause of microtia and

atresia is unknown. I didn't have any bleeding during my preganancy so don't

blame yourself! My favourite theory is one about failed twin pregnancy by Dr

Jane from Great Ormond Street - see web page:

www.ich.ucl.ac.uk/patients_fam/collins/columns/ears.htm

Nice to hear from you Diane - I'm delighted to find somebody who lives so near.

I've yet to find somebody who microtia/atresia in Ireland!

Take Care

Leigh

AtresiaMicrotia wrote:

<

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< charset= " iso-8859-1 "

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< Hello my name is Dianne and I'm mum to Ben 2 1/2 years old who has microti=

< a of the right ear (small, not quite the right shape and thinner without mu=

< ch cartilage) a damaged facial nerve which causes a palsy down the right =

< side of his face,

< which affects his eye lid slightly his mouth which drops to the left side, =

< and his cheek is slightly flatter on the right side, although the plastic s=

< urgeon has advised us he doesn't have HFM as his teeth are aligned perfectl=

< y top to bottom, this indicates his jaw is ok, and the droop of his mouth t=

< o one side is a result of

< the mouth muscles on his good side overcompensating and this makes it

< look as if his jaw is out.=20=20

<

< They will operate on his small ear but will wait until he is 4. however I'=

< m not too sure what they intend to do as I don't believe rib grafts are don=

< e in the UK

<

< They are going to monitor him just incase anything gets worse.=20=20

< I'm still waiting to hear from

< the ENT re a hearing test but they have referred him so I hope to hear soon=

< ..

<

< I still find it too much of a coincidence that he has most of the symptoms

< of HMF but without the jaw problem so I'm not totally convinced that

< it is not another variation

< I was advised that the cause was possibly a bleed early on in his developm=

< ent (coincidently I had a flu/fever at 9weeks pregnant and I often wonder =

< if this had anything to do with it)

<

< If anyone has any experiences of treatment in the UK I would appreciate it=

< =20

< Thanks=20

< Dianne

<

< ------=_NextPart_000_0008_01C1AE9D.9D0A9720

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<

<

<

<

<

<

<

<

<

<

< Hello my name is Dianne and I'm mum to Ben 2 1/2

< years old who has  microtia of the right ear (small, not quite the

< right shape and thinner without much cartilage)  a

< damaged  facial nerve which causes a palsy down the right side of

< his face,which affects his eye lid slightly his mouth which drops

< to the left side, and his cheek is slightly flatter on the right side,

although

< the plastic surgeon has advised us he doesn't have HFM as his teeth are

aligned

< perfectly top to bottom, this indicates his jaw is ok, and the droop of his

< mouth to one side is a result ofthe mouth muscles on his good side

< overcompensating and this makes itlook as if his jaw is out. 

<  

< They will operate on his small ear but

will

< wait until he is 4.  however I'm not too sure what they intend to do as I

< don't believe rib grafts are done in the UK

<  

< They are going to monitor him just incase anything gets

< worse.  

<  I'm still waiting to hear fromthe ENT re a hearing test but they

< have referred him so I hope to hear soon.I still find it too much of

a

< coincidence that he has most of the symptomsof HMF but without the jaw

< problem so I'm not totally convinced thatit is not another

variation

< I was advised that the cause was possibly a bleed early on in

< his  development (coincidently I had a flu/fever at 9weeks pregnant

< and I  often wonder if this had anything to do with it)

< If anyone has any experiences of treatment in

the

< UK I would appreciate it

< Thanks

< Dianne

<

<

<

<

<

<

< Yahoo! Groups

Sponsor

<

<

< ADVERTISEMENThttp://rd.yahoo.com/M=219350.1849046.3355884.1691666/D=egroupweb/S=1705062\

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[Guest guest]

Diane,

Welcome to the group!

>As for the bleed being the cause, as far as I know the cause of microtia

and atresia is unknown. I didn't have any >bleeding during my preganancy so

don't blame yourself! My favourite theory is one about failed twin

pregnancy by Dr >Jane from Great Ormond Street - see web page:

www.ich.ucl.ac.uk/patients_fam/collins/columns/ears.htm

Just a comment or two as to the cause of microtia and atresia. I also had

bleeding early in pregnancy, which also made me wonder, the timing as I

remember it, was about right with the development of the ears (as stated by

Dr. ). The other thing that's always worried me is that I

conceived Nate while I was taking birth control pills. Since one of the

many warnings on the pills are possibilities of birth defects, I've

wondered if anyone else might have that link.

I wanted to thank beth, and for your stories - they have

been extremely helpful. Now I feel more capable of making an educated

decision when the time comes. Thank you, Thank you!

Leanne (mother of Nate),

[Guest guest]

That accidental severing of the facial nerve may have happened prior to the invention of facial nerve monitors. An ex-boyfriend of mine (who happens to be the ENT surgeon who pointed me to Dr. Brent many years ago) told me that any surgeon who cuts the facial nerve when using the monitor is negligent, and anyone who doesn't use a facial nerve monitor during major ENT surgery is *grossly* negligent. So I personally think this is a threshhold question you should be asking your surgeon when deciding who to go with.

I am also told that bad cranial nerve placement is very common with Atresia, BTW. More so than Microtia I think, because the major cranial nerves are not exposed in the external ear structure. The cranial nerves (there are several of them) can be in the wrong place and actually not be "salvagable" (their word, not mine) when creating new ear canals. I know Dr. Roberson came out of the operating room in the middle of Patty's canalplasty to tell me that he couldn't save one of her cranial nerves. It was the one that controls some taste and little else, so she's never noticed that she doesn't have it.

Sheri

-----Original Message-----From: GrossInsCo@... Sent: Wednesday, February 06, 2002 12:21 PMTo: AtresiaMicrotia Subject: Re: Hello Im new to the list

!) I'm not sure what circumstances merit a HFM or Goldenhar classification anymore...I'm not even so sure the "experts"know! I know that there is a surgeon in Texas who is repairing damaged nerves in the face. I do not have anything on him right now, but I will check into it for you, maybe he can refer you to someone in the UK.i once heard brent (hmmm maybe it was dr j? i cant remember) at a lecture that in a VERY early surgery (# 1 or 2) he had sliced a facial nerve which resulted in a partial paralysis, BUT THAT IT REPAIRED ITSELF WITHIN A FEW MONTHS) HE SAID FURTHER, THAT IT OF COURSE TAUGHT HIM WHERE to look for it WHICH IN THE CASE OF MICROTIC KIDS, HE LEARNED THAT IT IS A FEW MILLIMETERS OFF THE NORMATIVE. u may want to check my "fact" but repair of that nerve may not be surgically "necessary".. jack

[Guest guest]

Jeannie

Thanks for your reply

its difficult to get a second opinion in the UK but I am working on it.

I have uploaded some photos of Ben and his ear etc if anyone wants to see them they are under Ben

thanks again Dianne

Re: Hello Im new to the list

Hi Dianne (and Ben)Welcome! I have a 2 yo son born with microtia on the left side and mild HFM. What you have described of your sounds like HFM, especially because you mention the facial nerve paralysis. Maybe, its a very mild case. Is it possible for you to get a second opinion? I only say this because, you seemed to be a little unconvinced of the plastic surgeon's assessment of your son. Anyway, welcome again. And don't be afraid to ask any questions you may have. Jeannie

[Guest guest]

thank you beth

I have noticed your posts on the goldenhar group but I tend to be a silent witness if you now what I mean.

I would be very interested in any info on facial nerve repair as I have been told there is little they can do here, The plastic surgeon (Miss Reid) we see is very good with clefts etc but I don't think she has had much experience with HMF/goldenhar etc

We were told that the only thing they could do would be to cut the good nerve on the other side of his face to make his smile symmetrical but she did not agree with that method. She then pointed out that one of our popular news reporters in the UK (Kate Aide) has a similar problem and I must admit I had not noticed until then, she has the same droop to her mouth, however that does not help me feel any better for my little Boy

your help is most appreciated

Hello Im new to the list >Date: Tue, 5 Feb 2002 23:34:10 -0000 > >Hello my name is Dianne and I'm mum to Ben 2 1/2 years old who has microtia of the right ear (small, not quite the right shape and thinner without much cartilage) a damaged facial nerve which causes a palsy down the right side of his face, >which affects his eye lid slightly his mouth which drops to the left side, and his cheek is slightly flatter on the right side, although the plastic surgeon has advised us he doesn't have HFM as his teeth are aligned perfectly top to bottom, this indicates his jaw is ok, and the droop of his mouth to one side is a result of >the mouth muscles on his good side overcompensating and this makes it >look as if his jaw is out. > >They will operate on his small ear but will wait until he is 4. however I'm not too sure what they intend to do as I don't believe rib grafts are done in the UK > >They are going to monitor him just incase anything gets worse. > I'm still waiting to hear from >the ENT re a hearing test but they have referred him so I hope to hear soon. > >I still find it too much of a coincidence that he has most of the symptoms >of HMF but without the jaw problem so I'm not totally convinced that >it is not another variation >I was advised that the cause was possibly a bleed early on in his development (coincidently I had a flu/fever at 9weeks pregnant and I often wonder if this had anything to do with it) > >If anyone has any experiences of treatment in the UK I would appreciate it >Thanks >Dianne

Chat with friends online, try MSN Messenger: Click Here

[Guest guest]

hello

We are from Newcastle upon Tyne

There is also a Lady in Scotland Near Glasgow she is a member of the

Goldenhar group and has been a great help with info.

I have struggled so far to get anyone to give me a diagnosis for Ben and

have been given lots of conflicting advise from the hospital as we don't

always get to see the Consultant and her registrars don't seam to have a

clue. Im still chasing a Hearing check for Ben although his speech is good I

worry incase he has any issues inside the ear that haven't been found yet.

Infact I worry encase he has any other issues full stop as wehave not been

offered any scans or other checks and I have been considering contacting

another hospital

so I will read your links with interest

Thank you

regards Dianne

Re: Hello Im new to the list

> Hi Diane,

>

> Welcome to the group - my name is and I have a 7 month old son Conor

who was born with microtia and atresia to his right ear. We live in

Ireland - just accross the water from you! You are the first person I have

come in contact with who lives in this part of the world! I don't know

anybody else in Ireland or England with microtia/atresia. What part of

England do you live in? I was born in England myself and still have lots of

relatives in the midlands.

>

> The rib cartlidge operation is available in the UK - our ENT consultant

used to work in Great Ormond Street Hospital with a plastic surgeon who he

has recommended to us. The surgeon he recommended to do this is Dr

Gault and his email address is: dg@.... Phone: 01628 891333. He

also has a website: earreconstruction.co.uk or you can look at

www.davidgault.co.uk

> Apparently his results are very good, according to our ENT consultant here

in Ireland who worked with him.

>

> As for the bleed being the cause, as far as I know the cause of microtia

and atresia is unknown. I didn't have any bleeding during my preganancy so

don't blame yourself! My favourite theory is one about failed twin pregnancy

by Dr Jane from Great Ormond Street - see web page:

www.ich.ucl.ac.uk/patients_fam/collins/columns/ears.htm

>

> Nice to hear from you Diane - I'm delighted to find somebody who lives so

near. I've yet to find somebody who microtia/atresia in Ireland!

>

> Take Care

>

> Leigh

>

>

> AtresiaMicrotia wrote:

>

> <

> < ------=_NextPart_000_0008_01C1AE9D.9D0A9720

> < Content-Type: text/plain;

> < charset= " iso-8859-1 "

> < Content-Transfer-Encoding: quoted-printable

> <

> < Hello my name is Dianne and I'm mum to Ben 2 1/2 years old who has

microti=

> < a of the right ear (small, not quite the right shape and thinner

without mu=

> < ch cartilage) a damaged facial nerve which causes a palsy down the

right =

> < side of his face,

> < which affects his eye lid slightly his mouth which drops to the left

side, =

> < and his cheek is slightly flatter on the right side, although the

plastic s=

> < urgeon has advised us he doesn't have HFM as his teeth are aligned

perfectl=

> < y top to bottom, this indicates his jaw is ok, and the droop of his

mouth t=

> < o one side is a result of

> < the mouth muscles on his good side overcompensating and this makes it

> < look as if his jaw is out.=20=20

> <

> < They will operate on his small ear but will wait until he is 4.

however I'=

> < m not too sure what they intend to do as I don't believe rib grafts are

don=

> < e in the UK

> <

> < They are going to monitor him just incase anything gets worse.=20=20

> < I'm still waiting to hear from

> < the ENT re a hearing test but they have referred him so I hope to hear

soon=

> < ..

> <

> < I still find it too much of a coincidence that he has most of the

symptoms

> < of HMF but without the jaw problem so I'm not totally convinced that

> < it is not another variation

> < I was advised that the cause was possibly a bleed early on in his

developm=

> < ent (coincidently I had a flu/fever at 9weeks pregnant and I often

wonder =

> < if this had anything to do with it)

> <

> < If anyone has any experiences of treatment in the UK I would appreciate

it=

> < =20

> < Thanks=20

> < Dianne

> <

> < ------=_NextPart_000_0008_01C1AE9D.9D0A9720

> < Content-Type: text/html; charset=US-ASCII

> < Content-Transfer-Encoding: 7bit

> <

> <

> <

> <

> <

> <

> <

> <

> <

> <

> < Hello my name is Dianne and I'm mum to Ben

2 1/2

> < years old who has microtia of the right ear (small, not quite

the

> < right shape and thinner without much cartilage) a

> < damaged facial nerve which causes a palsy down the right side of

> < his face,which affects his eye lid slightly his mouth which drops

> < to the left side, and his cheek is slightly flatter on the right side,

although

> < the plastic surgeon has advised us he doesn't have HFM as his teeth are

aligned

> < perfectly top to bottom, this indicates his jaw is ok, and the droop of

his

> < mouth to one side is a result ofthe mouth muscles on his good side

> < overcompensating and this makes itlook as if his jaw is out.

> <

> < They will operate on his small ear

but will

> < wait until he is 4. however I'm not too sure what they intend to do as

I

> < don't believe rib grafts are done in the UK

> <

> < They are going to monitor him just incase anything gets

> < worse.

> < I'm still waiting to hear fromthe ENT re a hearing test but

they

> < have referred him so I hope to hear soon.I still find it too

much of a

> < coincidence that he has most of the symptomsof HMF but without the

jaw

> < problem so I'm not totally convinced thatit is not another

variation

> < I was advised that the cause was possibly a bleed early on in

> < his development (coincidently I had a flu/fever at 9weeks pregnant

> < and I often wonder if this had anything to do with it)

> < If anyone has any experiences of treatment

in the

> < UK I would appreciate it

> < Thanks

> < Dianne

> <

> <

> <

> <

> <

> <

> < Yahoo! Groups

Sponsor

> <

> <

> < ADVERTISEMENThttp://rd.yahoo.com/M=219350.1849046.3355884.1691666/D=egroupweb/S=170

5062215:HM/A=935586/R=0/*http://www.gotomypc.com/u/tr/yh/grp/300_g2_01/g22lp

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pmail/S=1705062215:HM/A=935586/rand=518310787 " >

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> <

> <

> <

> <

> <

> <

> <