Re: Re: Reconstructive surgery for 3 year old

[Guest guest]

So your son had cranio not plagio? I am glad to hear how well he is doing. Thanks for sharing your story with the group. I am sure it will be a great help.

Angie

Re: Reconstructive surgery for 3 year old

Hi Lesley,My son actually had this surgery in July and he is doing absolutely amazing. There is always risk with surgery, and the doctors will tell you about all the possiblitilites in terms of complications... they have to, it's their job. There are chances of bleeding and infection, blindness... but these are not very common, but like I said, they are possibilities. The first time we were told about the risks, my fiance and I nearly ran. It's a very big decision and we weighed out the options. If we didn't do the surgery, our son would grow up probably hating his appearance and there was always the risk that his brain wouldn't have room to grow. The surgery would correct this, but what if there were complications. Ultimately, the doctor sat us down and said "if I was in your position I would not want to my child to have surgery. I would do what you guys are doing, weigh out the options. However, eventually I would do the surgery." Our son had flattening on his forhead and the doctor explained that if ever walked into a wall there would be nothing protecting his eye and he would do permanent eye damage. The surgery was the best decision for us because is now doing better developmentally (because pressure was starting to occur in the brain) and his head looks amazing. If you're on facebook there is a group called "we love our cranio babies" and there are other parents on their with similar stories. Surgery at this age is a very scary thing... was 16 months... and it'll be the most intense hours of your life.... We never want to see our children suffer, but in 3 days was home and back to his old self. >> Hi,> > My son had moderate plagio. It is enough to bother me. I had him in a helmet at 18 months > but it was really too old to make a big difference.> > I did some research and found a plastic surgeon who does surgery to correct positional > plagio. I have a consultation with him in a few weeks (earliest I could get in) but I basically > know nothing about the surgery. I asked the receptionist who set my app.t and she doesn't > know much but she did tell me a lot of kids like 2-6 year olds come in for abnormal head > shapes and the surgery does correct it. I just am anxious to know the details of it and > mostly how invasive and risky it is (receptionist didn't know).> > Does anyone know about this surgery to correct plagio? > > Thanks for listening,> > >

[Guest guest]

Hi ,

I am still in the process of finding out about it. I think the Receptionist

misunderstood me and thought I was talking about Cranio.

I am waiting to get an appt. with Dr. at Vandy in Nashville. I will find

out much more than and keep everyone posted.

> From: roccocooks <roccocooks@...>

> Subject: Re: Reconstructive surgery for 3 year old

> Plagiocephaly

> Date: Wednesday, August 27, 2008, 10:20 AM

> ,

> This is very interesting to me. My 8 1/2 month daughter

> is in her

> second DOC band and is doing fantastically!

> My 3 1/2 year old son has positional plagio, typical flat

> back of the

> head. Looking at baby pictures now, I see it then but I

> really see it

> now. I actually had a dream about this last night, so

> I'm feeling like

> I should persue this;)

> First where are you? And how did you find this doctor?

> We are in NJ

> and are close to both NY and Philadelphia. And how does a

> plastic

> surgeon correct this with a fully developed skull?

> Thanks!

>

[Guest guest]

Hi All,

My son did have cranio. At first we thought he had positional plagio and even had him in a DOC band. He had his surgery on Monday and I am in his hospital room as I write this. I know the decision to have or not have surgery is one of the most difficult decisions you will ever make, and I would certainly not tell you what you should do. All I can say is make sure that you are prepared for the surgery if you go this way. I thought that once the surgery was over, it would all be healing and therefore would be much more easy, at least mentally. The recovery is also one of the toughest things that you will do. Even with all of my research I was not nearly prepared enough for this experience, and I am not sure that you ever can be.

, I am writing because my son had his surgery in NYC and I highly reccommend my neurosurgeon/plastic surgeon team. This is the team that separated the Aguillera twins in '04. (these twins were cojoined at the head). They are Dr. Goodrich (pediatric neurosurgeon) and Dr. Staffenberg (pediatric craniofacial plastic surgeon). They work out of Montefiore in the Bronx. We did not seek a second opnion, but I can tell you that there is a craniofacial center at NYU as well. It is also highly respected. Dr Harter is the neurosurgeon there. It takes about a month to get a first appointment with these guys. It may take less time with Dr. Staffenberg. I do know that Dr Goodrich has done this surgery on a 5 year old.

Good luck and let me know if I can help.

Audra

Re: Reconstructive surgery for 3 year old

,This is very interesting to me. My 8 1/2 month daughter is in her second DOC band and is doing fantastically!My 3 1/2 year old son has positional plagio, typical flat back of the head. Looking at baby pictures now, I see it then but I really see it now. I actually had a dream about this last night, so I'm feeling like I should persue this;)First where are you? And how did you find this doctor? We are in NJ and are close to both NY and Philadelphia. And how does a plastic surgeon correct this with a fully developed skull?Thanks!

[Guest guest]

When your son had the surgery did he have craniosyntosis or just a case of

positional plagiocephaly?

Molly

Novato, California

Nicolas, 2.5, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06,

Graduate!

, 5.5

, 8.5

Re: Reconstructive surgery for 3 year old

Hi Lesley,

My son actually had this surgery in July and he is doing absolutely

amazing. There is always risk with surgery, and the doctors will

tell you about all the possiblitilites in terms of complications...

they have to, it's their job. There are chances of bleeding and

infection, blindness... but these are not very common, but like I

said, they are possibilities. The first time we were told about the

risks, my fiance and I nearly ran. It's a very big decision and we

weighed out the options. If we didn't do the surgery, our son would

grow up probably hating his appearance and there was always the risk

that his brain wouldn't have room to grow. The surgery would correct

this, but what if there were complications. Ultimately, the doctor

sat us down and said " if I was in your position I would not want to

my child to have surgery. I would do what you guys are doing, weigh

out the options. However, eventually I would do the surgery. " Our

son had flattening on his forhead and the doctor explained that if

ever walked into a wall there would be nothing protecting his

eye and he would do permanent eye damage. The surgery was the best

decision for us because is now doing better developmentally

(because pressure was starting to occur in the brain) and his head

looks amazing. If you're on facebook there is a group called " we

love our cranio babies " and there are other parents on their with

similar stories. Surgery at this age is a very scary thing...

was 16 months... and it'll be the most intense hours of your

life.... We never want to see our children suffer, but in 3 days

was home and back to his old self.

>

> Hi,

>

> My son had moderate plagio. It is enough to bother me. I had him

in a helmet at 18 months

> but it was really too old to make a big difference.

>

> I did some research and found a plastic surgeon who does surgery to

correct positional

> plagio. I have a consultation with him in a few weeks (earliest I

could get in) but I basically

> know nothing about the surgery. I asked the receptionist who set

my app.t and she doesn't

> know much but she did tell me a lot of kids like 2-6 year olds come

in for abnormal head

> shapes and the surgery does correct it. I just am anxious to

know the details of it and

> mostly how invasive and risky it is (receptionist didn't know).

>

> Does anyone know about this surgery to correct plagio?

>

> Thanks for listening,

>

>

>

------------------------------------

For more plagio info

[Guest guest]

Audra,

Thank you so much for the information and recommenations!

I go into CT tomorrow and will ask them if they've heard anything.

From: Audra <audracox@...>Subject: Re: Re: Reconstructive surgery for 3 year oldPlagiocephaly Date: Wednesday, August 27, 2008, 3:59 PM

Hi All,

My son did have cranio. At first we thought he had positional plagio and even had him in a DOC band. He had his surgery on Monday and I am in his hospital room as I write this. I know the decision to have or not have surgery is one of the most difficult decisions you will ever make, and I would certainly not tell you what you should do. All I can say is make sure that you are prepared for the surgery if you go this way. I thought that once the surgery was over, it would all be healing and therefore would be much more easy, at least mentally. The recovery is also one of the toughest things that you will do. Even with all of my research I was not nearly prepared enough for this experience, and I am not sure that you ever can be.

, I am writing because my son had his surgery in NYC and I highly reccommend my neurosurgeon/ plastic surgeon team. This is the team that separated the Aguillera twins in '04. (these twins were cojoined at the head). They are Dr. Goodrich (pediatric neurosurgeon) and Dr. Staffenberg (pediatric craniofacial plastic surgeon). They work out of Montefiore in the Bronx. We did not seek a second opnion, but I can tell you that there is a craniofacial center at NYU as well. It is also highly respected. Dr Harter is the neurosurgeon there. It takes about a month to get a first appointment with these guys. It may take less time with Dr. Staffenberg. I do know that Dr Goodrich has done this surgery on a 5 year old.

Good luck and let me know if I can help.

Audra

Re: Reconstructive surgery for 3 year old

,This is very interesting to me. My 8 1/2 month daughter is in her second DOC band and is doing fantastically!My 3 1/2 year old son has positional plagio, typical flat back of the head. Looking at baby pictures now, I see it then but I really see it now. I actually had a dream about this last night, so I'm feeling like I should persue this;)First where are you? And how did you find this doctor? We are in NJ and are close to both NY and Philadelphia. And how does a plastic surgeon correct this with a fully developed skull?Thanks!