Re: Adult Plagiocephaly (surgical treatments?)

[Guest guest]

Doogie,

YES,YES,YES!! I know I've read 2 different storys... from 2 different

men on this message board... One I know had surgery, I think he was

in his 20's when he had it..so I know it is possible. I hope one of

the moderators that have been here for a long time, chime in and

point you in the right direction! I don't mean to sound rude,so

please don't be offended. Where is your head flat? On the side, in

the back? Are you male or female? How old are you?

This really floors me... I think it is so messed up that even adults

have to suffer through this. I don't understand why the medical

communtiy can't get it together and HELP EVERY PLAGIO BABY! If they

did, there wouldn't be any adults out there looking for help. I wish

you nothing but the best. Welcome to the group... you've found a

GREAT place for support the members here are the best! Please keep us

posted.

)

> I was wondering if there were cranial surgery treaments for adults

> with plagiocephaly. I've looked through a vast number of sources

> but every one was related to infants or very young children with

> cranial abnormalities. I was not lucky enough for my parents to

> treat me at a younger age so I'm seeking alternative surgical

> treaments now or in the near future. I was wondering if anyone

> could provide me with some informational and answer some of my

> questions, I've tried medical message boards and WebMD already to

no

> avail.

>

> Thanks in advance.

[Guest guest]

Tony,

Hi and welcome! Unfortunately, I do not know much about the procedures of correcting adult plagiocephaly. All I know about this unfortunate condition is what it has done to my child and other children around the world in the last 10 years. I have a 17-month-old son named with plagiocephaly on the right side of his head. He underwent some helmet treatment, but regretfully, we had a passive helmet, not the wonderful bands that many children here have, and we were a little past the optimal time period of which it would have been effective. However, at 17 months, his head has rounded out wonderfully and no one even notices it much anymore. Really I am the only one who notices it. The only thing I'm really worried about now is that since the plagio is still there on my son's right side, baseball caps really don't fit him well. Since he is a boy, I think that and the prospect of sports helmets some day is a valid concern. Also, I have been told my doctors that even if his head doesn't round out completely, he's got such a great happy personality that no one will ever notice. At first that made me happy, but then I got to thinking: Of course he's happy now. He's a baby and he has no concept of his looks. I was wondering if you have suffered emotionally from your head shape? Did you ever get teased or are you self-conscious about it? I am worried about my son in the trying times of his life, such as his teen years, which at 17, I'm sure you know a lot about that. I am worried that my son's "happy disposition" might disappear after being teased a few times and develop a low self-esteem. I was a happy baby too, but once a person's idea of self-image develops, I know how hard it is to get past things when you think people are laughing at your looks. I mean, I had bad hair and crooked teeth and I got teased. Those are things that are easily corrected and I still got teased! I was just interested in your experiences throughout high school and such, and if anyone really noticed your head shape. Thanks for any input you have and good luck in your research.

Kellie

Olympia, WA

[Guest guest]

Thanks for the quick response. Sorry, I forgot to mention. I'm

male, 17. Head is symmetrically flattened in the back (lambdoidal,)

forming a trapezoidal shape (smaller infront.) This was probably

caused by back sleeping. My parents told me they constantly shifted

me to my back because I had a tendency to lean towards one side

while I'm asleep, hence my now *flawless* trapezoidal shaped head,

but they don't think it's a big deal as it's not very severe and

I've never suffered any problems.

I guess I'm seeking surgery for purely cosmetic (and psychological)

reasons. This probably sounds silly, but I bet I've spent more

money on hair cuts than what the surgical procedure will cost to

make my head look " normal. " I do believe that the medical community

should educate more on positional plagiocephaly, if not for obvious

medical concerns, think of what your kids will have to grow up with.

I have some fundamental questions and concerns regarding to surgery

and the growth of cranium/brain. Anyone have any idea how surgery's

done, the risks concerned, the success rate, and do they use...

metal plates? Is the brain by any way or form shaped by the

structure of the cranium? (ehh.. is my brain a trapezoid too, like

my skull?) That would indeed be quite awkward to work with, I think

I need to brush up on some anatomy. Any information would help.

Thanks a lot!!!

Tony

> > I was wondering if there were cranial surgery treaments for

adults

> > with plagiocephaly. I've looked through a vast number of

sources

> > but every one was related to infants or very young children with

> > cranial abnormalities. I was not lucky enough for my parents to

> > treat me at a younger age so I'm seeking alternative surgical

> > treaments now or in the near future. I was wondering if anyone

> > could provide me with some informational and answer some of my

> > questions, I've tried medical message boards and WebMD already

to

> no

> > avail.

> >

> > Thanks in advance.

[Guest guest]

Hi & welcome to our group:

We did have a member from last fall who posted that he rec'd some

sort of implants to the flat side of his head. Unfortunately though,

I heard recently that he had to have the implants removed for some

reason, I cannot remember why. I'll search the archive again to

see. Sorry to hear of your predicatment I'm sure it's difficult.

Have you discussed any options with any specialists, like a

neurosurgeon?

Debbie Abby's mom

MI

Here's the post:

From: " jason s " <scubaj357@...>

Date: Mon Nov 12, 2001 11:29 pm

Subject: Re: S to answer DangerLeigh's Mommy question

I am just turned 27 years old and I just had the surgery on July 30

2001. I

actually flew back and forth from Phoenix to San Diego to see my

specialist.

At my age all that could be done was to fabricate an implant that

would

make my head look more normal. So Basically the surgeon made a nice 6

inch

incision in the back of my head. Then he attached the implant with

screws

that went in to my skull. If I feel my head I can feel the implant.

They

say it will take a while to settle. All I can say is I can now put on

a

cap, and IT FITS!

You cant imagine waiting 27 years to finally wear a baseball cap.

I am open to any and all questions.

By the way you can tell your insurence boys to call me. I will get in

the

ring with them.

> I was wondering if there were cranial surgery treaments for adults

> with plagiocephaly. I've looked through a vast number of sources

> but every one was related to infants or very young children with

> cranial abnormalities. I was not lucky enough for my parents to

> treat me at a younger age so I'm seeking alternative surgical

> treaments now or in the near future. I was wondering if anyone

> could provide me with some informational and answer some of my

> questions, I've tried medical message boards and WebMD already to

no

> avail.

>

> Thanks in advance.

[Guest guest]

Hello and welcome! I'm sorry to hear of the problems you are experiencing now

due to plagio. It further confirms in my mind that treating my baby was the

best thing I've ever done. It all fairness to your parents, the kind of

helmet/band therapy that our children go through today is very new and

probably wasn't even around when you were a baby.

It seems as if your concerns are very serious and significant to you. I would

highly recommend seeing if you could have a consultation with a neurosurgeon

or a cranial-facial specialist if for no other reason then to get some

answers to the excellent questions you pose about skull growth and the shape

of your brain. Have you noticed any other medical conditions that might be

related to the plagio?

Best of luck to you and I hope you will stick with our group.

Marci (Mom to )

Oklahoma

[Guest guest]

would you post a picture???

beck

[Guest guest]

Hey where are you from?/?

Beck

[Guest guest]

Hi Tony,

I am so glad that you have found your way to this group! Although,

I don't have any answers for you, I can bet that tonnes of mothers

with plagio babies are itching with curiosity to know your

experience growing up with plagio. Here you are, potentially, the

voice of our children at 17:) It would really help to know what

might go through the minds of our sons at your age and when you were

growing up. I have an 8 month old baby boy with plagiocephaly on

the right side. I don't know how much correction my baby will get

because he hasn't gotton the helmet yet (it takes a while). When

were you first aware that your head was flattened at the back? Were

you really sensitive about it? Any advice for moms and kids who

won't receive 100% correction with their helmets?

I hope that you find some good information out there. I will keep

my eyes peeled.

(Kale's mom)

> > > I was wondering if there were cranial surgery treaments for

> adults

> > > with plagiocephaly. I've looked through a vast number of

> sources

> > > but every one was related to infants or very young children

with

> > > cranial abnormalities. I was not lucky enough for my parents

to

> > > treat me at a younger age so I'm seeking alternative surgical

> > > treaments now or in the near future. I was wondering if anyone

> > > could provide me with some informational and answer some of my

> > > questions, I've tried medical message boards and WebMD already

> to

> > no

> > > avail.

> > >

> > > Thanks in advance.

[Guest guest]

Ouch! That sounds rather unpleasant. I haven't really discussed

with any specialists yet, just wanted some background information on

the procedures so I know what to expect. I'll be starting college

in the fall and plan to intern during the next four summers (in

order to get in grad school,) so I probably won't have the time to

surgery. I think I'm planning on getting something done after

college or even grad school, I just hope they don't kill too many

brain cells in the process, or my 18 years of education will all be

for naught.

As for the previous person's ('s) post, he mentioned they

inserted an implant? Wouldn't that just make his head look bigger?

I don't know about his specific case of plagiocephaly, but the

flattening of the back of my head caused the whole back side to

flatten out, much like a pancake, it flattens as well as enlarges.

So do they saw the extra parts off and seal it with metal plates?

That would mean I would also need hair implants. Head vs. Hair, I

still have plenty of time to decide... Thank you Debbie for taking

the time to dig up that post!

Best,

Tony

P.S. I've made a seperate post for Kellie and Marcie regarding to

growing up with Plagio and related medical conditions.

> > I was wondering if there were cranial surgery treaments for

adults

> > with plagiocephaly. I've looked through a vast number of

sources

> > but every one was related to infants or very young children with

> > cranial abnormalities. I was not lucky enough for my parents to

> > treat me at a younger age so I'm seeking alternative surgical

> > treaments now or in the near future. I was wondering if anyone

> > could provide me with some informational and answer some of my

> > questions, I've tried medical message boards and WebMD already

to

> no

> > avail.

> >

> > Thanks in advance.