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RE: BAHA surgery

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hi kim,

my daughter erika had the BAHA implanted June of last year. It was a long

ordeal but it is now worth it.

here is howit went for us.

June 10, 2003, she was implanted. the packing came off several months

later, appeared to heal o.k., then in Novmeber, they took the skin cover off,

put

the abundment on and waited efor this to heal. the skin kept growing over

the screw, they had to cut it down 2 seperate times in their office, and

finally in January had to go back to the OR to cut the skin down and do a skin

graft (from her stomach). it fnally healed and we hooked her up in February,

2004.

my suggestion is go back to the O.R. to pop through. they tried with erika

in the office with a local and she went through hell.

we also have the high powered adapter, the Cordell, which has a seperate

processor that she has to wear on a belt or a case. i wasnt prepared for this.

they do have less powerful ones that are self contained to the piece on teh

head, but it was not strong enough for erika.

you heave to really keep it clean especially the first 6 mos.

erika still cries when we clean it but i think she has bad memories from the

healing process with the graft.

i hope this doesnt sound terrible, b/c it all worked out in the long run,

they just did not prepare us for all of this.

good luck

cathie, mom to erika 9 CHARGEr

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kim, when i said pop through, it means un cover it. what happens is the

screw is implanted, then covered with skin so it can heal to the bone for

4-6months. then the uncover the screw, exsume it as debbie called it. b/c it

is

inside the scalp, in the bone healing, but covered with skin, they cut away

that skin and attache the abundment.

erika also had 2 screws placed, in case one didnt take or doesnt work, i

think debbie said michael did to. eirkas dr said they usually put 2 in for

that

reason. the first one of erikas works.

its a long process but still i think much simplier than a cochlear implant

and less invasive.

feel free to ask any more quesitons. i wish i had known more about it

before we did it, to prepare us more.

cathie, erikas mom

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Hi Cathie, Thank you for sharing your info. I do have one question what is the

pop through? Thanks Kim A

From: To: CHARGE@...: Tue, 5 Oct

2004 13:25:52 EDTSubject: Re: BAHA surgeryhi kim,my daughter erika had

the BAHA implanted June of last year. It was a long ordeal but it is now worth

it. here is howit went for us.June 10, 2003, she was implanted. the packing

came off several months later, appeared to heal o.k., then in Novmeber, they

took the skin cover off, put the abundment on and waited efor this to heal.

the skin kept growing over the screw, they had to cut it down 2 seperate times

in their office, and finally in January had to go back to the OR to cut the

skin down and do a skin graft (from her stomach). it fnally healed and we

hooked her up in February, 2004.my suggestion is go back to the O.R. to pop

through. they tried with erika in the office with a local and she went through

hell. we also have the high powered adapter, the Cordell, which has a seperate

processor that she has to wear on a belt or a case. i wasnt prepared for this.

they do have less powerful ones that are self contained to the piece on teh

head, but it was not strong enough for erika.you heave to really keep it clean

especially the first 6 mos.erika still cries when we clean it but i think she

has bad memories from the healing process with the graft.i hope this doesnt

sound terrible, b/c it all worked out in the long run, they just did not

prepare us for all of this.good luckcathie, mom to erika 9 CHARGEr[Non-text

portions of this message have been removed]Membership of this email support

groups does not constitute membership in the CHARGE Syndrome Foundation.For

information about the CHARGE Syndrome Foundation or to become a member (and get

the newsletter)please contact marion@... or visit the CHARGE

Syndrome Foundation web page at http://www.chargesyndrome.org7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information

will be available at our websitewww.chargesyndrome.org or by calling

1-. In Canada, you may contact CHARGE Syndrome Canada at

1- (families), visit www.chargesyndrome.ca, or email

info@.... Thank you!

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Cathie,

Thanks for the info, Kennedy goes next June for part one of the surgery....

I'm nervous and I'm sure it won't be easy with the healing but hopefully with me

being off work all summer we can do it together.

,

Mom to Kennedy 6 yr old with CHARGE, 15, 13, and wife to Graeme

New Brunswick, CANADA

Visit the Weir family at: http://ca.geocities.com/weirfamilyrogers

lisaweir@...

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Hi Kim,

My son had the BAHA surgery last November which was the initial implant, it

healed for 4 mths and was exsumed (sp?) in March (the screw was). The

surgeon did 2 implants and thank goodness because only 1 took. The surgery

wasn't bad. The night after the surgery my son could actually hear if you

talked into his right side (where he was implanted) without the device

hooked up. It has been very successful and he is doing FANTASTIC with it.

It was worth all the aggrevation of surgery.

He said it hurt a little bit but that went away with time as the site

healed. My son doesn't tolerate pain as well as he use to. He is glad to

have gotten the surgery, he said so himself.

Debbie Matasker mom to 7 w/CHARGE, 9, andra 10

BAHA surgery

My son will be having the BAHA surgery on Oct 7th (hopefully he just started

getting a cough last night) Has anyone had this done? Please let me know how

the surgery was for your child.Was your child in alot of pain? Did you have

2 surgery or 1 whatever info you have or what to share. Thanks Kim A(

and Blakes mom )

_______________________________________________

No banners. No pop-ups. No kidding.

Make My Way your home on the Web - http://www.myway.com

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Thank you all for your info.Now I'm alittle less worried about the pain,but

alittle more worried about the fact that our doctor is only doing 1 surgery .I

will be asking him if he is putting in two screws-Thanks Kim A - 8 and

Blake's 5 (CHARGEr) mom

From: Bill Matasker To:

CHARGE@...: Tue, 05 Oct 2004 15:40:29 -0400Subject: RE:

BAHA surgeryHi Kim,My son had the BAHA surgery last November which was the

initial implant, ithealed for 4 mths and was exsumed (sp?) in March (the screw

was). Thesurgeon did 2 implants and thank goodness because only 1 took. The

surgerywasn't bad. The night after the surgery my son could actually hear if

youtalked into his right side (where he was implanted) without the devicehooked

up. It has been very successful and he is doing FANTASTIC with it.It was worth

all the aggrevation of surgery.He said it hurt a little bit but that went away

with time as the sitehealed. My son doesn't tolerate pain as well as he use to.

He is glad tohave gotten the surgery, he said so himself.Debbie Matasker mom to

7 w/CHARGE, 9, andra 10-----Original Message-----From: Kim

Sent: Tuesday, October 05, 2004

11:05 AMTo: CHARGE@...: BAHA surgeryMy son will be

having the BAHA surgery on Oct 7th (hopefully he just startedgetting a cough

last night) Has anyone had this done? Please let me know howthe surgery was for

your child.Was your child in alot of pain? Did you have2 surgery or 1 whatever

info you have or what to share. Thanks Kim A(and Blakes mom

)_______________________________________________No banners. No pop-ups. No

kidding.Make My Way your home on the Web - http://www.myway.com[Non-text

portions of this message have been removed]Membership of this email support

groups does not constitute membership inthe CHARGE Syndrome Foundation.For

information about the CHARGE SyndromeFoundation or to become a member (and get

the newsletter)please contact marion@... or visitthe CHARGE

Syndrome Foundation web pageat http://www.chargesyndrome.org7th

InternationalCHARGE Syndrome Conference, Miami Beach, Florida, July 22-24,

2005.Information will be available at our websitewww.chargesyndrome.org or by

calling 1-. In Canada, you maycontact CHARGE Syndrome Canada at

1- (families), visitwww.chargesyndrome.ca, or email

info@.... Thank you!

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