Surgery at the age 30 ???

[Jerry]

I' a 30 year old male and have a cleft palate condition. My
face and lip is not distorted at all. No one knows of my
condition, untill I do not start talking. When I talk, everyone
thinks that my speach is either pulled tooth, or my foreign
accent. Because of that it is hard for me to meet new people, and
now at age 30, I can see that this condotion effects my work
relationships in my engineering field. Once, I was not promoted
to a chief engineering position, because of my "limited
verbal skills". Not to mention, as we all, had a horrible
childhood. Unfortunately, I grew up in a poor european country,
where medical treatments/surgeries for this conditions were not a
great success, and my parents would not take chances in making
things worse. Now, at age 30, I live in Boston, MA, have a very
good profession, and still am hunted every day by the fact that I
speak "funny". Can someone please help me with any info
regarding my condition - mainly surgeries at my age? How
successful are they, and how would the recovery effect my
profesional life? Also, does anyone know if my health insure
would cover any of this - either Pilgrim, Tufts, or Harvard?
Please help. Tired of it all... Jerry

[Anonymous]

Jerry-I definitely think you should get your palate repaired!!
My son hasn't even had his first surgery yet, but I would think
your life will change immensely once you get it done. You may
find that ALL of your speech problems will not be perfected, but
wouldn't some improvement be better than none? Our insurance will
cover our baby since he will be unable to eat or speak properly
without surgical intervention. I would think it would be worth a
phone call to your insurance company(s). They will easily be able
to help you. If not, look into getting some help from the
government or something. If you call a hospital and ask for a
social worker, they should be able to put you in contact with the
proper people. The Shriners will help families who have no
insurance, and I wouldn't be surprised if they would be able to
help you too! Good luck and please write back and let us know
what you find out.

[laurie]

i am a 27 year old female with double trouble that is mostly
repaired. i would definitely investigate surgery...even my
imperfect insurance at a non-profit organization covers
reconstruction of conditions that affect functioning of the body,
although nothing purely cosmetic. Plus, if i am gathering
correctly, you have an unrepaired palate and that might affect
your breathing, eating and sleeping. as far as recovery is
concerned, it shouldn't be so bad. the doctor i saw 2 years ago
projected a 2 week absence from work for a jaw realignment and
some other minor work. after the 1st bone graft to my palate from
my hip, the worst pain was definitely the hip. i don't recommend
that. the 2nd time (the first didn't take) they took it from my
skull and as gross as that sounds it was much easier. things have
really advanced. even though surgery is not enjoyable, i am
grateful for the repairs i've had done. i wish you luck. we all
deserve a good quality of life and it is well within your reach.

[Anonymous]

Hi Jerry- As somebody who was born with a bi-lateral cleft lip
and palate, who had still many surgeries as an adult (I'm 31), I
think getting your palate repaired will be the best thing for
you.



Depending on your situation, you may need only to have the
roof of your mouth closed, and not need a bone graft operation.
If you do need to have a bone graft operation as well, like
Laurie said, your hip will hurt more than your mouth. I had it
done about 3 years ago, and the pain felt like it does when you
work out way too much. Rest of course helps. After your mouth
heals, you may need speech therapy to learn to speak without
compensating for what was not there before.



Your insurance will probably pay most, if not all of the
costs involved, as this is reconstructive and not
"cosmetic" or elective surgery. You may run into
problems with the "pre-existing condition" clauses in
your insurance policy. Argue if you have to get them to pay when
you need the surgery.



As I am also debating whether or when I should have the
second bone grafting surgery this year or next year, I would not
mind lending moral support if you need. e-mail amgula@sprynet.com
Good Luck to you.

[KLB]

Hi Jerry, GO FOR IT!!!!!! I am 33 and was born with a rare
condition called arhinia, total absence of the nose and other
anomalies, imncluding a midline cleft. You can check out my
Arhinia page at <a
href="http://www.geocities.com/HotSprings/Spa/5935/">http://www.geocities.com/HotSprings/Spa/5935/</a>
I had a successful pharyngeal flap revision back in Sept. 1997. I
was told that it might not work. Well I did it and it worked.
There is much improvement in my speech. I just had surgery three
weeks ago to open up my nostrils more and that imprived my
speech. I am still not done with my reconstruction (ALMOST THO).
I have to still go thru a reconstruction of my columella.
Insurance has covered all my surgeries.



Please feel free to email me at kristib@qni.com if you have
any questions.



Kristi

[Anonymous]

I have a wonderful Doctor located in Boston, MA. I don't have
any info. about surgeries at age 30, but it would definitely be
worth it to give it a shot! His name is Dr. Ivo Janecka at
Children's Hospital (he performs surgery on adults, as well). His
phone # is (617) 355-8509. He is an excellent doctor...He has
done multiple surgeries for me. (I am 25 years old.)

[Kathy]

Yes, I am 43 and am going to get the last of my surgeries, I can't wait until this happens. But I have had numerous surgeries thus far, and can't wait until its all over. Let me know what you do.. Good luck...

[gc0447]

Hello everybody. My name is Georgette Couvall (Dr. Salyer's patient: http://www.craniofacial.net & http://www.worldcf.org). How is everyone doing? Here are my Personal Story & Before and After Picture links:

http://www.craniofacial.net/hypertelorism.htm (Anopthalmus with Frontonasal Dysplasia)
http://www.craniofacial.net/testimonials.htm (Georgette, Patient)
http://www.worldcf.org/support_groups.cfm (Craniofacial anomalies)
http://extratv.warnerbros.com/cmp/spotl ... 06_09a.htm
http://www.cleftadvocate.org/ff0104Georgette.html
http://www.cleftline.org/som/0507/som0507couval.htm
http://www.apert.org/couvall/index.html

Dr. Salyer is my Craniofacial/Cleft Surgeon. I love him like I love my own family. He has not only made a medical miracle for me, but has done the same for many other Craniofacial and Cleft patients from all over the world. He is the best. Dr. Salyer is the director of the International Craniofacial Institute (http://www.craniofacial.net) & founder of the World Craniofacial Foundation (http://www.worldcf.org) in Dallas, Texas. Here are the links that show Before & After Pictures of Dr. Salyer's patients with Cleft Deformities in which he has operated on:

http://www.craniofacial.net/cleft_lip_pictures.htm
http://www.worldcf.org/genetic_cleft.cfm
http://www.worldcf.org/facial.cfm
http://www.worldcf.org/unilateral_clefts.cfm
http://www.worldcf.org/bilateral_clefts.cfm

Please feel free to email me at georgettecouvall@hotmail.com if you would like more information. I wish the best for all of you.

Sincerely,

Georgette Couvall

[hatchedk]

My aunt was born with cleft lip and palate, and although it was repaired 50 years ago, but she was never happy with the cosmetic results. She just last week, at age 51, had reconstructive surgery to correct what she felt needed to be fixed. And insurance covered it all.
So I would imagine if a cosmetic problem could be covered by insurance, a speech problem would definitely be covered. I would find a good cleft team in your area and have them contact your insurance company stating the medical need for this procedure.
I'm not from that area, I have no Dr's recommendations...but good luck!

[Jeff Alterman]

Jerry:

You can certainly have cleft palate surgery at your age and if properly performed plus with some practice on your speech, the tonal quality of your speech should improve markedly. If I were you, I would go for the surgery

Jeff Alterman at alterman@bestweb.net

[Julie Lauzon]

Hi Jerry my name is Julie and my son Nicholas (3) was born with a ucl&p. I see you live in Massachusetts. I checked with my sons doctor and she does adult cleft lip/palate repair and takes all insurances. She is located at U-MASS in Worcester. If you would like the details please feel free to contact me at

jlauzon@unumprovident.com or smiley52270@yahoo.com

I hope to hear from you.

Take care
Julie Lauzon
Auburn, Massachusetts
mom to Nicholas 3yrs ucl&p