What It's Like to Need Prosthetic Ears 12/11/09

By: Cindy Valavanis
A burn survivor of 38 years



About three weeks before my twelfth birthday at 6 pm I decided to melt some butter in a small metal measuring cup on the electric stove for popcorn the my 7 and one half year old brother and I had made. Despite being warned by my sister (then 9 years old) that "Mommy doesn't want us using the stove when she's not home" I did it anyway. The result was having my hair towel (just washed hair) catch fire and set my bathrobe sleeve a blaze as well. Back in 1971 the material was a quilted poly cotton fiber that was highly flammable and flame retardant garments were only available to size 6x not for pre-teens like myself. I guess 25 cents per garment was too much money to the manufacturers. I suffered 33 1/3% deep 3rd and 4th degree burns which needed 39 reconstructive surgeries to correct. We went to my neighbor who took us to my other neighbor that instructed sister to get blanket to wrap me in and took me to Hempstead General Hospital where there was no burn unit b/c she didn't know how to get to Nassau University Medical Center (aka Meadowbrook Hospital). I had to take a shower to get as much fabric off me as possible and was rushed by ambulance to the burn unit.


After being in the burn unit critical the first two months (having to have had round the clock private nurses), the last month I came home for Christmas. No one had ever told me that my ears were so charred they could not be saved. When I looked in the mirror and discovered this it was extremely upsetting to say the least. My mom made it out to be like no biggie and so did the dr. I have had some surgery to reconstruct it but I still am unable to wear earrings like most women and some men do.

I heard about Bob Barron thru a TV show I believe and how he helped children with microfasia by reconstructing an ear for them. He also did a lot of work on the police officer, Jason, who was severely and horrifically burned on a car chase in Phoenix so I decided to try him myself.

My first visit was in Dec. of 2005 where he spoke to my brother and I and answered any questions we had. About a month later, I decided to go ahead with the procedure so I went back in April of 06 to have molds made of my ears. I don't remember all the dates but I know the fitting is usually two visits but Mr. Barron was able to combine it into one since I was in NY and he's in VA not too far from my brother. The other reason is I couldn't keep asking my brother to take time off work to take me. The prosthesis fit nicely when he put them on me but when I started to do them I had difficulty. The graft my dr. used by my ears has a lot of hair on it making it difficult for the prosthesis to stay on and on occasion they'd fall off. One may say so that's no big deal but it is b/c they cost $15,000 and the price goes up every January.



In conclusion, I'm not certain I'd recommend having the prosthesis made because of the hassle of having to remember to remove them every night b4 bed, still not being able to wear earrings, and having to make sure that if I fall asleep watching TV for example, I don't turn over and put pressure on them. The other caution is over time, they will need to be replaced b/c they only last about 3 yrs. Or so. I spoke to a man Mr. Barron recommended I call who said that he needed to be refit b/c in some men endure changes in their ear structure or something along those lines making the prosthetic fit incorrectly.

If anyone wants to see my pictures wearing the prosthetics, they are in the book Mr. Barron has in his office along with Jason's and many other people he's helped over the past 35 + years. chance at life and it's our job to make the best of it. It's a new year, it's a new decade it's time to make some changes and create some waves in this burn community of ours. This is our world and it is our time to improve it. We need to embrace our fellow burn survivors and educate the community of non-burned individuals.

BSTTW is such a community. A community created for burn survivors to thrive. We place such value on numbers and statistics and prevention and wound care and the basic needs of the survivors. The needs of those victim's that have yet to become survivors also needs to be addressed. We also need to place a need on our spiritual wellness, our emotional wellness. This is where I hope to be of assistance.

Each month I hope to give you some information that will aid you. If you are newly burned I will share some of what could and will occur. If you have been burned for a while I hope to give you some things to think about and give you access to a community where you can be of help to other's while you continue to heal.

Through service we heal, we grow and that we become strong. I need feedback from the community, what you like what you don't like. What you want to see, what you feel you need, where we can be of more assistance and how we can make a larger impact on the burn community. What would you like the future to look like for your burn community?

Let's make 2010 an amazing year, a year of difference a year of change a year of surprises and let's keep our resolutions.