HI everyone,
I'm new to this forum. There's so much info here. Wow. I hope someone can share his/her experience with me on this.

I was diagnosed with MEC following the birth of my baby. The 1st mandibular reconstruction w fibular flap failed (doctors tried to salvage it but it still didn't work) and an infection to the wound had set in on the 4th post-op day so a 2nd free fibular flap wasn't performed then. Having 3 surgeries within 4 days was no fun.

I'm not looking forward to more surgeries but without reconstruction I won't be able to move forward with oral rehab. Living this past year without teeth and not being able to chew (liquids only) are but some adjustments amongst others while caring for 2 young children.

I only have 1 fibular left and want to make it count. I was also told secondary mandibular reconstruction w free fibular flap would be more difficult with scarring and limited arteries... Does anyone have any recommendations who and where there are good, experienced surgeons for the free fibular flap? In California? Elsewhere in the US? Anyone went thru' UCSF? Stanford?

Many thanks

Welcome to OCF. Im sorry to read your story. Having to go thru this isnt easy. While trying to care for young children, its even more difficult.

My diagnosis was 6/09 and surgery was 8/09 for SCC of the jawbone. Ive had my jaw removed and a jaw made of steel put in its place. My first surgery was not successful and a second one was done a few days after. This was done in Lehigh Valley Hospital, Allentown PA. My surgery was done by my ENT along with his assistant and 2 plastic surgeons. There arent many who have had this operation. Im hoping you will hear from a few more people from around the country.

I am right there with you regarding the lack of teeth. I had mine removed in order to make dentures and then I got OC again and had to put that off. I can eat quite alot for someone who is without teeth. I eat jello, pudding, yogurt, soup, baked and mashed sweet potatoes and regular potatoes, cooked carrots, mashed baked beans, hot fudge sundaes, milkshakes, and mashed bananas. Do you have a feeding tube? Im interested in hearing if you are able to take in anything else than what I listed.

Best of luck to you.

Hi, Salk,

Wow, you have been dealing with a very tough and challenging problem. My husband recently had jaw reconstruction with a fibular flap (Nov 09). Osteoradionecrosis (ORN) was the diagnosis for his collapsed jaw. His bite was so far out of alignment that he was able to eat very little by mouth. While the surgery was successful, he had to have the skin part of the flap replaced with a larger island of skin from his torso. This was because the skin had shrunk and was pulling away from the jaw and exposing the plate. There wasn't enough bulk to the original skin flap to cover the area. That procedure was done on April 5th.

We are so happy with his results. The contour of his face has been restored. Prior to that, his face was concave on the affected side. For all of his reconstruction surgeries, he was treated at the Hospital of the University of Pennsylvania by Dr. David Low. He is known there as "the king of flaps". Wonderful man.

My husband is eating more and more every day. He did lose some more teeth in Nov., however he does have enough teeth left for chewing. I wish you all the best as move forward with your search.

Let us know what you decide to do.

Anita

Thanks, Christine.
I'll have to find out about that steel jaw.

I think I can eat the foods you mentioned as long as they are mashed up pretty good/blended (no chunky bits/pieces) and with sufficient liquid. I try to cut down on sugar so don't eat much jellos, puddings, sundaes.

My feeding tube was removed sometime after hospital discharge.

Really appreciate you writing. I see your name on the forum a lot.

Do you think I should repost my questions under "treatment and diagnosis" instead to get more views/replies?

:)Salk

Thanks, Christine.
Do you have the name of the procedure for the steel jaw? Doctor's names?

I wrote something earlier - I don't know if you got it?

Thanks,
Salk

Thanks so much for sharing, Anita.
The doctor mentioned another skin graft but I'm not sure if it's the same case as your husband. I'll have to find out.

Salk

Hi Anita,
How many fibula flaps have Dr Low done? How long has he been doing it?

Thanks,
Salk