| | Joined: Jan 2019 Posts: 3 Member | OP  Member
Joined: Jan 2019 Posts: 3 | Hi, I am facing reconstruction of mandible for benign but aggressive tumor (ameloblastoma), and my surgeon also wants to use fibula but I am desperately hoping he can use scapula, as I am also an avid skier, hiker, etc. Am terrified of results using fibula. Any info anyone has to share is much appreciated. Thanks! | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Fibscap,
I had a fibula free flap for osteoradionecris about two years ago. I chose the fibula, although a scapula was offered, but it’s a little thicker, and I wasn’t having a lot of tissue transferred. I have some difficulty walking from the weight loss 10 years ago (130 lbs), and neuropathy, but I didn’t want to add any arm paralysis from radiation I already had (left arm is totally parlayzed now), so I chose the fibula, which surgery took 8 hours.
I also needed vascularity and nerve in the jaw as prior surgeries took them out, so they had to cut into my chest to take a cardiac artery and vein.
Like others, I was out of it for 2 or 3 days. I went from post op to the step down unit, which was very good care. About the 3rd 4th day they took out the trache and put in the speaking valve, which was so much better than using the writing board or hand signals. I could never use the iSpeak app on my phone as it was too small and blurry after surgery.
I was in step down for 7days, but chose to go to a rehab facility than go home. I was there about two months. I had the trache fistula for a
Month before it closed, so I had to cover the fistula before I spoke.
I was in nursing rehab 2 or 3 months, whatever
My insurance covered. The donor site on my leg took 5 months to heal, after they decided to take a graft from groin, did the leg finally start to heal.(btw, I have diabetes so the leg and other wounds o not heal properly).
I hope this helps!
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF! Your illness as you know, is rare. Im not sure how much help we can be to you. Our members are oral cancer (OC) patients/survivors and caregivers. We are not medical professionals and rarely know much about other less serious illnesses unless they are directly related to OC. As far as the surgery you are facing, it may be very different than what OC patients go thru. What works for a cancer patient could be drastically different than whats needed for someone without cancer. Only medical professionals would know about this sort of thing. I know this is not something patients without cancer can see but you really are very fortunate your tumor is not cancerous!!! Ameloblastoma info
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jan 2019 Posts: 3 Member | | OP Member
Joined: Jan 2019 Posts: 3 | Thank you Paul, and best of luck to you!! | | | | | Joined: Jan 2019 Posts: 3 Member | | OP Member
Joined: Jan 2019 Posts: 3 | Thank you Christine, yes, I can see I am very fortunate, given that I have a tumor in the first place. You are providing a great service with this forum, thanks so much! | | | | | Joined: Aug 2010 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2010 Posts: 72 | I know nothing of the scapula flap. However, my hubby had the fibular free flap over 8 years ago. He still walks with a slight limp and has some balance issues on wet or icy surfaces. He walks two miles each way to work daily, but it takes him at least 45 minutes. I doubt that even if he could ski before he would be able to do so now. It stinks that you're going through this. Best wishes
Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV
Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments.
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