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| | Joined: Apr 2018 Posts: 8 Member | OP  Member
Joined: Apr 2018 Posts: 8 | Hello - my name is Cathleen. I'm a 49 year old female and I was diagnosed with a malignant Adenoid cystic carcinoma on my hard palate in July of 2016. I underwent surgery to remove the tumor and reconstruction surgery (maxillectomy with reconstruction radial free forearm
tissue transfer flap.) The surgery and recovery went well. Some infections to my forearm flap but it cleared up. A month later I started RT and that nearly killed me. Along the way it was determined that I had an oronasal fistula. An
opening between my hard palate and nasal cavity where the tissue did not heal properly. The result of this fistula has been food and liquid entering my nasal cavity and creating a constant state of infection, chronic sinusitis, daily
liquid leakage from my nose, headaches, and decrease in my hearing.
I have lived with this since my initial surgery in 2016. Later in 2017 my surgeons attempted to close the
fistula with surgery but that failed. I have spent months seeing a prothodontist who created an oral opturator to block and eventually plug the fistula but to date none of these attempts has stopped the infections, leakage, etc.
I'm wondering how many else there are out with similar issues. And what if any comfort / solutions
have you found to ease these issues. I'm currently considering a 3rd surgery called a buccal fat pad reconstruction.
I'm happy to hear any and all comments / suggestions.
Thank you.
ACC 7/16/16 Hard Palate Stag I, age 47
Surg 11/17/16 maxillectomy & RFFF reconst
30 IMRT end 4/31/17
-85 lbs in 4 mo, no caregvr
6/17 surg fistula repair attempt failed
9/17-5/18 Oral opturator fittings to block / cover fistula failed
6/18 Buccal Fat Pad reconst failed
Clear PET & MRI 11/17 & 6/18
| | | | | 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, Cate! Im sorry to read about everything you have been thru!
We have had members who had ACC. Im not sure off the top of my head which members had ACC instead of the more common SCC. We just recently had a new member that was just diagnosed join our group.
There have been many discussion posts about obturators. If you do a search by typing obturator in the search box towards the upper right of any page you will find many posts to read.
Hope that helps you!
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: Apr 2018 Posts: 8 Member | | OP Member
Joined: Apr 2018 Posts: 8 |
ACC 7/16/16 Hard Palate Stag I, age 47
Surg 11/17/16 maxillectomy & RFFF reconst
30 IMRT end 4/31/17
-85 lbs in 4 mo, no caregvr
6/17 surg fistula repair attempt failed
9/17-5/18 Oral opturator fittings to block / cover fistula failed
6/18 Buccal Fat Pad reconst failed
Clear PET & MRI 11/17 & 6/18
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