Posted By: cate1968 Oronasal fistula - 05-01-2018 10:02 PM

​Hello - my name is Cathleen. I have had an open fistula where my hard palate meets my soft palate for over a hear now. I can't drink liquid without it not coming out my nose. Food and liquid has caused a chronic infection in my nasal cavity and sinus plus some hearing loss. I have to irrigate my sinuses 4 to 6 times a day. My nose is constantly running.

I've had one failed surgery and months of trying to get the right fit on an oral opturator. I'm now at a point where I'm considering another surgery.
I'm wondering how many else there are out with similar issues and or experiences with an oral fistula repair? I'd love to hear about your experiences.

The 3rd surgery I'm considering is called a buccal fat pad reconstruction. Anyone familiar with that?

I'm happy to hear any and all comments / suggestions.

Thank you.
Posted By: ChristineB Re: Hello All! Let me introduce myself - 05-02-2018 01:48 AM
Its very common for patients to have problems healing after going thru rads. Even areas a couple inches away from the radiation zone can have compromised healing capabilities. Ive been thru something similar with having a 6" open "tunnel" along the side of my face to behind my ear. This "tunnel" was about as big around as an uncooked piece of spaghetti. After weeks of going to a wound care specialist group and trying a great many different treatments without success I was down to my last option to get the area to heal. The "tunnel" kept getting infections. My doc had me get a picc line then start taking strong antibiotics 3x a day. The antibiotics would get delivered to my house from the hospital frozen and stay refrigerated. I also had to do hyperbaric oxyegn treatments (HBO). HBO is where a patient is in a glass cylinder breathing pressurized oxygen. My HBO treatments were almost 2 hours in the tank 5 days a week. It makes for a long day! The patient gets their blood pressure, temp, pulse, etc checked by the HBO tech every day prior to and immediately after each dive. Once a week the HBO doctor would do a check up to make sure everything was going smoothly for the HBO patient. Finally the tunnel began to show improvement and 8 long months later it was permanently closed. Of course, this is just the ordeal I went thru where others in similar situations may tell a completely different story.

When I went to the wound care specialists, I was impressed at all the different things they had available. The wound care team worked closely with an infectious disease doctor who was monitoring the infections I kept getting in the "tunnel"

Another idea would be if you havent already been treated at a comprehensive cancer center (CCC) to make an appointment with an ENT there. The CCCs are usually the best place to go for complex cases as they have the most experience with these types of things. CCCs use a team based approach, Im not sure if that would be necessary for your situation. Regardless, going to a CCC is definitely worth checking out. If you havent already gotten a second opinion I would advise to do so prior to having any further surgeries.

I hope you find these suggestions helpful. Best wishes!!!
Posted By: cate1968 Re: Hello All! Let me introduce myself - 05-02-2018 08:36 PM
Hi Christine - That is so intense. I'm sorry you had to suffer like that. I am being treated at a CCC in Oregon. My doctors there include otolarygologists and ENTs. I get the impression they're out of ideas for my fistula. I'm seeing a new surgeon next week so fingers crossed!!

Thank you.
Posted By: Neumann Re: Hello All! Let me introduce myself - 05-04-2018 11:00 PM
Hi Cathleen,

My husband had the buccal flap for a hole (fistula) due to osteoradionecrosis of the maxilla (Upper Jaw) . The buccal flap came from the inside of his cheek. It worked and 6 weeks after surgery the hole closed. But before the surgery he did do 30 HBO Treatments.

Best to You,
Charm
Posted By: cate1968 Re: Hello All! Let me introduce myself - 05-14-2018 12:30 AM
Thank you so much Charm. How is your husband doing?
Posted By: Neumann Re: Hello All! Let me introduce myself - 06-02-2018 01:30 PM
HI Cate,

My husband has to be the strongest willed person I have ever known. He has suffered 2 heart attacks (3 stents and lots of meds) since cancer and this Jan of 2019 will be his 5 year mark to be cancer free. He just had another tooth pulled and after 3 weeks there is still a hole but we feel it will close. The tooth was so loose it had to come out and the oral surgeon didn't seem at all concerned about the healing so we are going to see what happens. This tooth was not in anyway connected to his sinus so he didn't have to deal with the water and liquids coming out his nose like last time. Hope you are well and remember One Day at a Time. Holes in the body are meant to close!
Posted By: cate1968 Re: Hello All! Let me introduce myself - 06-11-2018 09:56 PM
Thanks for your reply! I had the Buccal Fat flap procedure 2.5 weeks ago and it failed. My hole is still open and now my speech is negatively effected. I can not pronounce a lot of sounds. You're husband sounds like superman! Good for both of you! Can I ask where you're located and who did the Buccal fat procedure for you?
Posted By: Vicky1 Re: Hello All! Let me introduce myself - 06-17-2018 02:26 AM
Hi, Cate!

I know you didn't ask, but my dad just had a mandiblectomy at Massachusetts Eye and Ear Infirmary in Boston. one doctor removed his cancer, and another doctor reconstructed his face using tissue and bone from his leg. I would strongly recommend this hospital to anyone who needs surgery on their head or neck. They were incredible.
Posted By: cate1968 Re: Hello All! Let me introduce myself - 07-03-2018 08:58 PM
Thank you so very much!
© Oral Cancer Support - Survivor / Patient Forum