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#196331 - 05/01/18 10:02 PM Oronasal fistula  
Joined: May 2018
Posts: 6
cate1968 Offline
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cate1968  Offline
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Joined: May 2018
Posts: 6

​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.


Cathleen
2016 Diagnosed w/ a malignant adenoid cystic carcinoma. Maxillectomy and reconstructive radial forearm flap in 2016.
#196334 - 05/02/18 01:48 AM Re: Hello All! Let me introduce myself [Re: cate1968]  
Joined: Jun 2007
Posts: 9,990
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,990
PA
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. The 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!!!


Christine
SCC 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 smile
#196342 - 05/02/18 08:36 PM Re: Hello All! Let me introduce myself [Re: ChristineB]  
Joined: May 2018
Posts: 6
cate1968 Offline
Member
cate1968  Offline
Member

Joined: May 2018
Posts: 6
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.


Cathleen
2016 Diagnosed w/ a malignant adenoid cystic carcinoma. Maxillectomy and reconstructive radial forearm flap in 2016.
#196347 - 05/04/18 11:00 PM Re: Hello All! Let me introduce myself [Re: cate1968]  
Joined: Jun 2015
Posts: 12
Neumann Offline
Member
Neumann  Offline
Member

Joined: Jun 2015
Posts: 12
Il
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


Husband diagnosed 2/13 lower lip scc in situ 2 surgeries never scanned. 8 months later diagnosed soft palate scc stage 4A, tonsil and nodes involved. Hpv positive. Told by ENT small t1 tumor brought in to surgery for tumor removal and neck disection. Aborded surgery. Stage 4!! Finished rads and chemo Jan 2014. Grade 4 ORN of the maxilla, 30 HBOT , sinus surgery , maxilla surgery, buccal flap 4/2015. Doing good. 9-2015 red patch on soft palate , waiting to see.
#196437 - 05/14/18 12:30 AM Re: Hello All! Let me introduce myself [Re: Neumann]  
Joined: May 2018
Posts: 6
cate1968 Offline
Member
cate1968  Offline
Member

Joined: May 2018
Posts: 6
Thank you so much Charm. How is your husband doing?


Cathleen
2016 Diagnosed w/ a malignant adenoid cystic carcinoma. Maxillectomy and reconstructive radial forearm flap in 2016.

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