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#196473 - 05/22/18 04:43 PM Upcoming Maxillectomy and Partial Palate Removal  
Joined: Feb 2013
Posts: 49
Teacher Karen Offline
Contributing Member (25+ posts)
Teacher Karen  Offline
Contributing Member (25+ posts)

Joined: Feb 2013
Posts: 49
California
Good Morning Friends!
I have decided to post in this new forum as my previous post was under "Possible Recurrence" and now the recurrence has been confirmed. My surgery is scheduled for June 19th and I would like to find out more about speech and eating issues following a partial palatectomy. I currently have a prosthesis which replaces the right upper jaw removed in previous surgeries. The prosthodontist will use this temporarily and add an obturator to fill in the hole left by the removal of the palate. I currently lead a very active life and of course, would love to continue doing so in spite of this upcoming surgery. My questions are:
1) How was the recovery process for those of you have have gone through this? Were you able to leave the obturator in so you could speak right after surgery or were there days or weeks when it had to be left out for healing purposes?
2) I will have a nasogastric feeding tube at first. How long did you have to leave that in place?
3) Have any of you used healthier versions of the Ensure/Boost protein drinks in your feeding tubes?
4) I have severe xerostomia from past radiation and parotidectomy. If I'm not able to drink by mouth initially, will I just have to use small sponges to wet my mouth?

I will address all those questions with the doctor in my pre-op visit, but I would love to hear any of your first hand experiences and words of wisdom before I have this latest surgery.
Thank you all for your input!
Love,
Karen


Teacher Karen
DX: SCC of right maxillary alveolar ridge, 9/2010.
Surgery 11/2010, removal of 4 teeth and gum.
Surgery 11/2012, removal of 3 teeth and gum.
IMRT 1/2013-2/2013
Surgery 1/2015 right hard palate-maxillary alveolar ridge-retromolar trigone SCC resection w/clean margins; removal of 1 tooth and gum.
Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection.
Cetuximab based chemoradiation 64.8 Gy to resection bed.
#196477 - 05/22/18 08:03 PM Re: Upcoming Maxillectomy and Partial Palate Removal [Re: Teacher Karen]  
Joined: Oct 2012
Posts: 957
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 957
Toronto, Canada
Karen,

I can’t speak to your first two questions, but I do know a bit about 3 & 4.

My husband was Ensure 2.0 and later Nutrin 2.0. The latter has 495 calories and was prescribed by the dietitian. Is that what you were thinking about when you said “healthier?” In fact, I also added ice cream and sometimes fruit to the supplement to boost the calorie intake. I used a Vitamix.

You will have to wet your lips as well as inside your cheeks with sponges as well. John also rinse his mouth with water but he wasn’t allowed to swallow it because he had silent aspiration. Using a lip balm also helped.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#196493 - 05/24/18 02:06 AM Re: Upcoming Maxillectomy and Partial Palate Removal [Re: Teacher Karen]  
Joined: Jun 2007
Posts: 10,016
ChristineB Online content
Administrator, Director of Patient Support Services
ChristineB  Online Content
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,016
PA
The nasal feeding tubes are very temporary. They are used more for patients who require a less permanent amount of assistance. Ive seen patients use these for anywhere from 3 weeks-2 months. Removing the tube is so much easier than removing the PEG or J/G kind of feeding tube.

Feeding tubes usually come with liquid prescription formula. This is supplied by a medical supply company with a prescription from your doc. These formulas are designed to work with feeding tubes. Other formulas or blended foods may not work with nasal feeding tubes. They can break down or clog the tube. Ask your doc for their input prior to trying anything that wasnt prescribed.

Looks like you will be a very informed and pro-active patient. Im glad to see you are trying to learn everything that will make the upcoming treatments as easy as possible


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
#196550 - 06/04/18 05:12 PM Re: Upcoming Maxillectomy and Partial Palate Removal [Re: Teacher Karen]  
Joined: Feb 2013
Posts: 49
Teacher Karen Offline
Contributing Member (25+ posts)
Teacher Karen  Offline
Contributing Member (25+ posts)

Joined: Feb 2013
Posts: 49
California
Thank you so much Gloria and Christine for the helpful information. I'm so sorry for your loss, Gloria, and I appreciate you staying here to help those of us still in the battle.
I wish I could make my own tube food, but, as you say, Christine, the nasal tubes are narrower and would probably clog frown I'll discuss this more with the doctors and nutritionist.
Anybody else out there have experience with obturators? I would appreciate more input on how the adjustment went, problems with speech and eating, etc.
Thanks friends!
Karen


Teacher Karen
DX: SCC of right maxillary alveolar ridge, 9/2010.
Surgery 11/2010, removal of 4 teeth and gum.
Surgery 11/2012, removal of 3 teeth and gum.
IMRT 1/2013-2/2013
Surgery 1/2015 right hard palate-maxillary alveolar ridge-retromolar trigone SCC resection w/clean margins; removal of 1 tooth and gum.
Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection.
Cetuximab based chemoradiation 64.8 Gy to resection bed.

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