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#194118 04-10-2017 08:51 AM
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Stuart7 Offline OP
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I have never posted anything anywhere before, but I could really use the help. I was fitted with an obturator shortly after surgery. I have found it impossible to get used to. My quality of life is diminished as I only wear it to eat and when I go out, which I don't do nearly as much as I used to. Per my prosthodontist the obturator is a good fit. He suggested that I look into microvascular flap surgery, which I did at USC. The two options presented to me were a bit too invasive and the outcomes not guaranteed, which has sent me into looking for other options. Hence, any information on other surgical procedures would be much appreciated to:
1. Repair the small opening to my nasal cavity.
2. Options available so I no longer would need to wear the obturator.

Any and all help would be much appreciated.


Dx 12/17/15 SCC upper alveolar ridge T1-T2N0M0
Surg 2/24/16 Rt Part Maxillectomy/Alveolectomy
ext tooth 1 - 5, clr marg, no rad nec
non-smoker, light drinker, otherwise in good health
Joined: Apr 2017
Posts: 16
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Hi there

Sorry to hear of the changes in your "Quality of life" omg boy oh boy I can relate.

But forgive me, what is an OBTURATOR? Im not familiar with the term.
Do you have a tracheostomy? Is that the same? I am also living on a trake for over 5 years now. N ur right it's no picnic. But I was running around. So im not sure where your at with your recovery.

Hope you feel better


SCC 5/21/09 Base Of Tongue, Stage 4-age 42
5X Cipltn, 37 IMRT end 9/09
10/09 neck disection- 2nd Feed tube instal
2/11 Tracheostomy-
2/12 - 2/13 over 25 Diolations
2/14 Total voice loss
2/15 Total Laryngectomy Researched
2/16 Jaw bone starts to deteriorate TL put on Hold
6/16 30+ HBO dives
Annual PET shows NED until the hot spot lights up the jaw bone
1/17 Jaw Replacement research
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

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Posts: 10,507
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Welcome to OCF! Im so very sorry to read about the problems you are having post treatment. It sure isnt easy when a patient has ongoing side effects that impact their daily life.

In your signature (great job by the way!!!) I see you did not have to go thru rads. Without having radiation, you should be able to bounce back from reconstructive surgery. To me it sounds like this could be a very good choice. If the surgery is successful, you can kiss that obturator bye-bye for good. I dont think any surgeon would tell you they are 100% positive the surgery would fix your open sinus cavity. To me, I think this type of intricate surgery is on a case by case basis. Its not an easy decision to make. If you dont try, you will never know if it could have worked or not. By having the surgery, you have nothing to lose if it doesnt work. I would definitely get a few opinions before selecting a surgeon. Maybe this procedure could be done with the davinci robot so its less invasive? Not all hospitals have this but its worth looking into.

Best wishes with your decision! Please keep us updated on what you decide and how you make out.



PS....@ Elainy, an obturator is a removable mouth appliance made to cover a non-healing hole in the roof of a patients mouth.


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
Joined: Apr 2017
Posts: 16
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@Christine B thankyou. I don't think i met anyone with an obturator. Does that affect ones speech.? I haven't had a voice in 2years n that has been by far the hardest challenge for me. I'd much rather speak then eat. Rads took both from me.

@stuart7 im sorry for what ur experiencing post treatment. I pray for a comfotable recovery.

Docs advice for me to pursue JAW SURGERY doesn't promise I'd get it all back but certainly might happen in my future. So to me it's a NO BRAINER. I have nothing to lose at this point.

Fingers crossed lol

Last edited by ChristineB; 04-11-2017 05:49 AM. Reason: removed religion from post

SCC 5/21/09 Base Of Tongue, Stage 4-age 42
5X Cipltn, 37 IMRT end 9/09
10/09 neck disection- 2nd Feed tube instal
2/11 Tracheostomy-
2/12 - 2/13 over 25 Diolations
2/14 Total voice loss
2/15 Total Laryngectomy Researched
2/16 Jaw bone starts to deteriorate TL put on Hold
6/16 30+ HBO dives
Annual PET shows NED until the hot spot lights up the jaw bone
1/17 Jaw Replacement research
Joined: Mar 2017
Posts: 2
Stuart7 Offline OP
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Posts: 2
@elainy my thoughts are with you. It sounds like you have had a very difficult road to travel since your diagnosis. My speech is altered making it more difficult for people to understand me when I don't wear the obturator. I wish you all the best with your jaw surgery.


Dx 12/17/15 SCC upper alveolar ridge T1-T2N0M0
Surg 2/24/16 Rt Part Maxillectomy/Alveolectomy
ext tooth 1 - 5, clr marg, no rad nec
non-smoker, light drinker, otherwise in good health
Joined: Apr 2017
Posts: 16
Member
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Member

Joined: Apr 2017
Posts: 16
Hi Stuart7

Thankyou for your well wishes. You are very kind. Im sorry to hear of your difficulties as well. Im looking forward to the JAW SURGERY since is seems to be my only alternative. Hopefully, I will come out of it with a healthy and " Pain Free" mouth. Which is my goal. Wishing you the best.


SCC 5/21/09 Base Of Tongue, Stage 4-age 42
5X Cipltn, 37 IMRT end 9/09
10/09 neck disection- 2nd Feed tube instal
2/11 Tracheostomy-
2/12 - 2/13 over 25 Diolations
2/14 Total voice loss
2/15 Total Laryngectomy Researched
2/16 Jaw bone starts to deteriorate TL put on Hold
6/16 30+ HBO dives
Annual PET shows NED until the hot spot lights up the jaw bone
1/17 Jaw Replacement research

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