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#133609 04-29-2011 03:00 PM
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Hey..My name is Nicole and I've been sneaking around these boards for the past few months but have been too shy to ever "speak" up and introduce myself.

I'm still feeling a bit quiet, but I wanted to throw it out there that if anyone ever needs to speak to someone that recently underwent a maxillectomy or discuss what living with an obturator is like, I'm here. I check the forums every day so either a PM or an email would be fine.

In my case, I was fortunate to have a benign tumor (no radiation, etc) but the surgery and emotions related to the surgery were pretty similar to what would have happened had the diagnosis been different.

Hope everyone enjoys their weekend!


Nicole - Age 31 - Queens, NY
Wife, Mommy (4 years)
Upper Right Maxillectomy (5 teeth) 3/21/11 - Obturator
Sloan-Kettering - NYC
dustbaby #133615 04-29-2011 06:00 PM
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Welcome to OCF Nicole! Im sure your experiences will be helpful to others on the forum. It would be helpful to the most people to discuss obturator publicly on the forum rather than by PM or email. Please dont be shy!

Im sure you have gone thru quite alot with your surgery. You are very fortunate not to have had cancer!!!! Best wishes with your continued recovery.


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
ChristineB #133630 04-30-2011 06:24 AM
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Nicole, Welcome aboard our lifeline. Ditto to what Christine just said.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #133767 05-02-2011 06:11 PM
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Hi, Nicole, and welcome! For those of us with obturators, it sure is nice to hear from others -- there aren't that many of us, as far as I have seen. Do you have your "definitive" obturator (permanent)? I'm in the process of having mine made -- not much fun, lots of PTSD-ish feelings around it (reminders of the surgery). I'm happy to be able to talk and eat without a problem, though; these obturators are pretty miraculous.




Chrissy

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
mightymouse #133771 05-02-2011 09:36 PM
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Thanks for the welcome everyone! Chris, I still have my interim obturator, they expect to start discussing a definitive one in about 2 months. They certainly are miraculous! The difference in speech still hits me (emotionally) when I don't have it in.

Out of curiosity, what makes the transition to the permanent one not so fun? Are you having pain? From what my doctors have told me, the permanent one feels like heaven compared to this one, so at least there is something to look forward to =)



Nicole - Age 31 - Queens, NY
Wife, Mommy (4 years)
Upper Right Maxillectomy (5 teeth) 3/21/11 - Obturator
Sloan-Kettering - NYC
dustbaby #133781 05-03-2011 04:39 AM
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I'm just not having much fun getting the moldings done -- it feels invasive, having that goo stuck up in my surgical defect (as they call it). Just my personal experience. It's not pain, just uncomfortability, and reminders of when I had my surgery done. The process really isn't bad, and supposedly the permanent one is indeed better than the interim one (which I've been wearing for more than a year now)(long story).



Chrissy

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
mightymouse #133832 05-03-2011 10:27 PM
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Posts: 131
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Hi
Iv got my interim one I was told I'd have to wait a year for my final one once things settle down after rt. I had tooth out and had to put my original one in it wAs terrible! I realised how much better the second one was (I had thought it was no different)so I'm thinking the last one should be brilliant! Know what you mean about having impressions done:( I kept gagging. Mine is pink plastic but iv heard the final one is made from titanium?


Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator

Age 45
jayneday #133833 05-03-2011 10:31 PM
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Nicole
I'm with you on the voice thing it's hard. I take mine put after meals and to sterilise before bed but hate the feeling of it being out of my mouth. I leave it in at night. I think I will get better when it heals more. I have been looking more at the surgery site and it's getting easier. It's like everything given time we get used to it!


Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator

Age 45
jayneday #133926 05-06-2011 09:25 AM
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Jayne,
Not sure if it's titanium or some other light metal...I had been leaving mine in overnight, too, until my current prosthodontist told me it was better to sleep without it. I actually look forward to taking it out every night -- though I do feel a bit helpless (like if the phone suddenly rang, how would I answer?). Anyway, ask your prosthodontist about leaving it in vs. taking it out -- I've had different advice from different prosthodontists.

It will all get better when your surgical site heals more -- I have absolutely no pain of any kind any more (I'm two years out).

BTW, did your prosthodontist fit you for fluoride trays?


Chrissy

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
mightymouse #133932 05-06-2011 12:03 PM
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Posts: 131
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No trays, they took out one tooth but said others may follow, myxsurgery was very close to my front teeth and I'm lucky to have kept them. I will ask about trays. I'm having upper jaw and nasal area radiated, and they don't seem that fussed about my teeth. My hole feels big but I was told it will seem smaller as it heals. I will get used to it I know it just feels horrible as the edge is so close to my teeth and my gums haven't healed properly as the surgery was done inside my mouth under my upper lip instead of the outside to prevent scarring. I get braver about looking each week but it's going to be a while before I'm coping well with it.
Keep well
Jayne


Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator

Age 45
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