| Joined: Mar 2011 Posts: 5 Member | OP Member Joined: Mar 2011 Posts: 5 | My prosthodontist also advised me to remove the obturator at night, at least until I get the permanent one. I was told that it helps with the healing, to have it "air" out at night, but who knows.
I'm finally able to fall asleep without a Xanax now, but until last week I couldn't deal with trying to relax with this defect in my mouth. Like Jayne said, everything gets easier over time. Although I don't see me being okay with looking at it any time soon, ha.
I went to my surgeon yesterday and he's really concerned about trismus setting in soon. I'm doing my daily exercises and eating/chewing mostly everything but can still barely fit 2 fingers in my mouth. They measured and I'm at 24mm, normal should be 35-40 for women, 40-45 for men. Anyone having trouble with that, too?
Nicole - Age 31 - Queens, NY Wife, Mommy (4 years) Upper Right Maxillectomy (5 teeth) 3/21/11 - Obturator Sloan-Kettering - NYC | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Nicole, if you do a search on the forum you will find lots of info about trismus. I have a hard time with this also. I wish I could open as much as you are able to! Keep doing the exercises and ask your doc about getting a therabite to help. ChristineSCC 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 | | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 126 | It was a long time before I would look at my mouth, I would not even try to feel it with my tongue. I think it was well past 3 months before I ventured a look. I do have my definitive obturator and yes, it looks really different, some sort of metal. It does fit better, and my Prothodontist even put a couple of teeth on it, back two teeth, to give it sort of a boney ridge. You can't really use them for chewing, but it just feels a little more "normal". It was over a year before I got the final one, part of the delay was with my Insurance. I had to convince them that this was necessary etc. My Prothodontist has always told me to take it out at night, I just keep it by my bed in a cup, handy for a quick insert, if needed. Pain subsided around the 6 month mark. Trismus, really bad, less then two fingers and probably won't get any better. One more of those annoyance that I have just had to adapt to.
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | Itsbeen 7 weeks for me and tonight I felt it with my Tongue and it was not nice. I scared myself as I thought I felt something hsnging down out of the hole! It scared me and I put my obturator straight back in. Is this normal? I didn't know if it was just the edgeof the scar or scar tissue or what? Imxsure it's prob normal and serves me right for touching it with my Tongue  I'm rushing things I think 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
| | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 126 | I lost a lot of the skin graft. It was pretty nasty and scared me that something was wrong and that it didn't "take". My surgeon told me that it did what it was suppose to do, that the skin graft was more like a dressing, and I guess it was normal to loose it. Most of this happened during the first six weeks, and mostly at night when I had the obturator out. When do you begin your radiation?
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | Feel better this morning cleaned it and put back in! Am calm  I start rt and chemo on 24th for 6 weeks . Cisplatin for 4 days ist week and 4th week. I can't wait for it to be over. I'm having Treatmfnt in London a bit of a rubbish journey but doable. It's a long haul but it's worth it! My local hospital wouldn't even try to do mysurgery after 6 weeks of saying they would! But it's done now:) Jayne x
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
| | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2009 Posts: 132 | Glad you got your obturator back in, cleaned, you a bit calmer. Probably -- I'm guessing -- it was some mucus hanging down, or that's just the structure of your "defect," as they like to call it. At some point you will feel brave enough to look up there, and you'll see its shape and get to know it a bit. Don't rush yourself; you'll be ready when you're ready. Once you get started with the radiation, your RO will be looking up there regularly and you might then feel reassured that all is "normal."
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.
| | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | I seem to have a kind of lump hamging down from my surgical site, it doesn't really hurt just feels like nerves. Didn't know if this is normal ? Iv got hospitsl on Friday for pre chemo so will ask when I go. As my hospital is so far away it's difficult to know what to do and if I'm making a fuss over nothing  But I guess if it worries you then ask! Thanks 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
| | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2009 Posts: 132 | You might also call your surgeon and tell him what you're feeling -- he might be reassuring, enough to hold you until Friday when you go for your pre-chemo appt, when someone can take a look at it. The more you ask, the better! That's what your doctors are there for!
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.
| | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | "OCF across the pond" Senior Member (100+ posts) Joined: Apr 2011 Posts: 131 | Have rung and waiting for them to get back to me  Thanks chris Jayne x
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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