| Joined: Dec 2012 Posts: 3 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Dec 2012 Posts: 3 | Hi everyone I wonder if anyone can tell me if there is life with an obturator? Six months ago I had surgery to remove a growth in my sinus. I have had half my top jaw removed, all top teeth (Save one) along with 75% of the roof of my mouth. I wear an obturator, which is being fairly regularly assesed/modified by the restorative dentist but it is all done using guesswork - He looks into my mouth, adds some naterial to lift/seal it where he thinks it should be - I struggle to explain myself to him properly. I know the obturator doesn't fit right but trying to explain this is so difficult/frustrating. I have gone backwards with regards the obturator - I am on my 4th one now and each and everytime the fitting gets worse, yet he says it's made from the mould taken from my mouth and yes, on paper it should fit BUT it doesn't! I am now on PEG feeding as I just can't eat without it coming out my nose and dribbling down my chin!
I just wonder if it will ever come together - Depressed doesn't even come near to how I feel
Thank you to anyone | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Hi, I'm afraid I don't have any experience with what you are going through, but I did want to say I'm so sorry. I cannot even imagine. I do know there are folks that will come along that can tell you about their experience, so hang in there. You have definitely found the right place to be. We are a great support group for each other. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | 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 | Kyrie, welcome to OCF. Im sorry you are having difficulty in adapting to a new way of life after your cancer battle. Its not always an easy road to deal with whats left and pick up the pieces.
I dont have an obturator but have chatted with many who do use one. It is NOT the end of the world!!! Sure things are not as easy as they were before cancer but you can still go on to live a decent productive life. Give yourself time to recover, its only been 6 months so there is probably still swelling and healing going on. A speech pathologist should be able to help you with talking and eating with the obturator.
Many oral cancer patients and even some caregivers have sought out a therapist and also taken anxiety meds to help adjust to their new normal. Its nothing to be ashamed of! Your life has been turned upside down and now you are probably thinking "whats next". A therapist can help you talk this out and see things in a different light. I know its easier said than done and I dont have an obturator but I faced some pretty major hurdles myself with oral cancer. After my 3rd round of OC, I was left very disfigured which is awfully difficult for someone who used to be a very attractive woman. It took alot of fortitude to overcome all the changes and to move on. Even becoming disfigured and having many health limitations it didnt stop me from going out in public with my head held high. No matter what happens in life, you are still the same great person inside. Nobody can take that from you!
Try to find some positives in every situation. First one is that you are alive. Im sure if you look you can find many other good things to focus on to help make your situation easier.
Best wishes!!! 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: Dec 2012 Posts: 3 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Dec 2012 Posts: 3 | Bless you both, Kathy and Christine. Sometimes a few simple words makes ALL the difference. Thank you... Your words are so true and I know I am lucky and grateful to be here - I admit to feeling sorry for myself - I don't pretend not to - You have both helped in ways you may not know... and I thank you
I keep moving on from the moments of depression... One day, I know they will be so far away, I won't know them. KEEP GOING ALL!
| | | | Joined: May 2010 Posts: 5 Member | Member Joined: May 2010 Posts: 5 | Kyrie, YES there is life with an obturator! Believe me, there was a time when I wasn't so sure myself. I had a salivary gland tumor and lost part of my jaw, some teeth and most of the roof of my mouth in April of 2010, followed by radiation. I could not understand how I was supposed to function with an obturator, and it did take a while. I had a surgical one, followed by 2 interim ones, before the final one was made about a year post-op. I also have a spare now.There were plenty of appointments in that time, with lots of trial and error. It seemed if my voice was improved, my breathing and swallowing suffered, or I would leak terribly. My prosthodontist was/is a godsend, but there were times early on when I struggled to get her to understand just what was wrong with the fit. Do not give up! It seemed I'd never reach the point where I could live my life and not feel like an obturator with a person attached rather than the other way around. I am happy to tell you, with patience and perseverance, you can live and thrive with one. I should say- on occasion, I still choke a bit and certain foods thin right out of my nose, but now I can eat enough to maintain my weight, and everyone understands my speech. It was a long road and not always easy, but you will get there!
Diagnosed at age 41 Intermediate Grade Mucoepidermoid Carcinoma of Minor Salivary Gland Presented in Hard Palate Partial Maxilectomy 4/26/10 IMRT radiation completed 7/10 Obturator
| | | | Joined: Jan 2013 Posts: 23 Member | Member Joined: Jan 2013 Posts: 23 | Kyrie, I am new to this Board. I was diagnosed in August and had surgery on 9/27 for SCC on my upper right gums. I had about 1/3 of my upper jaw removed (4 teeth) and about 50% of the roof of my mouth. I had 33 rounds of radiaton that ended on 12/5/12. I wear an obturator. I had an initial one put in at surgery, now my post surgery one, and will have a final one within a year of surgery. I am not having as much problems as you are having with the obturator, but I do have some leakage with a nasal mucas junk. My biggest problem is just feeling it in my mouth and having it there all the time. My speach is about 95% normal. I can eat most foods and have about 60% of my taste back. I do not have issues with food/water coming thru the nose, so it seems that could be helped for you. I hope things get easier for you. I know this path is a hard one, and a lot harder than I even expected. Best wishes. I hope things get a little easier for you.
Eric
SCC 9/2012 right upper right maxilla Surgery 9/27/2012 to remove portion of right maxilla DX-after surgery cancer cells in margin RAD-33 TX ended 12/05/12 2/13-current-Severe Trismus and Radation Fibrosis 6/13-clear PET 6/13-Infection in radiation area of mouth, with surgery to drain infection 8/13-ended 40 HBOT treatments 11/13-Clear PET 3/14-Botox injections for severe Trismus 5/14-Clear PET/ 11/14-clear PET Male age 53, non smoker, non drinker
| | | | Joined: Dec 2012 Posts: 3 "OCF across the pond" Member | OP "OCF across the pond" Member Joined: Dec 2012 Posts: 3 | THANK YOU Shellef and Eric... Thank you both SO much. I am at the restorative dentist on Thursday for the start of one week sessions to make me a new obturator.... The one I have is so heavy and only having one tooth to hold it in place is causing me problems... The feeling of any food/drink behind the obturator is something I can't handle mentally at the moment. The hospital put me a PEG in so I feed using that and it keeps my hydration levels up. I miss food though... I had a "real" meal at the weekend (I can only eat Puree food) and it was SO nice to taste food again but as ever, it meant spending half an hour cleaning out my face and I have serious mental issues regarding that - I cant comprehend the enormity of what has happened to me, where has my tiny mouth gone, I suddendly have this vast great cavity in my face and it is scary. I hope one day an obyurator can be made that significantly reduces the amount of food/drink that gets behind it, only then will I feel able to eat using my mouth. Take care and thank you for posting... I take great comfort from both of you. | | |
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