#57833 02-03-2006 01:00 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | It seems like it has been quite a battle for the past two years to address the teeth that were removed, the remaining teeth breaking, the tough job of trying to chew without biting my tongue and the gaping holes in the back where the chewing teeth used to be. I finally see some opportunities unfold in front of me and now they say no way for implants because of the amount of radiation I received (from the same oral surgeon that has been writing letters for me to the insurance bozos).
I know this sounds so petty but I just had to vent (to my friends, of course).
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#57834 02-03-2006 01:18 PM | Joined: Oct 2005 Posts: 122 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Oct 2005 Posts: 122 | Ed,
Go ahead and vent! I remember crying in the dentist office because what I thought was going to be a filling turned into a root canal and crown 3 months after surgery. I was so fed up with people screwing with my mouth!
I am sorry you are having this difficulty, my friend. Are you headed for a gleaming new set of choppers a la denture?
Beak Them!
Sincerely, Lisa
SCC Tongue T1N0M0\Dx 3-10-03 Hemiglossectomy, alloderm graft, modified neck dissectomy 4-14-03 3 Year Survivor!
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#57835 02-03-2006 03:39 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | You just want to chew, I just want to *swallow*--I am still having major problems with anything but liquids and there are days I choke on the liquids too! The aftereffects of oral radiation can really get you down sometimes.....sorry you were told no implants.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#57836 02-03-2006 05:52 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Ed, my jaw was radiated six ways from Sunday and I have some dandy implants. Getting them involved hyperbaric therapy, but they are firmly planted and chew very well. I would suggest a second or third opinion. If I can have them, I think just about anyone can. The guy who did them is an ENT/DDS and his middle name is Arrogance, but he does good work. He used to be at M.D. Anderson, and I will be seeing him on the 13th if you want me to ask him for a TX referral. Lower implants and an upper denture are not like real teeth, but they are so very close that I will never complain. Let me know if I can help. | | |
#57837 02-04-2006 09:14 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | Mybe my financial ship will arrive and I can afford the implants. Currently the VA dentists are struggling to save my remaining 10 teeth. They won't even discuss the possibility of implants or any prosthetic devices due to lack of saliva. Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#57838 02-08-2006 04:07 PM | Joined: Jan 2006 Posts: 42 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jan 2006 Posts: 42 | Hi Darrell, I was in the same boat. I had 12 root canels and finally had the bottom teeth pulled. the top teeth are doing fine. I understand the chewing part. I eat baby food and sweet potatoes, Ice cream, and bake potatoes and mashed potatoes. I get frustrated when I see my family eat stake, and so on it doesn't seem right but at least I'm alive. I do try and chew once in a while fruit, and maybe a doghnut but not much. Cathy
Cathy
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#57839 02-09-2006 03:55 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Hi, I had my six top teeth replaced yesterday with 6 crowns. Insurance does not cover any of it but it had to get done, very expensive! My teeth under 4 top veneers (veneers done pre-cancer)were very decayed, etc. The temp crowns look very nice I go back for real ones in two more treatments. I am still afraid to bite into anything and always take small pieces and chew on the right side (flap on left) and it has been over 3 years since surgery and radiation. My two cents worth. If any others have had crowns put in top front, let me know how they have held up. Thanks, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#57840 02-09-2006 07:51 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Ed, They only left me with 12 teeth, 6 upper and lower. I have an upper and lower partial that snap into place. I showed this to Susan when we were in Vegas. They capped my 4 eye teeth and put a ball and joint device on them whic used to anchor the partial in place. Works very well. Don't remember name of it, but can look it up if you need me to.
Carol, As I mentioned above, my four eye teeth were capped in 1998. No problems. My remaining 4 uppers were capped last April. No problems yet. My remaining lower 4 will be capped this year. Hubby, Charles, had just about every tooth in his mouth capped 4 years ago and he has had nor problems. As to chewing, neither of us have had any problems. I had my temps for over a year due to problems with getting the permanent ones exactly the way I wanted them. I had one fall off, natually while on vacation, but just went to dentist to have it reglued. So you should be able to chew away unless doc said otherwise.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#57841 02-10-2006 04:20 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Thank You Eileen for your response. I bought a tube of fix o dent yesterday just in case one of the temps fall out, SMILE! Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#57842 02-10-2006 06:40 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Thanks for all the responses and of course, the support. I feel like such a whiney baby  when I see what many have gone through. I am surely one of the luckier unlucky ones. Eileen, I will have to ask Susan if she remembers since I only remember the $200+ quarters  . Joanna, I am intested to hear who your Mr. Arrogance would suggest in Dallas. An oral surgeon Susan worked for has been involved in some type of fellowship at MD Anderson and he has been trying to help. Feel free to PM me. Thanks again to all of you. Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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