#79498 08-27-2008 10:08 PM | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | OP  "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 |
Today I had an appointment with my Maxillofacial surgeon who told me that my new jaw bone is looking good and they can now start to look at getting me some teeth implants. Due to the osteoneocrosis just about all of my bottom teeth had to be removed to reconstruct the mandible jaw.
This news was totally unexpected as I was told earlier that they probably wouldn't start to think about teeth implants until next March/April, but the surgeon said it looks like there is enough bone. They will also have to "build some gums" to.
While they do the implants they will also be doing another tongue flap reconstruction (#3) to HOPEFULLY improve the flap and give me more mobility with my tongue. I have had a PEG tube since March 2007.
In a couple of weeks I will start to see the other plastic surgeons/specialists and begin to get the xrays and scans etc to get the ball rolling.
I hope SO MUCH that after 17 months of drama this is the beginning of good things to come.
Fingers, toes etc etc crossed ---- Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | so happy to hear this good news for you. i will pray that this good news continues and that all begins to smooth out for you. high fives for hanging in there. 17 months seeems like a lifetime i am sure but looks like that will soon be ending and life will begin looking up again. congrats gal!
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Karen,
Great news and lets hope this is only the start of more good things to come.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Oh boy Karen, that is good news. I am glad for you as I wait for the news someday that I can get some dentures. Kind of hard to eat with gums and what's left of a tongue smashing food against the roof of the mouth. Good luck with those implants.
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
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Karen,
Congratulations on the good news. Have they mentioned anything about Hyperbaric Oxygen (HBO) treatments before doing the implants?
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | OP "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Thank you all soooo much for your best wishes.
It certainly has been an ongoing struggle. Just the fact that the surgeon is making arrangements for me to get things moving this soon is an achievement in itself...
Jim .....I have read your posts and I know that you and some others who have had complications and ongoing problems can really relate to my long term frustration of being unable to eat - only people who go through this or are very very close to someone who has really understands the impact that this has on us and our lives.
Jerry.....I had 30 HBO treatments earlier this year before I had the teeth taken out and my jaw bone replaced / reconstructed. I actually asked whether I should go and have some more HBO's before getting implants and one of the Oral surgeons told me that the HBO treatments are good for about 8 to 10 years so therefore there would be no need for me to have any more.
It sounds like a long time doesn't it - but that is what he said.
That is probably also a really good thing considering what I have read here about the huge cost of the treatments over in the US compared to here in Australia. Each 'dive' here costs about $140.00. Insurance covered my 30 treatments.
Karen
Last edited by Karen Rose; 08-28-2008 07:07 PM.
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi Karen, Great news that things are now moving along for you much quicker than first thought. It is frightening to think that you will need to have the flap done for the third time. Like you I am amazed at some of the costs mentioned by some in the US and Canada. Mind you I am still not sure, after all that creative accounting by his wife what David paid  Will be keeping every thing crossed for you and let us know when the operation will take place. Love Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
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Joined: Mar 2008 Posts: 404 Likes: 2 | Thanks Gabriele
You are not wrong about the flap - it certainly has caused me alot of grief and continues to do so.
I'm sure the plastic surgeon will have plenty to say about it when I see him in the near future - you can actually see him cringe when I walk into his office............. I keep telling myself, As long as he CAN DO something that is the main thing.
Karen
Last edited by Karen Rose; 08-28-2008 10:41 PM.
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Aug 2008 Posts: 14 Member | | Member
Joined: Aug 2008 Posts: 14 | Wonderful news for you, Karen. It continues to amaze me how people who have faced so much still find the time and energy to give to others in the same boat, as I know you have done. Good luck with your unexpectedly good news!
--Karen
husband 58 DX mid-July 2008 SCC right retromolar trigone region. Surgery 8/26/08 segmental mandibulectomy with fibula free flap reconstruction. Insulin-dependent diabetic.
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | OP "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 |
Thanks Karen - I really appreciate your kind words
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Karen Rose,
I would question the fact that HBO treatment does not need to be repeated.
Search the forum using the search engine at the top right. I believe others have had it repeated.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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