| | Joined: Jun 2009 Posts: 71 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | Hi - I had my jaw removed last October due to O.R.N.. Would any of you be able to recommend a team/doctor/facility that would possibly be able to help to get/make me a new jaw. I still have my left fibia available for a bone graft(?)/transplant(?)/Flap. Thanks for any advice you can provide.
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Airkitty,
The Medical University of South Carolina right there in Charleston is one of the top rated Ear Nose and Throat programs in the country, go there. The best advice is to in cancer/reconstruction is to get the best medical professionals available to you and that program is ranked #30 out of over 4000 programs nationwide.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jun 2009 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jun 2009 Posts: 71 | I used to work at MUSC so I am well aware of their awards and accolades. My question stands.
11/1999 SCC tongue - surgery
1/2000 Met(s) in lymph nodes - modRND
2/2000-4/2000 RT ~6 weeks
end of 2006 SCC tongue - surgery
1/2008 SCC BOT - surgery / PEG installed
2/2008 chemo & RT
4/2008 last time I consumed solid food by mouth
| | | | | 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 | Ive gone thru the mandibulectomy too. There are some top notch reconstruction surgeons in the Philadelphia area at some major cancer centers. I will check with Anita to see where Clark was treated. They did beautiful work on him!!!!
After going thru rads, healing from reconstructive surgeries can be a problem. My docs also insisted that I wait at least one full year before they did any adjustments. They said my body needed at least one full year to make certain the surgery 'took' and then they would be able to do further reconstructions. If you had yours done last Oct, then you are being very smart to seek out doctors for your reconstruction. The surgeries are usually quite simple with only staying in the hospital one or 2 nights. If I hadnt been so delicate after my original surgery, I would have been allowed to go home the same day. My docs were extra cautious with me due to my complications.
Good luck!!!!
PS.... Im missing a lower left jaw myself due to complications.
Last edited by ChristineB; 08-08-2012 01:27 PM.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Airkitty,
Having had a mandilbectomy myself, with my left fibula no less, I'll tell you that it's a huge surgery and you don't want just anyone to do it. You're fortunate to have one of the top ENT programs in the country that you are familiar with in your backyard so I guess I'm confused as to why you would look any further. If you want a better program than you'll travel out of state, if you are OK with that than John Hopkins is in Baltimore I'd suggest there if you are not comfortable with MUSC.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Airkitty,
Clark had his mandibulectomy done at The Hospital of the University of Pennsylvania. An oral/maxillofacial surgeon and a plastic surgeon did the work. They used his left fibula and he had a beautiful outcome. If you PM me, I will give you the names and contact info for them. It is a huge surgery and I agree that you should feel confident in team you choose. Clark was in the hospital for 8 days. His team has done many of these procedures. My best to you as you make your decision.
Anita
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | UPMC in Pittsburgh is good at that. They just made a new jaw for a lady that had her jaw and some of her face blown off by a shotgun blast from her boyfriend. They did a great job. Thery were supposed to make me a new one too until a test revealed that the pice of bone they left is vewry bad from a Mersa infection that was hard for them to get rid of. The Dr said he would do it but it would only last a few short weeks and out it would have to come. I guess I live without a jaw and keep this droopy jaw. They had pics of the girl in the paper and a full article about what they did. Good luck airkitty.
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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Jim,
I'm a UPMC patient now. Who do you see there? They got me to a clear scan afted three other places said I was terminal. Obviously I love these folks. I have been to University of Michigan, Sloan Kettering, MD Anderson and Pitt and I found Pitt was the best prepared place of them all.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Seriously?.. Kelly that's awesome and crazy!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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