| Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | I'm new to this. I am my husband's caregiver. November 2007, my husband had surgery for SCC, right mandibular retromolar trigone resection with free flap reconstruction. He is diabetic with excellent control of glucose (A1C 6). One week later, free flap became necrotic and had to be redone. PEG tube Jan 08 then six weeks radiation ending in March.
Post radiation infection with surgery to open and drain. Then HBOT (40 dives). PET--July, Oct., Dec. 08, and July 09 clear.
The first PET showed a loose screw in the center of the plate on his jaw and was removed in the surgeon's office. That hole never healed over and oozed junk for months.
Last April, the lower front edge of the plate broke through his skin near his chin and another screw came out. Since then, the skin has receded and one third of the plate is exposed. We found out today that he had fractured his jaw right where the first screw was!
He will be having jaw reconstruction in November using his fibula and skin graft from (R)leg. We are hopeful that this will correct a number of issues. ie jaw alignment, bite, mobility, vascularity and of course appearance.
So, has anyone out there been through this? The PS estimates 6 to 10 hours for the procedure and 6 days in hospital.
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Hi Anita and welcome to our family,
the procedures your husband has had are fairly common place now i am sorry to say,and a lot of our members have had them done .Unfortunately a few have had similar complications,but of course with diabetes present the chances of this happening are a lot higher.Lets hope this second go round will be more successful.I am sure you will gets lots of feedback from the guys here and keep us updated on his progress.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Jun 2004 Posts: 155 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2004 Posts: 155 | Anita I have no answers as Bobs surgery for the flap etc was down graded during procedure BUT there will be answers here. If they are not forthcoming search the site and find them. Sending wishes for a good outcome
Caregiver Husband Bob SCC tongue t2nomo Partial Glosectomy/neck disection 6/04 rad ending 9/23/04 Osteoradio-necrosis of the Mandible (ONJ) DX 6/09 Surgery 7/2/09 mandible resection/ several teeth extracted/ neck dissection NO FLAP and aggressive antibiotic therapy.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Reading what Bob has been through makes me feel like a complete chicken!! Wow - he really has been through the ringer. I don't have any answers regarding his former or proposed surgeries but wanted to welcome you to the board anyway. I know there are some here who have had similar surgeries and will respond.
Hope all goes well in this next surgery.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Anita, your Bob has been thru quite the war with this OC and it;s good he has you by his side. There is nothing I can add to the words of wisdom by the posters above this. They are knowledgeable people. You and Bob have all of my best for whatever that is worth. jim
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: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Thank you all for your thoughts. My husband's name is Clark. He has a positive attitude and is ready to get moving on this. I will let you know how thing progress. Thanks again for your support!
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: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Anita,
Sorry to hear that your husband is having to deal with this. Just when you think that you can get on the road to recovery BAM something like that happens and you have to deal with something so major all over again.
I have had nearly all of my mandible replaced & reconstructed with bone from my hip. They also had to do a tongue flap reconstruction because of the necrosis damage. Besides the bone they also used the skin/tissue from my hip area to reconstruct the tongue flap. They could have used my fibula for the mandible but then they would have had to of taken skin for the tongue flap from else where anyway, due to the hair follicles on the leg area.
I had a screw become exposed last year under my chin, thankfully that was removed without any major dramas in day surgery before any infections could occur.
The surgery for my mandible took about 14 hours, but that also included the tongue flap reconstruction. I was in hospital for about 4 weeks. I had a trache for the first 12 days due to the swelling, which I was advised of before the surgery. I have 7 or 8 plates around my reconstructed jaw bone with at least 18 screws (what I can see on the OPG xray)
As there was about 5 cm of my jaw reconstructed - my jaw/chin is not the same shape that it used to be and I will need to have further surgery to improve that.
In my situation there was also the possibility, due to surgery, of some nerve damage at one side of my mouth, so that is something that you definitely should ask the surgeon about.
Please send me PM if you have any questions that you think I might be able to help with.
Karen
Last edited by Karen Rose; 09-25-2009 11:35 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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi Cookey,
Thanks for responding to my post. You are so right about diabetes being a complicating factor. That's exactly what Clark's doctors say, even though he has tight control.
I'll let you know how thing go with his surgery.
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi Deni,
Thank you for your well wishes. It's very comforting to be among others who really know what this journey is like. All the best to you and your husband.
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Hi Donna,
Thank you for taking the time to welcome me here. I am so glad I found this site! And it is encouraging to be among so many who share their unique and similiar battles with oral cancer. You are not a chicken, I see you more as a beautiful swan.
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
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