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#194740 - 06/27/17 05:34 PM Mandibulectomy complications years later  
Joined: Oct 2008
Posts: 13
marmc Offline
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marmc  Offline
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Joined: Oct 2008
Posts: 13
chicago, illinois
My husband, John, had oral cancer in 2009 and was treated with in-hospital chemo and radiation. 7 full weeks in hospital with chemo 24-7 and radiation every day. It cured the cancer, but he developed osteoradionecrosis of the jaw because of the heavy radiation. Last August, he had to have a good part of his lower jaw replaced.
It was a very hard recovery, but he was getting lymphodema therapy to get rid of the swelling in his cheeks and physical therapy to his neck. Both were helping and he was feeling better--going to yoga 3 times a week. However, in the last several months, he developed sores on the right side of his jaw, an infection. He had several doses of antiobiotic, but as soon as he quits taking the antibiotic, the sores and oozing come back. His head and neck surgeon and his plastic surgeon feel that he has an infection in the titanium plate that was inserted during surgery since the infection is exactly along the suture line. Since John has been on several doses of antibiotic, they were thinking of putting him on IV antibiotics to knock out the infection. But, after considering it, our surgeon felt it was just putting off the inevitable and has recommended a second surgery to take out the titanium plate, clean everything out and stitch him up again.
The thought of a second surgery is daunting for both of us. I would really like to get a second opinion before he goes through with this. John has been treated at Northwestern in Chicago. Very happy with the surgeons. But I need the name of specialist to get a second opinion.
Is there anyone you can recommend that could give us some good advice?

Last edited by ChristineB; 06/27/17 07:14 PM. Reason: moved to its own thread

photoperson
#194742 - 06/27/17 10:15 PM Re: Mandibulectomy complications years later [Re: marmc]  
Joined: Jun 2007
Posts: 9,749
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,749
PA
Im very sorry to read about your husbands problems with infections years after having his mandibulectomy. Thats a very complicated surgery with so many teeny tiny blood vessels to connect. You are doing the right thing by getting at least a second opinion. When discussing the surgery with your husbands surgeon, what did the doc say was going to replace the titanium plate? Most mandibulectomies have the surgeon taking a small piece of leg bone to use in place of the piece of jaw bone thats being removed. Theres also a few patients who have had cadaver bones used to replace their jaw bone.

I suggest calling your husbands insurance company and asking for experienced mandibulectomy surgeons. Over the years Ive seen this type of surgery successfully preformed at all the major CCCs like MDAnderson, Moffitt, Sloan Kettering, Fox Chase, etc. I would advise you to also check into the CCCs before any smaller facility that may not have as much experience with mandibulectomies. Im sorry but I dont have any specific physicians names that I can think of off the top of my head. Maybe you would have some luck by checking out a physician referral site?

Best wishes with everything!!!


Christine
SCC 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 smile
#194744 - 06/28/17 02:47 AM Re: Mandibulectomy complications years later [Re: marmc]  
Joined: Oct 2008
Posts: 13
marmc Offline
Member
marmc  Offline
Member

Joined: Oct 2008
Posts: 13
chicago, illinois
The bone in his new jaw is from his fibula bone in the leg so the titanium plate, they tell us, is no longer needed now that John is almost a year out from surgery and the bone is growing normally. They want to just remove the titanium plate since it's infected and it's no longer needed.

We're on Medicare, but I might try to call our supplemental insurance to ask about physicians.

I'm basically just trying to find out if anyone else has had an infection in the titanium plate and had it removed--what kind of success, if any, have you had.

Thanks so much.


photoperson
#194849 - 07/12/17 12:22 AM Re: Mandibulectomy complications years later [Re: marmc]  
Joined: Mar 2008
Posts: 403
Karen Rose Offline
"OCF Down Under"
Karen Rose  Offline
"OCF Down Under"
Platinum Member (300+ posts)

Joined: Mar 2008
Posts: 403
Melbourne, Australia

Most of my lower jaw was removed and reconstructed with hip bone due to osteoradionecrosis in 2008.

I had bone infections for months. Horrible situation! I was on one antibiotic after another but once surgeons removed the titanium plate and cleaned bone everything healed very well.

Sending your husband best wishes!


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
#194956 - 08/08/17 05:02 AM Re: Mandibulectomy complications years later [Re: marmc]  
Joined: Oct 2008
Posts: 13
marmc Offline
Member
marmc  Offline
Member

Joined: Oct 2008
Posts: 13
chicago, illinois
Thanks so much for this. My husband had the surgery to take out the titanium plate several weeks ago. Feeling better. Parts of his face are still very swollen. I think the hardest part for him is that he is still eating nothing but pureed foods and he's sick of them. Plus, he's really having a hard time with dealing with the way he looks. He thinks the surgeries have really changed him. My feeling is he would be so much better once the swelling goes down and he can finally go back to lymphedema therapy so that he can manipulate food a little better.

A long journey. It heartens me, though, to know that things have improved for you.

Really appreciate your info.


photoperson

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