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Mandibulectomy complications years later #194740
06-27-2017 09:34 AM
06-27-2017 09:34 AM
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chicago, illinois
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marmc Offline OP
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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; 06-27-2017 11:14 AM. Reason: moved to its own thread

photoperson
Re: Mandibulectomy complications years later [Re: marmc] #194742
06-27-2017 02:15 PM
06-27-2017 02:15 PM
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ChristineB Offline

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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
Re: Mandibulectomy complications years later [Re: marmc] #194744
06-27-2017 06:47 PM
06-27-2017 06:47 PM
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Posts: 16
chicago, illinois
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marmc Offline OP
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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
Re: Mandibulectomy complications years later [Re: marmc] #194849
07-11-2017 04:22 PM
07-11-2017 04:22 PM
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Melbourne, Australia
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Karen Rose Offline
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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
Re: Mandibulectomy complications years later [Re: marmc] #194956
08-07-2017 09:02 PM
08-07-2017 09:02 PM
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chicago, illinois
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marmc Offline OP
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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
Re: Mandibulectomy complications years later [Re: marmc] #195515
12-14-2017 09:52 PM
12-14-2017 09:52 PM
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marmc Offline OP
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It's December, 2017 and my husband is still having a small infection on the outside of his jaw. He's been on antibiotics for about two months. It improves a bit, then comes back. Will call the doctor this week probably to see what to do as John finished the antibiotic and tonight he still had oozing from the wound. When we saw the doctor, he said he didn't want to do more surgery. We're wondering if it would help to see an infectious disease specialist? If anyone else has experience this problem, we'd really like to know how you handled it. The idea of more surgery is overwhelming at this point. Any info we could get right now would be appreciated. Thanks so much.


photoperson
Re: Mandibulectomy complications years later [Re: marmc] #195516
12-15-2017 04:23 AM
12-15-2017 04:23 AM
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ChristineB Offline

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Yes, the infectious disease specialist should be helpful. I would also suggest seeking out a wound care specialist. The treatment facility your husband goes to should be able to help you with finding these specialists. Hopefully they will be affiliated with his facility and work together with his current team of doctors. There's all kinds of different things available to wound care specialists to help to heal stubborn wounds. Patients who have had rads have compromised healing capabilities around the field of radiation. I feel so bad for your husband, hes been thru so much already!

After the complications from my mandibulectoy, I had a "tunnel" open wound about 6" long that ran along my cheekbone to behind my ear. It was comparable in size to a 6" long piece of cooked spaghetti noodle. No matter what my doctors did, this sore just refused to heal. I was referred to a wound care physician. After about a month they suggested I also see an infectious disease doctor. I saw the wound care team 2 or 3 times a week and the infectious disease specialist about once a week. Every so often the wound care staff would take a swab of the wound and send it off to the lab to see what type of sore they were treating. The wound care office was located across the street from the infectious disease doctors office. About every other week, the infectious disease doctor would pop in during my wound care appointment and check on my progress. It took a long time, about 9 months but the wound finally closed. I ended up doing 8 months of very strong antibiotics 3 times a day thru a picc line along with HBO and with the wound care team's special treatments it all came together and closed the stubborn "tunnel".

Hope this info helps you. 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
Re: Mandibulectomy complications years later [Re: marmc] #195518
12-15-2017 04:54 PM
12-15-2017 04:54 PM
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chicago, illinois
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marmc Offline OP
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Thanks so much, Christine. I didn't know of anyone else who'd had this kind of problem. We are Northwestern with two great docs so after the holiday we plan to go back and ask to see the wound care person/and infectious disease specialist. John has already had hyperbaric before his big jaw replacement surgery, but no one has mentioned it for now. It just heartens me to know that though it took a long time, your wound finally closed up. Man, this is a long haul. You guys are such a huge help. Hope you have a wonderful holiday!


photoperson
Re: Mandibulectomy complications years later [Re: marmc] #195520
12-15-2017 06:18 PM
12-15-2017 06:18 PM
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ChristineB Offline

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I hope your husband has the same great results with his wound finally healing. I was very impressed with the different things the wound care specialists used in attempting to get my tunnel to close up. They would change my treatment to something new if there was no progress after about a week to 10 days of using something. The flexibility of my infection disease doctor was something I wish more physicians would do. She would go out of her way to leave her office and go across the street to check up on me during my wound care appointments. These specialists really outdid themselves with how well they worked as a team when they were not at all affiliated.

I suggest asking if HBO would help with your husbands recovery. HBO has been shown to help with healing, especially in cases like your husbands and mine where we previously had radiation which caused our wounds not to heal. Its worth a shot. Be prepared for lots of trial and error until the team hits the right combo specifically for your husbands needs.

Please keep me updated on how you make out with the next phase of your husbands recovery. Have a wonderful and healthy holiday season smile


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
Re: Mandibulectomy complications years later [Re: ChristineB] #196892
08-09-2018 09:35 PM
08-09-2018 09:35 PM
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Posts: 16
chicago, illinois
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marmc Offline OP
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Hi Christine,
So, it is 8 months later. John has seen infectious disease wound specialist, been on two antibiotics, Cipro and Augmenten for two months. So far, the meds have cut the pain in my husband's jaw, but his wound has still not healed. it just looks a little different. Back to docs at the end of the month to see what's next. Hyperbaric is eing considered. I just get the impression now that no one really knows what's going to work to heal John's wound. On top of that, he's developed a prostate problem (he's 73) and now he has to see a urologist in a week or so. Spent 6 hours at the hospital E.R. last Saturday night waiting to get some help for the prostate problem, finally had to leave because it was 1:15 a.m. and we still hadn't been taken care of. Went home, had him take a valium and a hot bath and the next day went to the immediate care center and actually got some medication to help the prostate problem.

It's been more than 10 years since John was first diagnosed with tongue cancer. I keep wondering when we're finally going to get some relief. John is always stressed, worried that something else is going to go wrong. I don't know what else to do to help him. I keep wondering if we're ever going to have any kind of "normal" life again. He hasn't had any solid food in 2 years. I can't even imagine how rotten that is.

Sorry to complain. I'm so lucky that I still have him. Just tired of the endless doctoring, I think.



photoperson

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