Any thoughts on whether this is a mistake...

My husband has osteoradionecrosis and his jaw has now fractured. The fracture was diagnosed a week ago. He will have a bone resection of appox 33-40% of his mandible and a titanium plate will be inserted in its place. The first date available for surgery is Dec 23, a month from now, but that is two days before Christmas. He chose to postpone until Dec 30, figuring if he has to wait for 5 weeks, he may as well wait for 6 weeks. The surgeon doesn't recommend it, but said that he understands. (He is very much in demand as he is a well known expert in this field, so he is worth waiting for.)

Of course we would rather wait until after Christmas, but does anyone have any thoughts on whether this is a serious mistake?

Ive had this type of surgery. The mandibulectomy was for SCC in my jawbone. The replacement jaw made of tintanium was initially used to replace the jaw bone. My doc allowed me to choose my date of surgery. I chose to have my surgery 2 days after my son's birthday. My doc did give me some guidelines and told me to pick a date that was within a 6 week window. Its a big operation and if it were me, I would do the exact same thing and do it after Christmas. A few days will not make a huge difference.

Is your husband's osteoradionecrosis a result from having some type of oral cancer?

Christine,

Thank you for your information.

You say that they used titanium to "initially" replace the jaw bone... Did you later have a bone graft? My husband will keep the titanium plate as a permanent fix.

Did you have any problem with infection afer the surgery? I just spoke to my neighbor, who is an orthopedic surgeon, and he questions why they are doing the resection and the titanium plate in the same surgery, particularly since there is infection. He thinks that this would cause infection to be introduced to the titanium plate and my husband would then live with infection indefinitely. His thought is why not remove the necrotic bone, allow the infection to clear completely and then add the plate to a clean, infection free field. He said that is what they do in orthopedics. It sounds logical. You seem to know AlOT about these procedures. What are your thoughts on his reasoning? We are going to ask the oral surgeon who will do the surgery and his local oral surgeon (who is not doing the surgery because he doesn't take Medicare) what they think.

Yes, my husband has cancer of the base of the tongue 7 years ago. He has dealt with all kinds of issues since then, but this one is the most complicated. We are hoping that the constant pain will finally be resolved after the surgery.

Thank you again for your help and support!!

Happy Thanksgiving!

Anne

I wouldnt be able to even guess at the reasoning behind what your doctor is proposing. Sorry, I cant help more. I may know alot about this type of surgery but thats cuz I gone thru it. There arent alot of us on here who have had this done. Ive been a member of OCF for over 3 years so I have learned alot from the forum.

I had several complications with my operation. The free flap failed and had to be redone. I was kept asleep for 3 weeks. Then I picked up MRSA while at the rehab center. That made me go back into the hospital where I ended up staying for a total of 2 months. Ive done hyperbaric oxygen treatments, had a picc line with IV antibiotics for 7 months, used a wound vacuum, seen wound care specialists, and had visiting nurses for 11 months. After all that, I wont do another big operation. It was a very very long road for me. What I went thru is rare. Everybody is different and responds differently to medications, treatments, surgeries, etc.

If your husband has an infection is he on antibiotics? Is your husband in alot of pain? Did your husband have radiation? I would recommend getting at least one more opinion before going thru with this operation. Dont cancel the date you have set up but please make sure you speak to another doctor and get their advice before the surgery. Another doctor may suggest something less invasive. A mandibulectomy is a rough operation, it takes a while to bounce back from this. Being an informed patient cant hurt.

Best of luck!!!

Anne,

I see you're in FL what Cancer Center are you going to? We have Moffitt Cancer Center in Tampa and Shands I think it's near Jacksonville. You might want to call them for a second opinion.

Connie

Christine,

Thanks for your information. I will try to answer the questions you asked. I apologize for the length of this reply, but I know that sometimes people might look for this kind of information (I know that I use this board to look for similiar experiences.)

We saw our local oral surgeon and posed the questions of our doctor neighbor to him. He answered all our questions and explained why protocols that work in orthopedic surgery do not work in oral/maxillofacial surgery.

My husband's procedure seems to be a little different than anything that I've found on this forum. There will be no "free flap", as I understand that term...i.e., no transfer of tissue from anywhere else. They plan to make an incision under his jaw on the left side of his face, behind his chin. They will lift the skin up to access the section of the jaw that they will remove. They will cut out the portion that has died and replace it with a titanium thing that looks like a bicycle chain...no bone or other tissue will be moved there. Then, they will sew up the incision. The surgery is supposed to take approximately three hours. They say that no one will be able to tell that there is ajust a titanium piece holding the jaw together. Perhaps the section they expect to have to remove is not as extensive as others have had.

His infection is low grade and it comes and goes. He has been taking penicillin prophylactically since the summer, and he increases the dose when his jaw starts to swell and get red. That calms it down.

He is in a good deal of pain, but he handles it amazingly well. His feeling is that while he can't make it go away, he is not going to let it rule his life. He is on Oxycontin (20 mg, 2 times a day) but still has breakthrough pain, for which he takes 5 mg Oxycodone when necessary. Most days, he is able to keep up with his usual activities, but occassionally, he just goes to bed with his I-Pod in his ears to try to escape the pain. They tell him that the surgery may eliminate the pain, or at least reduce it greatly. We will both be very disappointed if that doesn't happen.

He did have radiation...the cause of all of the problems for him. It was seven years ago.He had no surgery and just a little bit of chemo to enhance the effect of the radiation, which they stopped because he was reacting too strongly to it and they were afraid that he wouldn't be able to complete the radiation.

My husband's surgery will be done by Dr Marx at the University of Miami. He first went there in July 2010. Dr Marx told him that he had two options. One was to continue on antibiotics and pain medication and hope that the jaw does not break. The second option was to have this surgery. He declined to do the surgery unless the jaw actually broke, and his dentist and local oral surgeon agreed. Now, however, the jaw is broken and he really has no option but to fix it. We believe that he is in good hands with Dr Marx as he has done so much of this kind of surgery.

In addition, he has been under the constant (it seems at least weekly) care of a dentist for his teeth (mostly gone now on the bottom) and a local oral surgeon for his extractions and jaw problems. He regularly visits his ENT, who also keeps an eye on the jaw while addressing his recurring thrush problem. He completed 67 HBOT dives between Feb & July of 2010, and we hoped that this treatment might strengthen his jaw. It was too late to save any teeth.

Wow! You have been through unbelievable trials! You have a great spirit and are very generous with your time in helping others through their own trials! Thank you for your continued help for so many others on this forum!!

Anne

Connie,

My husband is going to the University of Miami for his surgery.

I have heard great things about Moffitt and know several people who have gone there for other types of cancer. All were highly impressed with the facility and doctors and very pleased with their treatment. Perhaps we will try to get there to see what they say.

Thanks for your input!

Anne

Anne, thanks for clarifying things for me. When you have time, please add some info for a signature. It helps make it easier to get to know you and also to answer your questions. Its located under the 'my stuff' tab, then profile. Scroll to the bottom and type what you want in the box. Dont worry about medical terms or anything technical, write what you feel is important.

Your husband must be in intense pain. Im surprised he isnt on the fentanyl patch. Its easier to use, only change it every 3 days and it gives a steady amount of medication. Then he could use the oxycodone for any breakthru pain. Ask his doc about this.

The surgery you described is how mine was supposed to go. With using a tiny amount of muscle/skin taken from my wrist area. Unfortunately, my first operation failed and had to be redone. It sounds like this shouldnt be happening with what the surgeon has planned for your husband. He is really is very fortunate with this operation. Im sure he probably cant see how lucky he is due to being in so much pain, but he really is very very lucky. It seems like he should be home and recovering in no time. It sounds like his doctors are on the ball and on top of everything. I might have to take a trip to FL to see this doc.

Ive done a total of 125 HBO on 3 seperate times between April 2008 and Feb 2010. They helped me so much. Sorry that it was too late for it to work for your husband.

I wish the best of luck to your husband with this.

Christine,

You are right...it seems that my husband is fortunate that the extent of his planned surgery is much less than others have undergone. We have been told that they expect him to stay in the hospital for only one or two nights.

He is focusing on getting his weight up in advance of surgery and it seems to be working. His local oral surgeon told him that in addition to adding calories, he should increase his intake of protein, iron and vitamin C to prepare for surgery.

We are feeling pretty good realizing that this is probably one of the less complicated surgeries on their schedule and that he will be physically prepared. As long as there is no infection flare up, he should be in good shape.

We will ask his pain management doctor about the patch when we see him next week.

I added some details to my signature, as you suggested.

Thanks again for your information and concern!

Anne

Update...

Hooray!! My husband's surgery was moved up to Dec 20, because he had a bad infection flare up in the dead jawbone and only surgery would clear it up. Fortunately, they were able to fit him in on the next surgical day after I called them.

His surgery took 4 1/2 hours. They had to take a little more bone than originally thought. They took about 2/3 of the left side of his mandible starting from under his ear. His new titanium plate is longer than that and runs from just below his ear around to the other side of his chin. The added length gives more strength and stability to the plate. He has an incision on his neck from his chin to his ear. He had an advancement flap, and no grafting.

He looks great! His chin area is slightly swollen, but his face looks totally normal otherwise, with no bruising or cuts. Actually, it looks like he had a bit of a face lift in the process...an amusing, but totally unimportant, side benefit!

The pain from the osteoradionecrosis is gone, for the first time in years. He is sore from the surgery itself, but that will be over in another week or so.

So far, it looks like this is a successful surgery with a good outcome. A new, pain free jaw is a great Christmas present!!

Anne, how wonderful!!!!! I loved your post!!!! It goes to show people facing this kind of surgery that it can be a simple procedure. Everyone is different and some have a hard time while others are much luckier. Congrats to your husband for doing so well. Happy Holidays to you and your family

What a wonderful Christmas present for you both and don't know knock the face lift part. That can bring a big boost to spirit also. Here's to A Merry Christmas and a quick recovery.

Take care,
Eileen

Great news about your husband's surgery. So happy that he is home and recovering. My husband also had a mandibulectomy for ORN and I know how painful that was. I wish you both well as he continues to heal. Merry Christmas!

Well, things aren't going as planned (do they ever?)

The surgery appeared to go well and recovery was going well for 9 days until infection set in. Now, Harry is back in the hospital with IV antibiotics and an NG feeding tube. The is a "hole" under his tongue which has not healed and allows anything he puts in his mouth to run out the incision in his neck.

They expect that they will probably have to remove the titanium plate and let things heal up for 4 months or so before putting the plate back in again. The decision will be made on Wed when Dr Marx returns.

Any thoughts on things I need to cover with them on Wed?

If this happens, I think he should have a peg tube for the interim, as he is down about as low as he could safely go with his weight.

Any input from those who have been through this (especially you, Christine!) would be greatly appreciated.

Thanks! Anne

Oh gosh Anne, I am sorry to read this. Harry must be so devastated by the success then a complete turn around. I am so sorry he is going thru this!!! At least he is not in pain from the osteoradionecrosis any longer, that pain is excruciating!

Please remember we are all different. I went thru something similar when I had my jaw surgery. But the difference was my free flap failed while I was still in the medically induced coma. I slept right thru the whole thing. The second surgery wasnt an easy one working on not just a radiated area but also a place that just had a major operation. Somehow I picked up MRSA and ended up staying in the hospital for 2 months. I did have a feeding tube put in when I had the first surgery.

When the docs did my second surgery, the metal jaw was removed. My ENT reviewed the options with me and advised against trying to redo the original surgery and put in another metal jaw. He said I could also use my leg bone or a cadaver bone. He warned me of the high risk of failure that I ran if I would retry it. He said he didnt think I was physically strong enough to get thru another attempt. I chose to stay like I was and recently had some reconstructive surgery which has helped. It was pretty minor compared to the others. Ive come to terms with how I look and enjoy my life how it is now. It took a while for me to regain my strength and to mentally handle my situation.

The best thing you can do for your husband is to be by his side. Harry may not even remember alot of this time. I couldnt remember my son coming to see me but he sat there every single day. He would remind me of what we talked about then I could remember his visit. My son helped me to walk the halls every day to help me get stronger. So just be there with him and talk to him so he doesnt feel so alone. If he is allowed to walk that will help him to keep up his strength. Check with his doctors to see if he is allowed to go on assisted walks around the floor he is on. This also breaks up the day for him so he isnt so bored.

Dont be surprised if the swelling takes a couple of months to subside. Most doctors will make you wait for a year before they do any reconstructive surgery. I begged my docs but they kept telling me no. The area must heal before they try any reconstruction. Also dont be shocked if he physically looks different. Not just from the swelling, the surgery could leave him disfigured. Make sure you speak to the doc about what you should expect. I know to you it isnt important but to Harry this can be very difficult.

I see your husband already did HBO, he could need more. Thats how I ended up doing so many, I had a tunnel that ran along my cheekbone to a hole under my ear. It just wouldnt close. It took about 10 or 11 months for that wound to close. All wounds must heal from the inside out. Harry's wound sounds like it is very deep. Surgery will close it. I had IV antibiotics with the picc line for 9 months. That is unusual but dont be surprised if Harry comes home from the hospital with the picc line.

I would ask for a peg tube too as long as Harry is ok with this. It could be a few weeks to a couple months before he has recovered enough to eat again. The NG tube is more of a shorter term item. Make sure you ask the doc his estimate of recovery time. That will determine if he really will need a peg tube. If he needs a trach, ask for a possey muir valve. It will allow him to talk while it is in.

Try your best to help Harry keep his spirits up. This could be a challenge. I havent been a caregiver so dont have any ideas about how to do this. Caregivers are such special people! Make sure you take care of yourself thru all of this. Its important to get your proper rest and nutrition too! I hope I havent scared you about this. Its so much better to be prepared going into this than getting a shock later. If I missed anything or you have further questions please just ask.

Thank you, Christine for all the good informstion. You are very generous with your time in helping others!

Physically, Harry is doing better. He is getting good nutrition with the ng tube, so he is stronger. He went walking around the floor today at a pretty good clip. The swelling is way down. His neck incision is looking very good. Too bad that they will likely be cutting again. They said that they might want to get the plate out from inside his mouth, because they want to avoid further risk to his one open carotid artery (the other side closed without incident a few years ago.) But, we will have to talk about that in more detail.

Mentally, he is becoming more accepting of the idea that he will likely need more surgery and that it won't be pleasant. But, he said that he wants to be sure that it is used only as the last resort. We will have lots of questions for the main guy on Wed.

I know that my role as a caretaker is especially important in the hospital. Yesterday, I had to fight to get the feeding tube approved so they could start the feedings. They tried to tell me that the feedings would have to wait for another day because the radiologist had gone home and the network link to the affiliate hospital was down, so they couldn't verify the proper placement of the tube. I refused to accept that the feedings would wait for another day. I told them that, if necessary, I would personally drive the film to the affiliate hospital. Shortly thereafter, they figured out a way to share the picture. They had to make an adjustment to the tube and, finally, they were able to start the feeding.

Then, the hospitalist doctor was allowing his blood pressure to go way too high. He had three successive high readings (each over 185). Each was reported to the doctor and each time he said that it was okay. When the next reading was 208, I told the night nurse that I wanted to talk to that doctor if he refused to prescribe something again. She handled the problem herself by telling him that she was responsible for this patient and she needed him to prescribe some medication NOW. Good for her! Since then, it has been back under good control.

Today, I had to press for hours to get his room changed so he could get away from the roomate who was constantly on the phone, talking incessantly for 18 hours a day.

Harry likes it when I advocate for him. I think it makes him feel that he is cared for. He tells me that he appreciates these efforts because he couldn't possibly handle them himself.

By the way, I will be discussing these incidents with the hospital. What would happen to a person who doesn't have a caretaker watching out for them?!

Thanks again for your caring and your help.

Anne

Good for you, Anne! Kudos for being your hubby's voice. Being a caregiver sure tests our abilities. I sometimes think I could run a company with the negotiation and advocacy skills I learned while caring for my husband. It is amazing what we can accomplish. And our involvement does help banish some of the fear our loved ones experience because they know someone is in their corner looking out for them. I love being my husband's caregiver. He doesn't need me in the way he did but we still approach this as a team. Harry is a lucky man to have you caring for him.

All my best-
Anita

Anne, Im glad to read that things are slightly improved for both you and Harry. Good for you for standing up for your husband! Every patient needs an advocate who will push the staff to do their jobs. The blood pressure issue is something that shouldnt be played around with. Good thing you were there and had a good nurse.

Ive had way too many problems while I was hospitalized. Never had a problem while my son was there. I had alot of young nurses who would come take care of me when he was there. Only a few times he had to round them up for me.

With proper nutrition and hydration it will help Harry to feel better. He must be doing better if he is walking the halls with you. That will help him more than you realize. It will work him muscles instead of letting them atrophy just lying in bed. It will make him feel less helpless. So glad that Harry is up and able to take a stroll with you.

The hospital I go to has only single rooms in their newer wing. Several times Ive stayed in the new part so I forget about the roommate situation. Glad you were able to get him moved. Some people can be so inconsiderate.

Anita is right, Harry is lucky to have you as his caregiver. You are doing a great job!

Thought I would update this ongoing saga...

Harry came home from the hospital after a week long stay. The decision was to forgo surgery for the time being and see if the infection and wound can heal with IV antibiotics for four weeks, followed by oral antibiotics for an undetermined time.

As you predicted, Christine, he now has a picc line. He is on an IV pump and a nurse comes once a day to refill it. They taught me how to disconnect the IV line between infusions, so he isn't tethered to the pump all the time. I have to be sure the connections are kept as sterile as possible and the IV line is flushed every time he disconnects.

He is not allowed to put anything in his mouth except water and pills until the hole in his mouth closes. So, he also had a peg tube put in last week. This is his second time on a peg. We are happy to have it so he can maintain good nutrition. His gastroenterologist told us tonight to add MCT (medium chain triglycerides) to his Ensure to help him to regain the lost weight.

The home health nurse got a very low blood pressure reading this morning, which was unusual for him. He had just been standing for awhile. She did some further readings while he sat, and then while he stood, and she found that he has orthostatic hypotension, which is greatly lowered blood pressure while standing. The gastroenterologist advised us to add a very small amount of salt to his Ensure to help with that. Of course, we will have to alert his cardiologist.

We went to the HBO doctor today to see about having more HBO treatment, as the Oral Surgeon thought that further HBO treatments might help with the hole closing. We have to wait to see if this will be approved by Medicare, because he has already had a number of HBO treatments.

In the meantime, his jaw is red and very sore. Before the surgery, he had infection, pain and a broken jaw. Now, he had infection, pain and a hole in his mouth. So far, he traded a broken jaw for a hole. It is discouraging because we were expecting a better trade than this. But, hopefully, the hole will close up and the infection will go away with some more time. If not, the only other option is more surgery, which both the doctors and patient want to avoid.

I re-read your posts, Anita and Christine, about your experiences and they give me some hope that this will eventually work out in the end.

On and on it goes!

Anne

Thought that I would post an update...Things ARE getting better.

Harry had a bout of aspiration pneumonia last week, but that was quickly controlled. Picc line was taken out last week and two antibiotics are now taken orally. (Well, not exactly orally, but via peg tube.) Hyperbaric treatments are proceeding and the multiplace chamber is much more comfortable and less intimidating than the monoplace chamber used last year.

The best news is that the hole in Harry's mouth is 2/3 closed and the oral surgeon expects that it will fully close soon. Oral antibiotics will be discontinued in another two weeks and then we will cross our fingers and hope that no infection flares up. Still no eating until the end of March at the earliest. Pain is getting better.

Things are looking up! He may avoid more surgery after all!

Im so glad to ready your post. Its so encouraging to read of someone who has done a complete turn around. Best wishes for continued recovery!

I thought that I should write up "the rest of the story", in case anyone in the future reads this saga when they are facing the same issues that Harry did.

The treatment plan worked beautifully. No further surgery was needed. The infection was cured and the hole in Harry's mouth closed up. He was discharged from the oral surgeon's care in late March, with a follow up in 6 months. He no longer takes any pain medication (a little tough for several days while he got off the pain meds).

There is no visible scar on his neck. His jaw looks perfectly normal. You could never tell by looking at him that a bone is missing and there is an implant in there. The hyperbaric treatments took care of the wrinkles on his face, so at age 81, he now has a fully smooth face! The VA doctor commented on his wrinkle free face just today. He has regained all of the weight he lost (15 pounds). He has great energy and no pain. He looks better than he has in years and feels better too!

Eating is still a problem, so he continues with feedings via peg tube, while trying to eat some food by mouth.

We have started to travel again and have a full summer travel schedule planned. We just got back from a week in Ireland (taking his Ensure with us). Had a great time. Harry's plan is to keep going as far and as fast as he can, as long as he is able to go. He advises all his friends to do the same.

We are very pleased with the final result of this surgery and wish equally good luck to others who have to go through this ordeal!

Anne, thank you for coming back with such wonderful news!!!! Your post is what gives people hope when things look bleak. Your husband went thru so much! You had your work cut out for you as his advocate. I went back and reread what his struggles were. I am so pleased that HBO has helped him to heal. Whenever I have done it, I have always felt so much better. Thank you for letting us know about his recovery and what a difficult road he traveled. Please try not to be a stranger.

Wishing both of you continued good health and happy trails