My oral surgeon has referred me to Dr. Marx in Miami for a resection and reconstruction of my left mandible. I had 2 molars pulled in Dec '10 and a bicuspid pulled last week. Now the scan shows continuing bone necrosis hence the referral to Dr. Marx. Has anyone had this surgery? What I am reading sounds scary! I would love to correspond with someone who has gone through this and could give me some guidance.
Thanks
Hi Richard! Are you an oral cancer patient? Did you have radiation? What about hyperbaric oxygen treatments for having teeth removed?
I have had my left jaw removed due to having oral cancer. My experiences are much different than someone who does not have oral cancer or done radiation. I had complications due to having radiation. It is not an easy surgery if you are a cancer patient.
If you have specific questions, there are a few of us here who have gone thru a mandibulectomy.
Hi Christine;
Yes, I am a survivor of cancer of the head/neck of unknown primary site. I received radiation (33) and cisplatin (4) in 2006. Had extraction of two molars last year followed by 30 HBO dives. Now have recurrence of ORN and am facing mandibulectomy. Specifically, I was wondering what the future holds for me. How long will I be off work? I am a nurse and have to be able to communicate verbally for my job. Also, I have specific questions about the reconstruction using rhBMP-2 instead of a free bone flap. I will be making trips form Illinois to Miami for this surgery and am not looking forward to flying with a bunch of hardware sticking out of my face.
I am very happy to have found this resource.
Rich
When having teeth pulled your dentist or oral surgeon should be following whats called the Marx Protocol. It is where you have 20 HBO dives prior to having teeth removed and 10 immediately afterwards. Sometimes a patient who already has undergone radiation will have a few more afterwards, like 20 instead of the 10. It is to prevent ORN.
A mandibulectomy is no walk in the park. Of course every single person is different with their reactions to procedures and medications, etc. I had a very difficult time but that was just me. I usually see mandibulectomy patients spend somewhere from 10 days to 2 or 3 weeks in the hospital. Speech isnt affected as much as your would think. Ask for a possey muir valve on your trach so you will be able to talk easily. Swelling takes a very long time to recede. It will be a full year before a doctor will do any reconstructive work. Most plastic surgeons do not like to come into things in the middle so if you are traveling for this surgery be prepared to do any follow up surgeries there as well. I would doubt there will be any hardware sticking out of your face.
If I had to give a good guess about length of time a person would be incapacitated due to having a mandibulectomy I would say a minimum of 3 months. I really hate to say it but you could be out of work for a very long time with this operation. Going into something major like this you really cant predict how quickly you will recover. Alot depends on your age and health and if there are any complications with the surgery. Having surgery in an area that has undergone radiation is bound to have some challenges with healing. Dont be surprised if you need further HBO.
What is rhBMP-2? Is this the titanium bar? I had that done and unfortunately my body rejected the metal and the surgery had to be redone. Even though everyone is different, I have seen others have similar problems with this. I know it doesnt sound like it would be better using a piece of your leg bone but in my opinion, it works better. Some doctors even use cadaver bones for this procedure. Ive heard this works very well.
This type of surgery calls for alot of planning so it doesnt disrupt everything in your life. I prepared for being sick for only 2 months. I ended up being in the hospital for 2 months. My recovery was a very long and difficult one. It took me about a year to bounce back but I had many complications that most do not. I am hoping that your surgery is not nearly as involved as mine was and it will be a quick recovery for you.
Hello Rich!
Welcome to OCF, glad you found us, sorry you had to brotha! As Christine has said, there are several of us on these forums who have undergone the mandiblectomy and those I know have had vastly different results due to different circumstances in our care.
As a nurse you know that people are different, circumstances are different, surgeons are different. Even when surgeons are the same it doesn't mean a person should expect similar results. There is a forum member here that has shared the same surgery (rt mandiblectomy w fibula flap/Neck dissection) at the same hospital (UWMC) and the same surgeon as myself and we both had vastly different results.
As you know this is a big surgery and the recovery from it can be tough and there is a very long list of complications, any one of them can vastly affect your recovery. Time frames are a tough thing to call. My jaw was wired for probably 2 months, the swelling was really bad. My surgery had other complications that made total recovery impossible.
Esikon (Elizabeth) also had a mandiblectomy, she's also a nurse, and she looks fantastic. She maybe a better resource for insight then I would be. I've PM'd her and asked her to respond to your post.
Good luck, don't let the "what ifs" freak you out, just take it one step at a time.
Eric
Below are some articles I found on the rhBMP-2 procedure, it's a newer procedure, most of the literature I found was in the last three years. The last link was written of a study done by some of the U of WA folks (UWMC) which is a top ENT facility in the US (12th).
The procedure involves a mesh collegen sponge implanted in the area of the resection either with or without marrow transplanted from another area of the body. From what I've been reading it does have favorable results from the limited information I've been able to find. I don't believe I've seen anyone on these forums that has had this done and am unfamiliar with it.
http://www.ncbi.nlm.nih.gov/pubmed/18355584http://www.ncbi.nlm.nih.gov/pubmed/16525283http://mauioralsurgery.com/maui_oral_surgery_img/rhBMP-2.pdf
EricS and ChristineB;
Thank you both so much for your replies. As you can, no doubt, understand, I am quite apprenhensive about this impending surgery. Knowledge is power for me. The studies that EricS cited were encouraging. ChristineB, from your advice I plan on receiving a 2nd opinion from a surgeon that is a little closer to me so as to make possible follow-up surgeries easier on me and my family.
This is truly a great resource and I will keep everyone posted.
Thanks
Im happy to be of help to you. It is a big operation and you want to know all the ins and outs before committing. Especially in your situation of traveling a great distance for a big surgery.
My situation and Eric's are both very different as is Elizabeth's. I know several others who have sailed right thru it. I had cancer in my jawbone that the doctor had to remove so its probably alot different than having a mandibulectomy due to ORN. I hope your ORN is easily taken care of and you are not in alot of pain.
Please let me know if you have any other questions that I can help you with.
Sorry I'm so late!
Hi Richard, welcome to OCF! I too had a madibulectomy of my right lower jaw. As you can see, there is no correct answer we can give you as to how you will bounce back from this surgery. It is a hard and long surgery to recover from. Some of us have side effects that the others don't have such a hard time with.
I spent about 2.5 weeks post surgery in the hospital, I had a minor complication (abcess formed in my neck) and had to go back under the knife other than that I think I would have been out a week sooner. I would say you definately need some time recovering and healing, 3 months as Christine suggested might be doable, just depends.
For me, I was also an Oncology Nurse and speech plays an important role when trying to verify telephone orders with drs. My speech has been slightly altered, most can understand me but I do have to repeat myself alot. I had half of the base of my tongue removed and failed all my swallow tests so I had to be on a PEG tube for 18months post surgery. Due to all this, I lost 70lbs. I now can eat pretty normal (2 years later) as long as it's not spicy. I'm a little weirder in that I can't swallow thin liquids, I have to thicken everything up with a product in order to drink. It also takes me about 2-3 times as long to eat depending on what it is that I am eating. As a nurse, you know sometimes you barely have time to go to the bathroom much less eat in between patients.
So the fact that my speech was altered, I had chronic fatigue (no way I could pull my previous 12-14hr shifts), have eating/drinking issues, and for the pure fact that life had new meaning to me, I decided that I would have to give up nursing. I wanted to be with my young kids instead and enjoy life with my family. I will hopefully someday go back to nursing but it will have to be a different setting, not a hospital.
You situation may be different than ours, I hope you breeze right on through it and are back to work in no time! I do recommend getting a 2nd opinion. I live in San Antonio and have to commute to Houston for my appts but during that time of treatment, I stayed in Houston because you are making frequent follow up visits.
If you have any other questions please feel free to ask away--that's what we are here for!
Good luck to you~
Hi Richard,
I just happened to check on this board today because my husband went to see Dr Marx today for a follow up. Dr Marx's team (under his direct, constant supervision) performed a partial (half) mandible resection for him 11 months ago. He had a titanium implant, rather than a bone graft, so his procedure had some differences from what you are probably looking at.
I just want to reassure you that Dr Marx is a real gem. Not only is he tops in his field, and has an incredible amount of experience with your particular situation, but he is also a very caring man who is totally dedicated to his patients. He will see you as a PERSON, not a jaw, and discuss options, outcomes and anything else on your mind. The distance is very unfortunate, but if you come for a consultation with Dr Marx, you should talk to him about that. Perhaps he might know of a surgeon closer to you who might be able to do the surgery, or who would at least be able to do the follow up work. (We live in Ft Lauderdale, which is about an hour away from Dr Marx.)
When my husband first saw Dr Marx, he suggested that the surgery be done in the next few months, when it could be planned, rather than wait until it became an emergency. My husband chose to wait. He later regretted that decision, as his jaw eventually broke and he suffered with constant terrible pain and recurring infections while he waited for a month to be able to have the surgery. It would have been better to to have the surgery earlier and according to a plan.
You are right that the surgery is scary. The recovery isn't easy. My husband has some lingering deficits, primarily eating difficulties, but he feels better than he has in the seven years since his diagnosis. You cannot tell that he had the surgery by his appearance or speech. For him, the surgery was well worth it.
I hope that things go as well as possible for you. If you can get to see Dr Marx, I think that you will find the effort worthwhile.
AVW,
Thank you so much for your input. The information that you provided really went a long way towards easing my concerns and fears. There really is no substitute for the experience that someone who has gone down the road before can bring. I see Dr. Marx on November 29th for an intital consultation.
Please give your husband my warmest wishes for continuing his wonderful recovery.
Elisabeth,
Thank you for the information. This board is really a Godsend. The more that I live with this idea of a mandibulectomy and the more I read the stories of the members of this forum the more comfortable I become.
Richard,
Just a few thoughts before your visit with Dr Marx:
1. There may be a long wait in the waiting room. Come prepared with a good book. Last week, we waited for 2 1/2 hours...the longest wait ever. One hour is usual. The volunteer who took us to an exam room apologized for the wait. She said it was because they had a very high proportion of new patients that day and they always take longer. Of course, I don't mind waiting for this reason. I am just happy that they give new patients all the time they need.
2. Don't be alarmed if the waiting room is very full. You aren't waiting for that many patients before you. It seems that most people come with at least one companion and I have seen as many as 4 people waiting with one patient. Also, there are other doctors using this waiting room.
3. Write down every question that comes to mind before your visit, so you don't forget to ask. They are very patient as you check your list to be sure that everything was covered.
Good luck and safe travels!
I can't believe how lucky I am to finally get in contact with others who have gone through reconstructive jaw surgery. On February 7th I celebrated my 8th anniversary of being cancer free. Unfortunately I went ahead and had follow up radiation therapy even though my surgeon at the Mayo Clinic Scottsdale didn't think it was necessary. Unfortunately the treatment resulted in radioneucrosis of the lower right jaw. I have little or no pain but have had a subcrutaneous fistula draining from under my chin . I cover it with a small piece of guaze which collects the drainage. My teeth are not loose, in fact none of my doctors can believe how stable they are considering the amount of deterioration there is of the bone. I have been told by Dr. Hayden at Mayo that it is not a matter of IF the bone will break, it's a matter of WHEN. Like I said that was eight years ago. I did take twenty-one dives but that didn't have any impact. I'm feeling a little pressure now because my only daughter is getting married in September and I dread the fact that I might miss my chance of being father of the bride! So I'm considering going ahead with the surgery in hopes of being back to normal by then, yet some of the accounts I've read today make me think otherwise. Any comments or advice would be greatly appreciated. Please don't hesitate to contact me through my email address which is Thanks in advance, Tom
Tom, have you considered having more HBO? Sometimes it takes more than 21 to heal. The first time I did HBO, my doc kept extending my treatments. I was making progress but very slowly. I think it took me 60 dives before I healed from the surgery for my 2nd round of oral cancer.
Everyone is different with this. I struggled while Ive seen others sail right thru it. A mandibulectomy is a major surgery. It is very delicate with the surgeon connecting teeny tiny blood vessels. I hope you carefully consider all your options. If it were me, I would try more HBO hoping that would help the jaw. If you put off the surgery your jaw will only be in worse shape and harder to fix.
Here is a link that details what I went thru. Just remember not everyone goes thru such difficulties. It was the 3rd time I had cancer in 3 years so my body was not strong going into it.
ChristineB's mandibulectomy
Thanks so much for the information. I just got back from the doctor who thinks we can wait until my daughters wedding is over in September. That took some stress off!
I just had to put in our 2 cents. First, I admire your courage and strength! My husband went through similar treatment for STage IV SCC of Tonsil and was diagnosed with ORN with 9 months after treatment. He was 42 when diagnosed.
He had the jaw resection with flap done on 1/10/12. He had to have 2 docs in the room, one to do the titanium plate and one to do the tissue work.
He had most of his left jaw cut out, replaced by titanium plate and had a section of his chest muscle brought up to cover the titanium plate. The radiation had messed his skin up and he also needed a large piece of chest skin to add to the neck area.
He was in the hospital for one week and was told to take 2 weeks off of work. He had a PICC line and received antibiotic due to pseudomonas and staph infection for weeks. He was on Jevity via a feeding tube for a month or so. They did not wire his jaw shut, but was not allowed anything for 10 days in his mouth.
Today, he is feeding tube free, has 1 week left of antibiotic and has been at work for a few weeks. He is a Psychologist and Professor at Midwestern University. He also uses his voice and would be devastated if anything happened to it. He is almost back to PRE cancer mobility!
In short, I have to say, his story is uplifting. You can follow him here:
http://creativepsychological.com/thrivingit/Best to you and yours!! May you continue to soldier through this. Spend as much time loving, laughing and spending time with that family of yours! They need you as much as you need them!!
Blessings!
Brenda
Wow...this was a tough forum to read. I'm only 9 months from my last treatment and I'm doing ok. Obviously something like this can appear much later after treatment. I'm not sure I'd do what you folks did at my age (63). I hope I don't have to find out.
Tom, excellent news that you can put this off. Im glad that Brenda posted a link to her husbands ordeal with a mandibulectomy. He shows us that some people really are able to get thru this and return back to almost the same life pre-cancer.
bb, if the time would come for you to make this decision, Im sure you would continue thru like we have. I almost didnt go thru with it but my children needed me so I did it for them. There was no choice really, I am their only parent.