I would really like to know more about your surgery on your jaw. I am due to have my left jaw replaced with my left fibula and I am terrified I am only 43 so this is really scary. I'd appreciate any input from anyone that has gone thru this.

Thank you.

Welcome to OCF! You are in the best place to get info and support to help you get thru your upcoming surgery. Ive sent you private messages (PM's). Please click on the tiny flashing envelope next to your My Stuff tab above.

I have had the surgery you described. Its not easy, but many have been thru it successfully. Best thing you can do is to be treated by a very experienced surgeon. You should also seek out a second opinion preferably at a Comprehensive Cancer Center (CCC). Thats where all the specialists work together using a team based approach for each individual patient.

Every patient is different and will respond in their own unique way to everything. The surgery is a long one, usually 8-11+ hours. Of course this would depend on each patient, Stage, tumor location, other health complications, etc. One very good thing is being young, its a huge benefit for you! That means you should bounce back quicker than someone older who has other health concerns. Expect to be in the hospital at least one week, usually most are in for about 2 weeks.

Make sure your physician manages your pain by prescribing 2 different pain meds. When you wake up you are likely to be pretty sore. With 2 pain meds you will never have to suffer in pain waiting until its the right time to get your next dose of pain meds. You can switch off and on so your pain is always managed.

You likely will not be able to speak very clearly when you wake up. You probably will have a trach too. Ask for a possey muir valve trach so when you are able to talk you should be able to do so with that type of trach. If you dont ask for it you probably will not get that kind. Take a dry erase board with markers, have someone bring you your cell and if you have one your ipad. Download and practice using an app called Speak It. This will do your talking for you by saying whatever you type in. I had a close friend who lost her ability to speak and strictly used Speak It as her voice so I know it works very well.

Try to have someone stay with you as much as possible even if you are kept asleep for the first couple days. Hospital staff will be in and out of your room 24/7 without regard for the time of day or night. They will also likely walk into to your room talking to you, expecting answers until they read your chart and see you arent able to talk well yet. You should have someone there to be your advocate to talk for you when you arent up to it. Try to round up a few people who can take turns sitting with you while your in the hospital. You should have some helpers for at home when you are able to go home too. Make a list of everyone who offers their assistance. Tell them when the time comes you will let them know what they can do to help. I was not able to eat but dont you know, the kitchen still sent me a full tray every meal for weeks no matter how many times I told them to stop sending unwanted food trays. Things like that can get annoying when you arent feeling well. Having family and/or friends around will help you avoid things like kitchen error and chatty hospital staff.

You will have drains and have swelling that may be uncomfortable. Both are temporary. Just remember no patient ever thinks they get well quickly enough. Swelling can take months to completely subside. Its a very big surgery and will have a long recovery time. Seek out all the specialists you can to help you get back to your old self. The faster you get PT and speech therapy, the quicker you will get back to normal.

Ask your surgeon if they take frozen sections. You want to ensure you will only have to go thru this major surgery once, that your surgeons will eliminate all the cancer with wide clear margins. Did your doctor have any other treatment (like radiation) planned for down the road? When is your surgery planned for?

Best thing you can do is to read here and the main OCF site to help educate yourself about your illness. An informed patient is a strong advocate for themselves. Before you have any treatments get a full blood workup done including thyroid and testosterone if you are male. You can easily have this done before your surgery, getting these baseline numbers later may not be an option. I know Ive given you tons of info but its really just the tip of the iceberg. A mandibulectomy (jaw removal surgery) is very involved and an intricate surgery. Hope I havent overwhelmed you with too much info.

Hang in there! You're among friends who understand where you are coming from. Best wishes!!!

Main OCF site...Understanding section, diagnosis, treatment, etc

Thank you for your information I appreciate the help with the type of trach, I already have a feeding tube and have had one for years. I don't have active cancer anymore my left jaw has ORN and had Osteomyelitis in it earlier this year, I am on 2 kinds of pain meds now and I am familiar with a pain pump I have had that before. My surgery was scheduled for Nov 17th at the U of M but my jaw is deteriorating so rapidly I can't open my mouth at all and my jaw is bleeding and clotting inside my mouth so I am in danger of asphyxia. I believe the surgery will probably happen faster now. I am seeing my surgeon on Thursday morning to discuss what to do next. When u say two types of pain meds in the hospital could you give me an example?

Also did you have your entire side of your jaw removed? How far up do the go? and did you have alot of your Hair shaved off? Did they send you to a rehab unit after to stay in that's what they said they were gonna do for me.

Jgaflac,

Just to add what Christine already said, I had this surgery, mandibulectomy with a fibula free flap, for ORN in September 2016. I had two areas, the ramus and body of the mandible being replaced. There was talk about using the scapula due to difficulty walking, but I opted for the fibula being its the workhorse used for this surgery, and is less bulky for my areas.

Before my surgery, I had a MRA of the legs to check the vessels if they were good enough to be used. They also asked what your shoe size was because you will need a leg boot for a while to take some of the weight off the leg where the fibula is removed. Also, due to the amount of radiation, and prior surgeries I had, I'm vessel depleted in my left neck, so there isn't anything to attach the Fibular to. As such, they took the internal mammary artery and vein by cutting through the ribs, and attached them to the fibula for blood supply, and used the calf tissue for a skin paddle to close the neck due to the fibrosis already present. This can happen in prior radiated patients too where the vessels are too compromised.

The surgery was 8 hours done by my ENT, who did 3 of my other surgeries, and a Plastic Surgeon. I hardly recall being in recovery, but what little communication I had was difficult, had a trache, and even though I had asked if they were going to have a writing board beforehand they didn't, plus I was alone my entire stay. Somehow I managed to get across I would like a writing board, and that was pretty difficult to use and make sense anyway. I did have ispeak on my iPhone, but I didn't have my personal bag yet, and when I did have it the next day, my vision was so off I didn't use it, then it wasn't needed.

My ENT said they didn't like to put patients in ICU, and was in the step down unit, like my other surgeries, for 6 days. Somehow my writing board was misplaced during the transfer to step down, and had fun doing sign language to get one. During my stay, they checked flap with a small ultra/sound for blood flow, my leg too i believe every hour. They liked to keep you warm too for healing too.

About the 3rd day they had you out of bed sitting in a chair. The trache, which had a humidifier attached, was taken out about the 4th day, and so was the nasal tube since I no longer had a peg feeding tube to use. About that time, my ENT put in a hands free speaking valve in too, which was removed that week, and was eating soft food about that time too.

There were no plans to go into rehab, but I was already physically impaired, and didn't want to burden my mother 81 year old mother, so I did go into rehab for 2 months, which I probably needed even before my surgery.

The trache stoma was slow in closing, probably due to prior radiation, It took a month to finally close, so that needed constant attention,covering when speaking, and somehow was leaking food, possibly aspiration or a fistula.

I probably had the boot more than necessary since it was used more to protect my donor leg site, which had healing trouble for 6 months, and needed contestant care. A re-graft, pinch graft, was taken from the groin to cover the leg donor site. The thigh graft site used to close the donor site seemed to heal accordingly, but it takes a while.

About 3 months I had PET/CT, I was due for one, instead of just a CT to check the jaw bone integration.

The jaw bone and rib cage have titanium plates. It wasn't until the winter that I had severe jaw pain, which I found out can happen with the metal plates, so I look like a ninja when I walk outside for any length of time.

I was going to have reconstruction for my mouth since the jaw nerve is cut during surgery, and debulking the neck with the calf tissue, in August, almost a year out, but was canceled because I have to be on blood thinners for a year due to a heart attack in June with a stent.

I hope this helps, and good luck.

Thank you for replying just a couple quick questions if you don't mind. I am having the entire left side of my jaw replaced and I am not sure of the terms so was it just parts of your jaw or a whole side? Also how was your pain controlled? I am glad to hear the trach was taken out so fast. Thats what I hope for me too. I am sorry you had a heart attack I wish you a speedy recovery

Just remember... everybody's different so what you see here may not apply to your situation. I cant really comment much on my aftercare as my case wasnt the norm. I was in the burn unit and then ICU after my surgery. I think I was told the burn unit was for more constant care and attention to wounds, germs, etc.

I did not lose any hair. My doc took half of my lower jaw from the center of my chin all the way back to the TMJ area. My mandibulectomy was due to having cancer in my jawbone so which was the third time I had OC in 3 years. My docs took extra wide margins to make certain there would not be any cancer missed.

From what Ive heard from others, hair loss was not part of this surgery. Many who have had a piece of their leg bone relocated to their jaw report their leg being the most uncomfortable or even painful part of it. You may need PT to help get you back on your feet. Those who have had a mandibulectomy due to ORN, go thru the same thing as those who have the surgery to remove cancer.

Best wishes!!!

I had what is called a segmental mandibulectomy, aka Full Thickness, of the jaw bone whereby the sectio. is cut out. I guess each situation is differen as to the extent since there are many parts of the jaw, but the ramus and body makes a large part of the mandible. It must have included the "angle" too since that's in between these two structures.

I was probably on morphine in the hospital, and Percocet thereafter. Pain was minimal.

I've also had a cervical approach for surgery where access was gained from the outside instead of interorally.

A few weeks before surgery, I had a Ct scan. I think my ENT uses a 3D model of the jaw to plan surgery.

Maybe ask your doctors what sections are planned on being removed, how the jaw is being accessed. I also had no teeth from prior surgery. Some get implants during this surgery, but that can depend on a number of factors, including amount of radiation, which already caused ORN, but it's new bone, so it may be possible in some cases.

Thanks Christine, my jaw is being removed because of ORN and the fact it's close to fracturing in on itself and because the pain is so severe and my mouth doesn't even open anymore. This has worsened over the last couple weeks so I am seeing my Otolaryngologist Oncologist on Thursday. I wonder what the difference between Otoloaryngology and ENT is? I know OTO is head and neck anyway thank you for your information . I need to get more information as to how much of my jaw they are taking I know as of now they weren't sure how much of my jaw they had to take. I guess I will no more after the scans. I am on alot of pain medication now because it is so severe so I am worried about how they are going to handle it post op.

The scans will help your doctor determine how big of an area is affected by ORN. Dont be surprised if your doc isnt able to give you exact info about how much if your jaw will be removed. The surgeon will know exactly what must be removed when they operate and can see how much has been affected.

As long as your doc understands how severe your pain is at this time, they should be able to manage it after the surgery. By having 2 different meds it will enable you to alternate between the 2 meds so you wont have to wait until its the correct time for your next dose of pain meds. You may be surprised at how much better you feel once the bad part of your jaw has been taken out. Ive heard ORN can cause excruciating pain. When I had my teeth removed in early 2009, I was surprised at how much a teeny tiny shard of a tooth could hurt. It was very small but when it was poking out of my gums, I was in agony. Once the doctor pulled the tiny piece of tooth out, I felt instant relief from the pain. You may have a similar experience after the ORN is removed.