Please offer opinions if you have the time.
I am scheduled to have most of my jaw removed and replaced with one of the fibula from my leg. Dr. Carlson & Dr. Herbig at the University of Tenn. will be performing the operation. They seem competent. I will undergo 10 more Hyperbaric dives after the surgery.

Do any of you have experience with this procedure?
What should I expect?

Thanks for any comments.
Mark

Hi there - there are a few people here who've been through the same surgery. They will chime in I'm sure. I know its not an easy surgery since I've heard that from others. But if your surgeons are good, and the fact that they are using your own bone really helps then hopefully all will go well. The HBO is supposed to be great for healing! Just wanted to wish you luck and will turn you over to the experts! ;o) take care.

hello it looks likes you have already been through alot.
with jaw replacement you should be prepared not to be
able to walk for 2 months i was in very good physical
shape before surgery and i was very suprised of all the
strength it took to walk 50 feet with the aid of two nurses.
but now 2 years later my fibulia free leg is at 90%.
Ihope you fair as well Joe.

Mark, I am very sorry to hear you have to go thru a mandibulectomy. Dont worry, you have come to the right place to get info about it. I have had it done, twice. The operation is a long and involved one. Before I get into the info, always remember everyone is different and will respond in their own way to surgeries, medications and procedures. You can not rush your recovery, take it day by day or if necessary, hour by hour.

Expect to be in the hospital for 2 - 4 weeks. It could be even longer so be prepared for anything. most patients are there for about 2 weeks. Ask your docs for a POSSEY MUIR valve trach. That will enable you to talk easily with it in. It helped me alot! If you dont ask you wont get so speak up. Take a dry erase board just in case. Make sure you have someone stay close to you during your hospital stay so they can advocate for you. Dont be surprised if you are kept sedated for a couple days immediately after the surgery. Its a good thing to let your body rest.

The surgery is a rough one to recover from. Since you are going thru HBO, it will make your healing much faster. Try to prepare for a recovery of at least 3 months. It will take that long before you begin to feel better. Dont worry, your docs can give you pain meds to ease any discomfort. You will need physical therapy and possibly speech therapy. Dont put these things off or it will be harder to return to your regular self. Expect to wait for one full year before any reconstructive surgery can be done. It will take that long for the swelling to completely go away and for new tiny blood vessels to grow on their own. Not all mandibulectomy patients need to have reconstructive surgery.

Im a huge believer in positive thinking. I feel it helps you to recover faster. Try your best to keep a positive outlook. Think of this surgery as another step in becoming cancer free. Please fee free to ask any questions you may have about this. I will do my best to help guide you thru. Good luck!!!!!

christine b i am not sure how to address messages (re.air kitty)

If you want to respond to this thread by airkitty, just type in the white box and click submit. If you want to contact them privately that is called a private message or PM. Click on the person's name and a drop down menu will appear, click on private message and type away. That is only between you and that person, it is not anything anyone on the forum can see.


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Hi Mark - Dr Eric Carlson was my son's maxillofacial surgeon and I can tell you that he is very aggressive and is one of the very best. You are in good hands! That was five years ago and my son is doing just great now. He did not have your particular experience but I'm glad to see that others here have responded with experience similar to what you will be having. You will find lots of support and information from very experienced and compassionate people. If you need local info on the area or the UT Med Ctr, just send me a PM.

Thanks for the insights and encouragements. Christine - thank you for all of the good info. I will contact Dr. Carlson and request the special trach. I am scheduled to leave the hospital and go straight into an assisted living/rehab where PT & Speech Therapy are available. I have experience there with speech therapy. I learned to always have an advocate that is not medicated. My Wife and Mom will be with me to keep the staff in line. I remember as a young diabetic in a local hospital the nurses wanted to feed me then check my blood glucose then give me insulin. That order of events could have been very dangerous. Advocates if you want to live through a hospital visit. Joe - thanks for the support. Your time frames are what I am hoping for now. If I can ride my bicycle in two years then this procedure will be a success in my book. How did you sleep after the surgery (sitting up, on your back, etc...)? Did you have hyperbaric treatments?

Mark,

Ive had the procedure as well, what I will say is that everyone is going to be different and there are so many factors involved. I'm 3 years out and I'm very active but my leg is nowhere near 90%. Bike riding is doable and I even run bleachers, sprints and lift weights but that's been a long road.

A white board and advocates are wonderful suggestions as is the trach, I didn't have one set and should've looking back. I slept mostly sitting up or inclined. You sound like you're in good hands so keep a great attitude and I wish you the best of luck.

Eric

Hi, Mark,

My husband had the same procedure 11/09. He didn't need a trach but at the time was still on a PEG. That helped him keep up his nutrition requirements which are so important for healing. It's no picnic but was essential. His leg was very sore for months. He used a walker for a few weeks at home.

He has done well except for some post surgery infections. Everyone is different and you may not have that complication. He eventually had the titanium hardware removed because of infection.

There is some residual numbness around his mouth but he seems to managing that very well. Today, my husband and I are playing golf 4 times a week. We use a cart but there is still a lot of walking around.

My very best to you--
Anita

i have trouble with stomach acid so i always try to keep my head and back elevated imeadiatly after surgery they kept me elevated but no pillow because of blood circulation to the implant. my main current complaint is my ability to swallow .after surgery i did a cookey test . food with barium and they watch you swallow. I did very well with that.
But with radiation and no chemo. i lost some of my ability to swallow possibly because i didnt do the swallowing exersises.
For me the radiation was very painful the 5&6 weeks and i concentrated on the pain instead of the exersises.
i asked about the hyperbaric treatments and the docters said that i didnt need them at that time.i have had no trouble with any infections and no dental implants.

Thanks to you all for your support and advice. Six days until the surgery. I will check this thread from time to time so please keep the advice coming. Thanks again.
mark

Good luck! Will say prayers everything goes well!

The surgery, hospital time and recovery are very long but the results are amazing. For most of us who have had this reconstruction the worst part has been the long slow recovery to full use of the leg and complete reduction of swelling in the foot. On a practical level I recommend Crocs with thick socks as they cushion the foot, allow for swelling and are easily removed when you are not walking. I found that while using the walker it was easier to hold my leg up a little and hop on the good leg while using the walker for balance. Walking with a cane and after without was difficult for a while in parking garages as the floor sloped.

It is good that you are going to a rehab facility. While it is not as comfortable as home, it may be easier on all than having family members fixing food as your eating abilities improve and and running to the door for the various therapy specialists and visiting nurses.

For comfort, use as many pillows as possilbe to make yourself comfortable and elevate your leg. You may find that the soft "beanie baby" type or little baby/travel pillows are good for tucking here and there. I found that a lapboard was useful for writing and holding reading material and for use as a lap tray. Some have compartments to hold pens,etc. Several light blankets such as the drugstore travel type are better than heavy ones. Also when you get home make sure that you have a phone handy for a while so you don't have to get up for that.

My recovery nest was a two seater couch with full ottoman in my computer room. My husband set up a small eating station on the 2 drawer file cabinet with a picnic holder for disposable cups, silverware, napkins, small plates, sugar, etc. and left me with small apple sauces, water and other drinks. This gave me some independence until I was able to get around the kitchen on my own. (I was upstairs and found it tiring to go up and down for every meal and did not always have someone at home to help me between meals.) I used a skinny covered box meant to hold socks for holding medicines. This kept them organized and handy - nothing to drop where it would be difficult to reach. I was able to rest comfortably and did not need constant care.