It has been suggested that I would be a good candidate for reconstructive surgery on my maxilla and palate. The surgery would require the harvesting of the entire fibula (the small bone in one's lower leg) to use a portion as the jawbone, and a divot of fat, muscle, and skin, with its assorted vessels and nerves from the calf area, to use as the roof of my mouth (just on one side.) This would be installed in my mouth, hooking up the blood vessels and nerves in my neck somehow.

I have had a great healing from my right hemi-maxillectomy and partial palatectomy, but I still hate having an opening in the roof of my mouth. And I can't seem to get a good fit on the obturator appliance that I must wear to talk and to eat.

Have you had this surgery? or similar? I am worried about going into my well-healed surgery site. I am also worried about rejection ofthe tissues......and i am worried about foot drop caused by the surgery on the leg.

I really need insight and advice.

Thanks!

Colleen, I had exactly this surgery last June.

The leg has been a bit problematic, but not from the removal of the fibula. They propped a cauterizer against my foot at one point during the surgery and inadvertantly activated it. This caused me a full thickness burn on the top of my foot, damaging some tendons and nerves and reducing the level of dorsal flexion of my foot. As a result, climbing stairs is a challenge.

Also, the tissue they took withthe fibula did not perfuse properly on the the table, so they wound up taking tissue from my left forearm instead.

Today, if I don't point it out to you, most don't notice. I eat, and chew normally. My speech is fine, and my tongue functions pretty much normally. The only limitation is my mouth doesn't open as fully as it used to.

Overall, the surgery was pretty straight forward. It is major surgery; I was on the table for 17 hours. I would rather do it again than the radiation....that was much tougher
Wayne

Thanks, Wayne. I knew that you had had the recon. done, at the same time as your cancer surgery, right? and I thought that I recalled that you had a problem with your foot. I am sorry for that, of course, but I am encouraged that it was not caused by the surgery itself.

I have such good healing.....My surgery is on my upper jaw, and the hard palate. There is an opening "to the sky" practically, and this graft would close that opening and provide a base for a removeable bridge. It would be a great improvement, but it is difficult to decide to get back into a recovery mode when it is not absolutely necessary.

As I've said to my family.....If I were younger, there would be no question, and if I were older, there w ould be no question, but I am determined (at 63) to live another 20-25 years, and it would be wonderful to not have to deal with this appliance for all of that time.

Wayne..Were they able to do your surgery all through your mouth, or did they need more space and have to make an incision on the outside?

Thanks for sharing your story. I'll bet that I'll have more questions for you.

Unfortumately the mandiblectomy had to be done through an external incision. It's extensive, running from the middle of my lower lip down my chin (it follows a natural crease, and is virtually invisible), down the centre of my throat to an inch above my collar bone, then runs across to a point directly under my left earlobe.

Then, it's straight up until it almost reaches the earlobe. When they removed the stitches, I lost count at 455, but today you truly cannot see it if I don't point it out to you. Even then, I have to actually trace along the scar with my finger for most people to visualize it.

the only point where you can actually see an incision line is right under my ear, and it's not very obvious even then. I believe that the plastic surgeons today can do amazing things.

As for going to recovery mode again....I'm doing that now, and have been for a couple of months now with dental implants. Could I have gotten by without them? Yes, of course. I am thrilled not to have to though. after what we've already been through, nothing additional seems all that bad somehow

There are quality of life issues that come up, even now. I think that if there is something that can be done to get rid of that orbturator, go for it. I doubt that you'll ever look back.

As for additional questions, please ask away.
Wayne

Colleen, I also had the surgery you are talking about and it's "doable".

It does require an incision that cuts through the bottom lip, down through the chin, and across the neck...........but that is for lower jaw removal. Where yours is upper jaw, it may be different.

My leg is weaker but truly, I get along just fine and do everything I could do before except run really fast...............and at 45 I'm not playing softball any longer and stopped jogging years ago........so it's all good!

Tough decision ahead of you. Try thinking of it this way............is it cosmetic or function that it will improve?? Because if you are planning on those 20-25 more years..........why not take steps now to be as functional as possible?

MInnie and Wayne, do you have numbness of your lip? or any drooping? I don't want to trade one problem for another. I know I will have other questions.

Thanks.

I have numbness on my lip to the left of the incision line. Initially it was completely numb, now only partially so. It took a little while to get used to, but it's really no big deal. It can be a bit embarrassing when eating ( you tend to drool a bit) but I find I wipe my lips with a napkin frequently, and it's a non-issue

No drooping (that's something that tends to be the result of a surgeon in a hurry, not a legitimate side effect).

Good luck with your decision
Wayne
Minnie is absolutely right re: functionality vs. cosmetic. I sense it is a functional improvement here

Yes, half of my lower lip is numb but it took me a very short time to adjust to that and now I don't even notice it. The drooping is a more troublesome issue. It doesn't begin to be a problem for a couple years after the surgery as the drooping becomes more pronounced. I have had a series of surgeries to repair it but got sick of being in the hospital so stopped. It doesn't affect my day to day, doesn't affect my eating, etc. Does it look different? Sure it does, but my husband and kids don't notice it so I'm good! I will most likely do some more work to it at some point and time. I wouldn't let this issue stop you.

Wayne,
I'm curious as to who told you that drooping of the lip from this surgery is generally the fault of a hasty surgeon? I've seen pictures of and met a few people that had the same surgery as mine, and they all have the drooping issues. It takes a couple years for it to become noticable for most and the severity of it differs, but none got by without some changes. Until I met these people and read more on it, I thought my lip damage was the way it was because a nerve had to be removed because the cancer had begun to track it..............but with research I found out it's a pretty common side effect.
Just interested to know if there is some new research out on this?
Thanks, Minnie

Minnie....where did you meet other people with this surgery? There aren't many on this board,and there are very few with my particular surgery. Thanks.