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.

Hi Colleen,

I've met four people just from my doctors office over the four years since my treatment. He calls me when they are diagnosed and I go see them, talk to them, before, during and after the surgery. There is also a support group in my area that I see other patients at.

I see you haven't had radiation. You know, alot of my lip damage has been blamed on the radiation ( I had regular radiation, not IMRT) so you may not experience what I have.

Minnie,

I was told that by one of my primary surgeons. I had read your story prior to my surgery, and specifically asked about the potential for partial paralysis, drooping lip, etc.

My recollection of what he said was that although there were no absolutes and that each surgury was unique, drooping lips, cheeks, etc. were usually the result of errors during dissection.

He said that it was rather common given the concentration of nerves and nerve bundles in the area, and that sometimes it was really hard to avoid.

That said, I have no problems in that regard at all. I have met a couple of other people who had mandiblectomies as well, done by the same surgeon and they have no drooping lips either.

I dunno...........
Wayne

I have talked with tons of people treated by lots of different surgeons in different institutions that have had this procedure. Some have nerve damage, some do not. But I don't think that the many people that I have talked to with it are all victims of bad surgery. Different anatomical issues, and disease states of different extent and location with each patient, end up with the need to excise or even intentionally cut various nerves. Most were told AHEAD of time that this was a likely outcome, depending on what the surgeon encountered in process. I think that to call it an "error" is wrong. There are so many variables that that a generalization isn't fair.

Brian, I agree with you, I think the outcome has alot to do with the individual and all the other numerous circumstances and details that are involved in such a huge surgery. I know for a fact that my surgeon is one of the most caring, dedicated surgeons around and he takes great care with his patients. I've also been told that not all of the damage is from surgery, some is also from radiation damage. For the first two years, my lip was fine.

Wayne, thank you for the input, interesting what your doctor has to say. Are you able to make the "fish face" with your lips? That is a big indicator if you will have any nerve damage down the road, and I was asked to make that face repeatedly the first few days I was awake after surgery. I cannot make that face, my lower left lip won't move. Keep in mind that this type of deterioration doesn't happen to everyone and it takes time for it to show up. It's minor compared to some others I've met, trust me.

I did not have this type of surgery, and I cannot control the right side of my mouth, and of course am permanently numb on the left side of my neck from the angle of my mandible to the midline of the front of my face from nerves that were intentionaly cut during the neck dissection. But radiation damage to the facial nerves is a reality, and at the high doses, particularly pre IMRT like me, a reality. It started to get really bad about year 3 out from radiation, and I have seen radiation only patients with faces that look like stroke victims on one side. There are many paths to this outcome.

in defense, (not that I'm feeling attacked, rather to clarify what I said earler) my recollection of my doctors comments were
"there were no absolutes and that each surgury was unique, drooping lips, cheeks, etc. were usually the result of errors during dissection.

He said that it was rather common given the concentration of nerves and nerve bundles in the area, and that sometimes it was really hard to avoid."

I didn't suggest or imply that this was always the case, rather that it often was.

As it happened, I had an appointment this morning with the same surgeon for a check-up. My recollection of his comments was fairly accurate.

While he did restate that there were specific circumstances where facial nerves had to be severed and/or removed, in his experience there were more instances of nerve damage from radiation than there were from surgial necessity.

I don't think we're really stating contrary opinions...

As for making "fish lips", yup, I sure can. I was asked the same thing several times during my stay in hospital. I have numbness to both sides of my incision as well, but the movement in my lip and face is not impaired. I find that it lags a bit being insensate, but when I'm looking in a mirror, it reacts exactly the same as the unaffected side.

I'm hoping that the fact that I had IMRT radiation will minimize any "surprises" down the line, but who knows?

Wayne

I thank you guys so much for exploring the various issues involved here.....and there are obviously several. I had a bit of a droop in my lower lip at first, after surgery, and it has gotten better gradually...actually was quickly not obvious to anyone but me....and now my fish face is just a bit out of round, but I can smile and that makes me happy. I am so fortunate that I did not have radiation, so my progress will either remain the same or get even better. I am hesitant to take a chance on trading this good outcome for more surgery. I will keep on trying to make my obturator appliance satisfactory, and then consider surgery if I can't get happy.

More input is always welcome. I didn't mean to shut this discussion down....just wanted to say that I am listening, and I thank you.