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.