im scheduled for surgery 4/11/11. total glossectomy bilateral neck dissection with trach. flap reconstruct. from thigh.
will the pain and burning feeling in my mouth stop after surgery. how long after reconstruction does it hurt?
is it something i have to deal with forever? current pain med roxicet is ineffective. How about the saliviating does that ever stop. im tired of this and i havent even started yet.

Well I suppose its true to say that the pre-existing pain went away for me, obviously replaced temporarily by the after effects of the surgery which was well managed for me and I had much less pain than I expected post surgery. The main discomfort was the trach which was out after a small number of days (I can't remember how many but less than 1 week). Almost a year ago for me and things are going well so far.
Good luck and best wishes.

thanks martin. good to see your doing ok.

I am getting ready to have a total glossectomy and laryngotomy (how the heck do you spell that) here in a couple weeks. I am trying to face the fact that I am never gonna speak again or look normal. I am 41 years old.

So I am lookin for any information I can get about life after a total, so that I know what to expect.
I am scared as hell but they tell me this is probably my last hope for getting in front of this cancer and beating it. Otherwise I am probably a goner. So I will fight as hard as I can.

sorry to hear about the laryngotomy ( i cant spell it either) i know how you feel about loss of speech and looking normal the inability to eat sucks also. theres too much uncertainty about the future. im not having much luck finding post surgery success stories yet or what to expect in the future.
i tend to expect the worst and hope for the best.
since were kinda doing almost the same thing at the same time id be happy to relate my experiences as they happen when i can.
no sense traveling that road alone.

Rebel,
I sure hope things go well for you on your surgery..
I am to see the ent tomorrow for a lump, hopefully all goes well. I see you are from wiscony too, Ill try and keep track of you on your journey.
Dave

Might be best to ignore the future and live for now and as you go. 4 yrs means nothing to this stuff so I just live each day and smile and thank God I am still here.

Hi guys, I can't really offer any advise on the surgery as my husband was inoperable by the time of diagnosis. But I do want to say hang in there. There are people out there on these boards that would have been where you are and they will give you advise when they see your post. Like Jim said, live for now and ignore the future. You'll soon get the hang of this way of thinking. All the best and you are all in my thoughts.

Yes - there are people out there who have had total glossectomies and can communicate okay - removal of the larynx is a different story commication wise, but there are ways for you to communicate after you've healed - I'm not overly familiar with them, but the is info here somewhere.

With regards to post op pain... Okay I had a hemi, reconstruct, and left neck dissection. Post op the only pain i jad was the trache (frankly it wasnt painful - it was a pain in the a**) I hated it. It was only in for 3 days then they put in a fenestrated trache which allowed me to breathe normally - from that point on I was good. Day 5 they removed the trache. I had a dressing on my wrist that was uncomfortable - but not painful - mostly I was stiff and numb. Used morphine for the first day or two but it was patient controlled so I rarely used it - after that 2 Tylenol three for a head ache before bed was all I needed - by day five I wasn't using pain meds at all. Everyone is different but that's my story..
So the pain does end - eventually.

Best of luck to both of you...

MT Lisa... You should not be horribly disfigured... You should look ok... Ask them - look up pictures. Hugs to you...

ok guys thanks. im hopeing to not have a trach very long. does sound like a pain in the azz.
i cant stop thinking about the future. i have a feeling that in another few days things will be changed forever.
i will post with updates when i can.
knowing that others have been through it and were able to continue a somewhat normal life makes me feel much better.