Colin,

Thanks again for the helpful information. I'll get a ring cushion before I go in for surgery two days from now. As for a peg tube, my doctor said they don't do them. They put it through the nose. I might get one when I go for radiation if I still can't swallow. Radiation treatment is at a different hospital and they do use peg tubes. Hearing from you has made this easier to accept. Even though I have a  a very supportive wife, familly and friends, none of them have been through it. Hearing from someone who has really helps.

Marv

anyone have any news on Marv's progress? Colin

Hi. Well, I had the surgery on May 17th. I had about 60% of my tongue removed, which was less than they thought would be. I had a flap made from the skin on my left forearm. I was in ICU for three days then transfered to an extended care facility where I still am until go home in four days. So far, the biggest setback is a damaged vocal cord, I can pronounce words fairly well but can only talk in a whisper and I run out of breath after about one or two words. I an still have a trach tube. They won't take it out unt could have I have swallow studies done. Turns out that your vocal cords help determine where things go when you swallow, They said that taking out the trach could cause aspiration. There are things that can be done to improve it but they want to wait on even temporary repairs for at least two months to see if it corrects itself. Has anyone else had this problem?

Thanks for the support. It made a big difference in helping me make my decision.

Hi Marv,

   Pleased that you are post op and only lost 60% - the same as me.

The Prof. that was my surgeon wanted to put a PEG i n after about 6 days - but his team got me

a reprieve for another 3 days. I found the trachea tube  annoying and in the night it would come out about 5 or 6 inches. I just pushed it back in.

  I preferred the PEG which is just as well as I still have it. Do you have problems saying words beginning with G?   Did they remove your soft pallet?  (the back of the roof of your mouth just above the tongue)

Was the flap added to your tongue. I know some people had reconstruction with their Ops.and all seem to be OK.

  I had very little mobility with my tongue after the Op. but has slowly improved over the years, I hope yours will be OK.

.

Really good to hear from you.

Regards

Colin

Hi Colin,

Fortunately, my soft pallet was ok. My flap was added to my tongue. They gave me exercises and I'm getting better at moving it around.  I can kinda stick it out now and I can move it from side to side and up and down. They said it would improve as the left side built up strength to move the right side. I don't have trouble with my K's but I tend to slur my S's. All things considered, I'm very happy with the way I pronunce words. People hearing me for the first time can usually under me even thouhg it's almost a wisper. 

Now, if I can get my one vocal cord moving, my speech would be about 80% to 85% as good as it was. I can only say a word or two before I have to catch my breath because the one cord doesn't move.

I do still have radiation coming up and realize that could cause further damage. As for eating, I'll be evaluated for that in the next two weeks. A lot depends on the vocal cord.

I was lucky enough to get one of the best surgeons around and to have a wife who's been right there every step of the way. I told her that I owe her for all that she's doing. She said my honey do list is growing by the day.

This certainly isn't something that has a quick fix and has no gurantees along the way no matter how well you think things are going. I hope things continue to improve for you.

Thank You,

Marv

Hi Colin,

Just wanted to update you on what's happening. I still haven't got my voice back yet. They're going to wait until after radiation to do the temporary fix if it hasn't corrected itself by then. And, I'm finding that my ability to eat isn't improving. I can still only eat very soft foods. My tongue just doesn't have enough mobility to move things around well. Also, My swallow is no where near as strong as before the surgery. I have to wash even very soft food down with water after a few bites. Eating is no longer a pleasurable experience. It's now a chore. 

As time goes on I'm finding that there are more adjustments to make than I thought  there would be but, I do have more ability than they predicted I would have. I'm trying to be more positive but find that there are times when I have a hard time doing that. Especially with radiation coming up. A lot of people on the boards say radiation did more damage than the surgery and that some of it is permanent.  It sounds like you have learned to adapt very well. You must be someone with a positive attitude about life. If you have any suggestions for preventative mesures to minimize the side effects of  radiation, I would appreciate hearing about them. 

I hope things continue to go well for you.

Marv

Hi Marv,

You have not long had a very invasive operation.  It seems to me that you are recovering from it at an amazing rate.  I would guess that within six months or so things may well be back to almost normal.

As you know , my surgery etc was eleven years ago. I am unable to eat at all and still sound like the village idiot. I am just happy to be alive.

The radiation therapy  (I had six weeks of weekdays - the last two weeks twice a day) was no problem at all. I also had chemo once a week.

You could get something like mild sunburn on the site, but that is no problem. During the radiation you feel nothing at all.  As I said before, if you suffer from mucus build up be sure to have a good cough up prior to the radiation as they bolt your face mask to the bench as you lie on your back.

Don't worry about the radio therapy its no big deal.

At the moment I am sitting here with my breakfast bag of liquid food going in via my Peg. It takes 1 hour. (its about the12,500th time)  Just be happy that your outcome is so much better.

Hope all goes well for you.

Colin

Hey Colin,

It was great to hear from you. well, I thought things were going well for me. I started having pain on the remaining side of my tongue and it was going up into my ear, It felt just like the cancer on the left side. I finally convinced me doctors to do a CT scan. It showed a tumor almost one inch by one inch in size that extended into the new part of my tongue and went into the back of my old tongue. This occurred while I was having radiation. They did a biopsy yesterday and found it to be cancer. The surgeon said he had never seen it reoccur or grow this fast. He said because of where it was, he could not recommend surgery. I talk to a radiologist on Monday about radiation and chemo but, based on what the surgeon said and what I've read, it doesn't sound promising. They said they don't know of any current clinical trials that I could try. The surgeon said, left untreated, I have about two months.

I'll let you knw what happens 

To anyone out there who has had this surgery and is still around to read this, count your blessings. Be greatful for each day you have.

I hope you continue to do well,

Marv

Hi Marv

 I am devastated to read your news and feel your pain,emotions,anger and frustrations. I will be thinking and praying for you and hope that your treatment will continue so they can extend yyoue life. I read that one man on here was given very bad news but then the treatment shrunk the tumour on its own and he’s still here,so there’s always hope

bless you 

from Carol

xxx