I was first told they'd put me to sleep. Now i'm told I will not be completely asleep. I'm scared and want to be knocked out.

Can they do this without me being awake and how much pain will I be in afterwards?

You need to calm down about all this. The PEG procedure is a no big deal.... There are several levels of anesthesia, just because you are not going to be deeply sedated, doesn't mean that you are going to feel pain, or for that matter even remember anything about the procedure. Perhaps you should call your doctors and ask for some premed anti-anxiety pill like diasepam etc. that you can take orally to tone things down some in your mind.

I'm trying hard to calm down. Just reading your post made me cry.

I have to run in the other room just to cry so my father and daughter can't see me.

I just don't know how to calm down. I know this is sooo stupid of me and believe it or not, i'm usually a toughy.

I think i'm frightened of the unknown and some stuff I read here scares the hell outta me

Listen, Ann Marie - it's OK to cry - in fact it is therapeutic. Lots of very strong tough people have cried. It's definitely not stupid. And it's ok to feel compassion for yourself. It shows you are a compassionate person and have feelings for others, too. Just because you've read about some scary stuff, doesn't mean it will happen to you. You've probably heard about the "one day at a time" thing. . . . well sometimes you have to take it just five minutes at a time. Just tell yourself, you will allow 5 minutes for the scary feeling and then you will stop and go do something physical like toe touches. And DO IT! I really feel what you are going through but it will get better. The in between stage of not knowing exactly what is going to happen is so hard. But once you get into the fighting stage you will feel better and more in control of things. Hang in there, "life (does) go own" and it gets better.

How do you know if your tongue is affected. Do you feel funny on the tongue or something?

My throat seems to feel like it's more sore than usual. Feels like it's going down my throat more. I swollow ok, and I can still eat up a storm.

I just sent my doctor an email about that some premed anti-anxiety pill. Hopefully I'll hear something

Ann Marie...I can practically FEEL your anxiety, and I wish I could come and take you for a long walk and let you talk and cry to your heart's content. I'll bet that your dad and your daughter would understand if you did that too. Don't underestimate them! And remember this: they are afraid too.

Do you trust your doctors? If not, find other ones. If so, then let go and let them do their jobs. If you have made all of the decisions that are yours to make right now, then let it go......let it go...breathe deeply and accept it. You can't fight it. You can't change it, as much as you'd like to. The doctors and their staffs are not going to hurt you. The are in the business of taking care of sick, frightened people. They will be very careful with you. They said that they will not do full anaesthesia because the procedure doesn't require it, but you WILL be sedated. Have you ever had a colonoscopy, for example? You are sedated...you don't feel a thing,.....and you don't remember a single thing. It is over before you knew it began. That's the way this will be....NOT your problem! Just go to sleep......and let somebody else take care of you.

Give in and let others take care of you. Never give up your fighting spirit, but DO give up this anxiety over things you can't change.

I sometimes say to people, "Put on your calmness and patience like a garment." Visualize yourself slowing your heart rate, and slipping a garment of calmness over your head. Wear it and move through what you need to do.

All of this is head-talk. Do NOT hesitate to get some anti-anxiety medication from your doctor. I promise you that you are not the first to ask for it, and that it is not a sign of weakness. You need it, and I can promise you another thing or two: The doctor would rather that you be calm for him to do his best for you, and also, you will save your energy for coping and healing, instead of wasting it on anxiety about things you can't control

My heart goes out to you. Hang in there. You're gonna do fine, once you get started and have an idea of what will be going on. Stay close!!

Ann Marie,

I can only describe my own experience in which case I was put under general anesthesia for my PEG tube. I had to stay awake for part of it and they then put me under. I don't recall there really being any pain to speak of even though your stomach wall has been penetrated with the device. I just found the tube to be a general day to day nuisance but it was certainly a life saver. You will have to pay particular attention to proper cleaning and flushing of the tube and you will also go through a LOT of adhesive surgical type tape to keep it taped upright to your torso area.

Bill D.

Ann Marie, I was the ultimate crazy woman concerning the PEG, which was a complete and total waste of my energy. I seriously considered leaving town and changing my name.

Here is how it went. I put on a hospital gown, was rolled into a surgical suite, given an IV, and when I awoke I had a PEG. It was short acting sedation, and I felt fine after it quickly wore off. The PEG itself did not hurt, was just a little sore which Tylenol took care of. There was a little ooze for a couple of days, until things healed, but nothing major. The day after I got mine, I was out pulling up ivy that had grown where it was not wanted.

The PEG made getting through treatment so much easier because when my mouth was very sore, the drugs could go in via PEG. Along with food and water, of course.

Please trust me, the original freaked out woman, that this really is NOT a big deal!

August...what were you feeling yesterday?

I went for my PEG tube. I had called a few days ago asking for something to calm me dow, Doc says I don't need it. So with panic attacks, crying and trying to breathe in and out, all the way down yesterday, I finally get there.

My legs turned into rubber when I got there, but I made it. I made it fine through the needle thing. Told the lady no residents were doing me because i panic with needles. They were very understanding.

They whell me in and all along i'm telling them I need to be as close to knocked out as possible.

I know a few of you gave me sites to check out, but not having the time to read them with that care of my dad, I need quick answers. With that in mind, I WAS NOT aware they put a tube down your throat while you're awake.

NOT A GOOD THING TO FIND OUT WHEN ON TABLE!!!

No drugs in me they tell me this is what they're doing. I don't think so!I got very panicy. My blood pressure is usually 100/70 and it went to 147/?. The nurse asks...are you nervious? Well, duh?

The doctor asks me to give it a try. I happened to look to my left and saw the THing they were gonna put down me and I freaked. I said the only way that thing is going down is if you knock me out. So i'm waiting to be re-scheduled.

This is imbarrassing, but I was orally raped years ago, and that's where my panic comes from. I had a hard time just with the scope going up my nose, but coped with it because it was a difference site.

I have read where there are people who have gone through this with no PEG tube. I'm thinking that's the was to go for me. I'm 5'1" and weigh 217lbs. I eat everything under the sun. I could stand to lose some weight, so i'm thinking I'll bypass the PEG tube.

AM 07,

I did the Tx without the tube and looking back and after reading hundreds of comments from both people with and without the tube I'm glad I didn't have the tube. That's not to say it was easier because it's definately not, at least in the short run.

Either way remember...THE MOST IMPORTANT THING FOR YOU TO DO THROUGHOUT TREATMENT IS TO DRINK 48 oz OF WATER AND AT DRINK LEAST 2000 CALORIES EACH AND EVERY DAY.

You you that and it won't matter which way you go.

I also went through the whole thing without a PEG. I had a nasal tube after surgery, and my motivation was to avoid having it again.

The Doctor agreed to leave me "tubeless" as long as I maintained my weight within 7 1/2% of my pre-treatment weight.

It was close, but I made it. As David said, it was tough, and very painful many times. You have to keep up both your food and water intake, and at times that required morphine just to allow water to go down.

You will have discomfort and pain either way. You have to decide what is tolerable and what isn't, for you.
Wayne

My Doctor said I'll be getting my PEG soon. I'm not so worried about that procedure; I'm more concerned about the radiation after-effects, if any.

My Doctor said I'll be getting my PEG soon. I'm not so worried about that procedure; I'm more concerned about the radiation after-effects, if any.

The radiation treatments will seem like a non-event for the first 2 weeks, give or take. After that, you'll start feeling the effects.

Mouth sores, sore throat, loss of your sense of taste, fatigue, burns on the skin, thick mucous, generally feeling lousy.

It will get worse and worse over the next few weeks, usually hitting it's worst around week 5. For the next three or four weeks, you will continue to feel the full effects of the rad, and then start to improve.

For me, the pain in my mouth and throat were the toughest, second only by the complete loss of the ability to taste anything at all.

You will likely need potent pain relief through much of this period. It is rough, no question. It is doable though. Take it one day ( or one hour, or even one minute) at a time, and you'll make it though O.K.
Wayne

Does anyone know if I don't do the PEG tube, if my throat closes, can they put an Nasel tube in at any stage and get the same results?

Like I said, i'm 217 lbs. I could stand to lose some weight. 135 lbs is/was my ideal weight

AM 07,

Shorty answer is yes they can put the nasal tube in anytime. It does not require sedation or hospitalization. The only thing that must be done is to x ray after it's been guided down into the stomach to make sure it's in the right place.

If you're completely unable to swallow, they won't be able to do a naso gastric tube. I think if you have an option, the PEG would be preferred. With a nasogastric tube, they will NOT put you to sleep. They simply insert the tube, then x-ray your abdomen to make sure it's properly placed.

Mine was done initially in surgery. They placed a couple of stitches inside my nostril to retain it in proper position, which of course I ripped out accidentally the 2nd day I was awake.

The tube was removed, then relaced. The second round was enough to keep me HIGHLY motivated not to have a nasal tube placed again, if I could avoid it.

If your Doctor is not acknowledging your stress levels, talk to someone else. There is no need at all for you to be this stressed
Wayne

AM2007 - you don't want to be thinking of cancer treatments as a weight loss program regardless if you are over wieght or not. Your body needs nutrients and fuel, and you need to be feeding it so that your recovery time is not extended. You don't want to have a nasal tube for more than a short period. You will have that thing hanging out of your nose in your face and dangling in front of your mouth all the time. I think you can imagine what that looks like and how that will impact how you feel about seeing anyone or going out of the house. Nasal tubes are for use for a few days only, and generally not used for long term feeding which you may need.

I got a call today and they have me setup for the PEG tube for May 4th. They will be knocking me out. Thank God for that. My stress has reduced just knowng that.

Thanks for the imput on the feeding tube through the nose. I will heed your advice on this.

I think you made the right decision to get the PEG tube, it will make things easier for you during treatments.

Here's the thing, you are already very stressed out, you don't need the extra worry about what if's during treatment. 90% of patients having radiation for HNC get PEG tubes and use them at some point. It's a reasonable precaution that will give you peace of mind AND access for nutrition, hydration, and medications if your throat becomes too sore later on. Also it is not an either or with swallowing, you can and should continue to do that every day. It really helped my husband and was a factor in how quickly his swallowing recovered post treatment.

It's also very common for patients to take anti-anxiety medication such as Ativan or Xanax. Jack could not have gotten through the radiation treatments without it so don't be afraid to ask for a prescription.

Regards JoAnne

I'm glad you're getting the tube also. I would never suggest to anyone not to have the tube, I personally feel it should be required. What type of radiation are you having? IMRT radiation side effects are not as "tough" as the side effects for regular radiation. With IMRT is the only time I would even think about not having a PEG. Why put yourself through more pain and suffering then you need to? Keep swallowing water throughout treatment and you'll be fine. I had my tube put in before radiation, stopped eating at about 3 weeks, and didn't eat by mouth again for approx 4 months. Kept the tube for 9 months just in case! It never caused me a days worth of problem, in fact, it saved me alot of trouble.