I wrote awhile back with very few responces so I know how you feel Tony.
I had a Pharyngolaryngectomy, Rad neck dissect W/reconst, free skin flap W/microvas, done at The Hospital of the University of Penn. Also going Monday to meet with Photodynamic therapy Dr.
When I first spotted the blood back in mid. May I freaked and was writing here like crazy, with very few responces.
Now I understand why, probably noone at this site has ever had it done, silly me I thought it was a common procedure.

So far it's been the worst experience of my life.
I was operated on 6/13, then a bloot clot 6/14 that nearly lost the skin flap, then on 6/15 I had a bleeder and they had to do surgery one more time.They say this NEVER happens.

Right now have stoma,feeding tube, my left arm and shoulder are messed up and get tired very easy.

I'm doing better everyday, live one day at a time. The last 3 days I had a severe Hive outbreak that nearly made me go insane LOL especially because I have an apt. 7/30 and don't know what I'd do if I got an attack enroute.
Probably take more Benadryl.

I sure can sypathize with you Tony, but see your not alone as noone here that I know of had this procedure either. Like somebody said on here "knowing we aren't going to die of cancer anytime soon" is the only thing that can help us through these rough times.

Best of luck to all of you

Marlene,your situation seems terrible to me and my heart goes out to you. I really did get some responses but you are the first person that has had a larygnectomy. I was "lucky" to not need a neck disection. This experience could have been much worse. I am here if you need to talk, I don't have many answers but I'll try to help. Tony

Hi Marlene,
Was about to email you to see how you are doing since I hadn't heard from you recently. Sorry you aren't healing quicker but I think they beat you up worse than me. Do you still have NG or is now a Peg? Are you able to eat or drink anything? What are you wearing for stoma covers? Can you talk? Email me if you need any help and good luck on Monday. Let us know what happens.

Take care,
Eileen

I also did get some answers and help Tony, but I was in such a state I was looking for a miracle.
If we look around we can always spot someone worse off then we are.
It's still hard when your covered with hives take the Benadryl, that works opposite on me, and was up all last night with the nervous legs thing. Just about had a pity party for myself today but this is no time to weaken. Right?

I still have the NG, which I hate but dread them taking it out then I'll have to ingest this terrible Nutren stuff instead of just hooking it to tube. I can drink water, if I'm very careful can keep it from going up nose.

I made some stoma covers but my favorite around the house is this really wide gauze. Actually haven't been out except to go to Philly and have little desire to socialize at this time.

Not talking, get very frustrated that people can't make out my speed writing, can't they use their imagination? LOL

Best of luck to all of you

Marlene, How are you? I wanted to tell you some things that I have found out on my own. You don't get the information you should when you leave the hospital. Plus you are so wacked out on painkillers and steroids and antibiotics you can't even see straight. You are left to fend for your self. First,when you are taking a shower, I find if you bend over you can wash your hair and the water won't go inyour stoma. 6 weeks after my surgery my sister bought me a shower protector and it doesn't work. The next thing you have to do is get an electro-larynx. When you get it however (I got mine on E-Bay for $300) you might not feel like holding it against your neck, they come with atube that you put in your mouth. Just try it and it will eventually work. In a while when your swelling goes down you can push it against your neck. Writing will eventually become a thing of the past. Find your best friends and talk to them! I took up reading, studying Buddhism. It is very helpful to relax and you realize you don't need to say that much after all! My road rage went away. I don't say bad things about people any more. It is a waste of words. When you feel that nobody is listening relax, you know the answers! If you have questions, be patient,the answers will come somehow. I was given some knited stoma covers at the hospital. These are a god send. If you go without a cover you will feel the sneeze or cough and it will come out whether you like it or not. The humidifier the hospital arranged for me to rent is helpful but don't buy any water from the medical rental people.Go to CVS and buy distilled water. I think I paid $2.79 a gallon. The rental people charged my $42.00 a month. I havent used the suction machine, also from the rental people, but I could be lucky. I still have my feeding tube in my stomach. I am starting my radiation on Tuesday so I'm not in a hurry to get rid of it yet. I might need it if my throat gets sore. Eat organic food if you can. If you have a health food store anywhere near you, eat there if they cook or buy brown rice and beans. Also get some enzymes for your digetive system. It is probably in need of help after surgery and antibiotics. If you want to I can give you a laymans version of healthfood. I learned everything from the internet and a special friend. My stoma isn't fully healed,about 90%. But I have been driving into town on a daily basis and I am looking and feeling great. I don't get depressed anymore, believe me you will get through this and be happy again. It just takes friends and if you don't have any, make them! My thoughts are with you. Tony

check this web site if you haven't already
http://www.noseandsinus.net/PDF%20Documents/Pharyngolaryngectomy_PT-INFO.pdf

You've come along way Tony. Happy to hear you've found peace and got rid of your anger.

I read the web site and is almost exactly what happened to me except speeded up big time. It was all done in 8 days and they pushed me out of there, lucky for me I have a son that learned to care for me.

I made my own stoma covers with soft, white, wrinkly, fabric in the shape of a diamond, hemmed all around, then I tie at back of neck.
When I get rid of bandage side of neck soon it will look better.

I thought I was an A-1 nutrition expert grew our own veggies made them into juice in the Vita-mix machine and drank it daily for 3-4 yrs before this hit me. I'm drinking the formula that I poured into the N/T since I'm not able to swallow anything else.

You are right about friends and family helping a lot and also I really don't have anything that earth shaking to say.

Don't know if your married but belive it or not there is one good side effect of this procedure.
My husband recently told another that it's not a good thing to have a wife that can't talk as he could pretend to listen before now he HAS TO READ what I put in front of him. He's hard of hearing also so this, besides living longer, had an interesting side effect.
Still looking forward to speaking again of course.
I've an apt. at UPMC in Pitts. 8/8 to see what they can do for me.
Surprised to hear that you can put the electro-larynx in your mouth. You got a really good deal on that one as in Philly they say $600 and I don't think my ins. covers it.

Thank you Tony, you've been a big help.
Wish you luck with your Radiation treatment.There is supposed to be a very good hosp. in TX. are you getting treatment there?

So happy to read you are doing so well.

Best wishes and luck to all of you