Checkin' in

be4man

I've been remiss in checking in with you guys for the last couple of weeks. I did just catch up with reading the new post and Marie, you seem to be doing great! I'm very happy for you.
I don't have much to report in the way of improvement. I still can only whisper and swallowing continues to be painful. However, I eat any and everything I want so I do have that to be thankful for.
When I saw my ENT a few weeks ago he mentioned that if I hadn't improved in 2 months he would recommend hyperbaric oxygen treatment. Has anyone here had that? If so can you shed some light on the experience? My throat is still quite swollen at 4 months post treatment and my perotid (sp?) glands seem to stay inflamed and painful. If there were some form of pain medication that worked for my throat I would probably be a lot less discouraged with my lack of progress. Nothing seems to offer any relief.
On a brighter note, spring is closer than it was yesterday! I'm ready for warm weather!

Barbara

MLC53

barbara,
thanks for the praise! i need all i can get.

as far as hyperbaric oxygen, i don't even know what that is. what would they be using it for on you? i hope someone can provide some answers for you. hang in there!

TereB

Well, I am glad you can eat anything you want, that is good.

I was in the hyperbaric oxigen chamber for 40 sessions and it worked great for me. I was going to have oral surgery and my surgeon suggested I go to the oxigen chamber because radiation had weakened bones around my mouth. The treatment actually strengthen the bone. Some people were there because of wounds that would not heal.

The oxigen chamber is the same stuff they use for divers to decompress. It is not painful or uncomfortable.

The chamber is like a tiny submarine, remember the Beatles' Yellow Submarine? Sort of like that. There are seats like those on airplanes. And there is at least one narrow bed for those that cannot sit. You wear a mask, a big one sort of shaped like a bell, like those divers used years ago and it is clear, you can see through it so you can read if you like. Some tubes are connected to each mask, I think two, and that is how you are connected to the oxigen. I don't know if sessions are the same length for everybody and I can't remember exactly how long mine lasted, maybe two hours. After you are seated and connected to the oxigen, the pressure is lowered and we used to joke that we were going deep underwater. After about an hour you have a 10 minute break, can take off the mask, have some water, move around a little. After break, you stay in for another hour more or less and then you "surface". Once the doors are opened, you are ready to go home.

There was always a technician in the chamber with us and we all sort of had fun. There is no room for a lot of people, less than ten, so it is not crowded. To me it felt better than going into the MRI machine.

You need to wear only cotton clothes and they give you surgical scrubs. Since it tends to get cold, I recommend you wear a long sleeve 100% cotton T-shirt to wear under scrubs and wear warm socks. I also brought a book to read and sometimes I just took a nap. I also asked for a blanket. I took my scrubs home so I wouldn't have to change clothes.

The number of sessions depends on what you are there for.

I hope your throat improves and especially that the pain goes away. I am sure things are going to get better even if it seems a bit slow right now. I also think you have a great attitude, positive, and that will help you a lot.

All the best,
TereB

BugHunter

Hi Barbara!
The swelling you mentioned sounds kind of like what I went through. As it ended up I had a condition called Lymphadema that caused the swelling. It is caused from radiation cooking the lymph glands so they will not accept lymp fluid from the glands above. The treatment is massage that stimulates the glands to take the flow from upstream.(someone else had this too here, marie was it you?) It worked well for me.

www.lympademapeople.com is a good source of info but they make it sound worse than it really is.

BILL

MLC53

BugHunter said:

Hi Barbara!
The swelling you mentioned sounds kind of like what I went through. As it ended up I had a condition called Lymphadema that caused the swelling. It is caused from radiation cooking the lymph glands so they will not accept lymp fluid from the glands above. The treatment is massage that stimulates the glands to take the flow from upstream.(someone else had this too here, marie was it you?) It worked well for me.

www.lympademapeople.com is a good source of info but they make it sound worse than it really is.

BILL

yes, bill. it was me that had the lymphatic massage therapy done. in fact, YOU were the one who told me about it to begin with. it has helped quite a bit but i still have some slight swelling. do you still have any swelling bill?

be4man

MLC53 said:

yes, bill. it was me that had the lymphatic massage therapy done. in fact, YOU were the one who told me about it to begin with. it has helped quite a bit but i still have some slight swelling. do you still have any swelling bill?

I'm familiar with lymphedema and the CDT (complete decompresion therapy)I don't think that is the problem but I may be wrong. The swelling is inside my throat. There is some swelling in my neck but not a lot.
The reason for the hyperbaric treatment is to heal the area in my neck/ throat that was burned beyond the blood flow to heal it. This is also why no pain meds help. There isn't enough circulation in the area to deliver the drug nor the oxygen to heal the tissue.
Thanks for the info so far and if anyone has any other ideas I would love to hear them.
You all are in my prayers!!!

BugHunter

MLC53 said:

yes, bill. it was me that had the lymphatic massage therapy done. in fact, YOU were the one who told me about it to begin with. it has helped quite a bit but i still have some slight swelling. do you still have any swelling bill?

I still have a bit of the "turkey neck" thing going on, but not much at all.

BILL