Hey all,

I just got back from my visit with a team of doctors at UPMC Presbyterian Hospital in Pittsburgh. I may start HBO therapy as soon as Monday.

The doctors feel that this therapy will heal the fistula that I developed. I asked about the success rate. I was told that it falls somewhere between 75% to 80%. If it works I can avoid surgery to correct the problem.

I was allowed to take a test run in one of the tubes. I may have to be under a mild sedative for the therapy sessions, as I discovered that I'm a bit claustrophobic. The sessions will last for 2 hours, 5 days a week for 6 weeks.

This really goes a long way in relieving my fears of ORN.

I'll keep posting throughout this process.

I'd love to hear from anyone else who may have gone through this.

John

Good luck with the treatment John, I would need more than a "mild sedative" to get in one of those contraptions. We have a friend who is getting ready to start a course and are really hopeful it will help him.
Take care
Marica

Marica,

I was hoping that the tube would be somewhat larger. I know when the opening is shut and locked behind me that it will be a problem. I first notice the claustrophobia when I had my mask made for the radiation.

I'll make it through. I'll have to be sedated and someone else will have to drive me home.

Let me know how things turn out for your friend.

John

Hi John,
I did 30 "dives" of HBO treatment and did well with it. I was also fearful and claustrophobic of the mask for radiation but soon adapted to it. You'll find yourself doing the same with this chamber. Bring a movie to watch and that will help keep your mind off the closeness of the tube. I did find that I was tired after the treatments, which I think was simply from being still for so long, not from the treatment itself. The biggest change I had from the treatment was a change in my eyesight. I could see better! The improvement only lasted approx. 6 weeks though.
Good luck with it.
Minnie

Minnie,

The doctor did tell me that one of the side effects would be a change in my vision. He told me not to get a prescription changed if I had one.

I know I'll have to have something to calm my nerves. I just don't do well in tight, confined spaces.

The treatments sound promising and I'm looking forward to it.

John

John, it really does get to be familiar and non-scary after the first or second dive. If I was not watching movies, I slept. Here is a tip. Take an antihistamine pill 30 min. before each treatment. This will help with pressure in your ears. Also, my vision improved dramatically and three years later is STILL good. Wore glasses to read and use compute for years and do not need them now. So you may get a big bonus if you wear glasses. I know you will do fine. It does feel strange in the beginning, but the speaker system lets you talk to the attendants at any time. They will never, ever leave you alone. Just concentrate on the good it is doing for you.

Thanks for the support guys. I just don't want to get in the tube and have a panic attack. I know I was told that I could be out in as little as 45 seconds. But with that being said, I'd rather have something in me to calm the nerves before I start.

John

John
They had discussed doing that treatment with my dad. He is so claustraphobic, let me put it this way, he can barley wash his hair under the shower claustraphobic. Imagine when he had to do Pet scans as well. That was his only fear. Not cancer, not radiation. I think if you just discovered it you'll be fine. Ask for Adavant. Works really good. The day I took him for his PET he thought we were in my car the entire trip instead of his. Breathe deeply, relax, and good luck.

Zanax or Valium work well also. I saw a picture of a new model HBO unit in the paper the other day which was clear plexiglass. They also have big HBO chambers that hold 6 people.

The unit that I'll be in is clear acrylic. I can see all around the room. It's just the confinement that has me nervous. I have no problem with the PET scans or Ct scans. This is different. I'm hoping to hear something today, so that I can start this on Monday.

Thanks for the support guys!

John

If Michael Jackson can do it - YOU can do it. I heard that Jacko has his own personal HBO chamber.

Don't be embarassed about asking for anti-anxiety meds. Most of us do and it'll help you sleep through it. Some have said it's a little chilly in there so you may want to ask for a blanket.

In many ways MRI's are worse. They're solid for one and make weird and loud noises during the scan. You'll get used to it - I sleep through those too. Plus you can't watch movies. (Ask for ear plugs if you ever get one).

I just found out today that I will need 10 more "dives" after my remaining lower teeth are removed in approx. 2 weeks. I'm kind of looking forward to the relaxation and down time in the "tube"! My facility has the clear chambers that Gary mentioned.
Minnie

Oh yes, John, DO ask for extra blankets. I must have whined loud enough for Gary to remember. I just about froze that first dive but was too stubborn to ask to be taken up for that reason. I know you will be fine. By the end, I had figured a way I could turn myself end to end and freak out the nurses, but they never left me alone long enough to do it. You can wear glasses, but no jewelry, lotions or potions, perfume or aftershave, or makeup (probably doesn't apply to you) and no hair gel or oil. You will take all your clothes off and put on hospital gown and pants that have been washed in special detergent. All this gets to be routine too. By the end of the first week, you will be a pro. I just remembered that I also had the option of listening to the radio, or the television, not just play movies. If you get involved in a thriller, you will forget all about where you are.

I was hoping to start on Monday, but it seems to be delayed while they wait for approval from my insurance company.

I was told that I can wear clothes in the tube as long as they are all cotton. If not I'll have to wear a very fashionable hospital gown.

I was told about not having any aftershave, hair gel, etc. I was told that I could have no deodorant on due to the perfume in it. I'll have to warn my co-workers to stay at least 10 ft. from me. They may want to stay even further back!

John

I got the call I've been waiting for.The Oxygen Therapy Dept. at UPMC Presby just called to tell me that my insurance has been approved and I begin the treatments tomorrow morning.

I'll post afterwards to let yunz guys (Pittsburghese) know how it went.

John

Hey all,

I made through my first 'dive". Had a little trouble getting one of my ears to pop, but other than that no problem! I did take a mild sedative prior to the treatment. The two hours went by before I knew it. I didn't even get to finish watching the movie I picked out. One down and 29 to go.

I'll have 20 dives and then have the dental work done that I need. Then I'll have another 10 dives.

Be good guys. You're the best.

John

Good for you John, glad to hear it went well for you. Gotta find either hour long cable shows or movies that are short............or you always end up missing the ending!!
Minnie

Hey all,

I haven't posted for a while now. Computer crashed and we just got it back from the "computer doctor".

I've completed 12 dives so far. Had to put them on hold for a few days because I caught a terrible cold. Had real difficulty getting my ears to regulate, so the Doc told me to take a few days off. He was concerned that I'd damage my ear drums if we pushed it.

I have an appointment with my ENT on Monday. We will discuss the prospects of having dental work done. So far the results are promising. This fistula that I have is really closing up quite nicely. I'm very optimistic that these treatments will do the trick.

John

Hi John,
You should be optimistic that this treatment will aid in having your dental work done. I had a tooth extracted after my HBO treatment and I healed and tolerated it as I would have before radiation.
Glad to hear all is going pretty smooth.

Minnea,

Things are going so well that I've actually been able to walk around without a bandage over the fistula. It has dried up and stopped draining. I'm taking all of this as a good sign.

I'm eagerly anticipating my visit with my ENT on Monday. I haven't seen him few months. I recently graduated to visiting every three months.

What a long strange trip it's been! Oh the stories I'll be able to tell my grandkids.

Continued good health to all of you.

John