Having a very rough time. been through 6 rounds of chemo, surgery, radiation and now 4mouths out of radiation facing 6 weeks of hyperbaric treatments for radiation necrosis. Was doing well. after having all my lower teeth removed before radiation had to get a peg. Two mouths after radiation started being able to take soup and pureed foods by mouth. Started speech therapy to learn how to swallow again. Tongue exercises stared giving me extreme pain and swelling. Now my lip n chin feel as if they have severe sunburn with shooting pain through the jaw and gums. pain meds don't last but about 2 hours and now they say the pain will increase for about a week after I start oxygen treatments. Oh boy. This is my first time ever trying to talk about this in a forum. I guess I want to ask is if anyone has done the Hyperbaric treatments and have they been helpful in the long run. Also any other suggestions to help keep my spirits up. Thank You and God Bless

Welcome to OCF. Sounds like you have been thru a rough time. Hope you get to start the hyperbaric treatments soon, so you can feel better. Im not familiar with pain increasing once HBO starts, mine dissappeared completely in a few days. It will help you to heal. Ive done 85 of them and it worked wonders for me. After about the first week I felt so much better.

As far as trying to be cheerful, thats sometimes tricky. I keep saying to myself on bad days, that I have gone thru so much worse and lived to tell about it. Many OC patients need anti-depressants to help them thru til they adjust.

Best of luck with your continued healing. Please post your HBO experiences. Also when you have time, add a signature so we can help you easier.

Vicki
Stage IV-b (pT4b NIMO)squamous cell carcinoma floor of mouth
6 rounds chemo
18 1/2 hr surgery w/ partial resection of the jaw
bilateral neck dissection and free flap reconstruction 06/10/08
lower teeth removed 09/08
6weeks radiation treatment 10/08 thru 11/08
peg tube 11/08
getting ready to start 6 week Hyperbaric Treatment
George Washington University Medical Center (1st class)

Christine
Thank you for your reply. Have'nt found anyone to talk to about oxygen treatments, or any other problems I've been having. Its hard for me to get out n join any support groups in our area..I think once I get started and start to feel comfortable, I'm sure I will be able to open up. I will keep OCF informed on how the Hyperbaric treatments go. Again, Thank You. God Bless

Vicki, please feel free to vent here if you need to. After you have been around a while, you will learn how close we are. Its like a huge family where we all understand each other very very well due to the common bond of OC.

Most of us are plagued by some sort of after effects from radiation. I have many of these 'little lovlies' and sometimes get grumpy about it. When I catch myself doing that I just keep telling myself, Ive been thru so much worse that its really not a big deal.

Hope you are feeling better very soon.

Hi Vicki

Best of luck with the HBO treatments. I had 30 HBO treatments prior to my 2nd surgery to remove most of my lower jaw - and obvioulsy also nearly all of my bottom teeth along with the jaw.

I hope that they work well for you.

Karen

Christine,
Two weeks into radiation, I developed burning in the mouth,tongue,lips,face. After radiation burning seemed to subside
some. Burning has returned in lips, on tongue, mouth.Has this
happened to anyone else? I wonder if I will start to feel
normal again after the HBO treatments? I am scared, but if HBO
helps the healing/pain I will feel back on the road of recovery.
Thank you, God Bless

Vicki

Karen Rose
You had 30 HBO treatments, how did the treatments make you feel.
Any advice on what I can do to prepare myself for these treatments.
I look forward each day that I am on the road of recovery.


Thank you, God Bless

Vicki

I completed 45 HBO treatments in 2008. My �treatments� lasted 90 minutes � by �treatments� they generally mean the time you are breathing 100% oxygen under pressure. You will be in the chamber roughly 2 hours allowing time to �dive�, time to return to normal pressure at the end, and two 5-10 minute air breaks during treatment. You will not be allowed to bring any personal belongings in the chamber with you and that includes your clothes, eye glasses, jewelry, etc. They will provide 100% cotton clothes for you to wear while in the chamber.

Being somewhat claustrophobic, I had some issues being locked in a chamber for 2 hours, and took some anti-anxiety medication before most treatments.

I started treatment at one facility, and finished at a different one. The second hospital had larger chambers with a flat-panel TV that was on rails on top of the chamber. The first facility had a TV mounted to the wall. Since I�m near-sighted I was not able to see the TV on the wall which made for a very long 2 hours in the chamber. Having the TV on top of chamber helped me complete my treatments. (I would bring my own DVDs to watch � would rent some of the long series I never had time to watch before.)

I had trouble clearing my ears at first, but my ENT put me on prescription nasal spray twice daily. I also used Afrin nasal spray about one hour before treatment. He also suggested �tubes� if I continued to have problems clearing my ears. Fortunately I didn�t need them. I also did the �ear clearing� techniques for the entire time on the dive down, and most of the time on the dive up. When I had problems with my ears, they would take me back up a little, and then take me back down but at a slower rate.

The treatments may also cause your blood pressure and heart rate to rise. They should take your vital signs before and after treatment. If you have high blood pressure you may want to discuss this with your doctor.

I also had blurred/fuzzy distance vision that lasted for about 2 weeks after treatment. The doctor that treated me said vision changes are sometimes permanent, but that is rare.

My doctors recommended I undergo HBO for two reasons: 1) I had a lot of problems after treatment including a very slow healing process and frequent mouth ulcers, and 2) showing signs of osteoradionecrosis (ORN). I�ve seen a marked decrease in the mouth ulcers, but it�s really hard to say if it helped slow the ORN at this time.

Good luck with your treatments!