It is great news that Steve�s scans showed no evidence of cancer Wendy.
I can only imagine the relief you would have had hearing this.
Sorry to hear that he still has so many issues with his jaw. I have read all your posts and just checked back on an earlier email so I know the issues you had when you tried to get him to have HBO at the Prince of Wales hospital this time last year.
As you say it is still one step at a time and the tests need to be done first. Hope he continues to be pain free.
Love to you both
Gabriele

Thanks guys, hopefully it will all work out ok. I have a plan to get him to do HBO if it's needed. Hopefully I'll be able to put it into action and we can avoid a reconstruction. Gabe I remember this time last year very well. Nothing has changed worse luck, just more damage to his jaw bone. Christine I think the same as you do, it's more than likely his jaw bone took the brunt of the radiation. Even the doctor's think this but just want to rule out the possibility of the cancer being present because it was there to start with. I also don't think they want to put him through a reconstruction without knowing if there is cancer there. Which sounds like a good idea to me. Don't know why this wasn't done a year ago when this issue began. Anyway fingers crossed everything comes back clear and that I can get him to HBO.

Hi Wendy,

My husband dealt with the same problems that Steve is facing. He hated HBO treatments too. But, it provided great benefits...more long term benefits than we realized at the time of the treatment. I hope you don't mind if I share this story, as it may help you to convince Steve to go through with the treatment.

After undergoing 67 HBO treatments, my husband's jaw continued to deteriorate and eventually broke. So, he had surgery to replace part of his mandible with a titanium plate. A week after the surgery, he developed an infection in the surgical site and a fistula (hole) in the back of his mouth. The doctors' first thought was to remove the titanium plate and let the infection and hole heal before putting the plate back in (two more surgeries). My husband did not want more surgery, so he asked the surgeon to try whatever he could to avoid it. They put him on IV, then oral, antibiotics and sent him for 20 more HBO sessions. This time, we drove an hour each way so he could go to a different hospital with a multiplace HBO chamber, which was less claustrophobic than the monoplace chamber. All the doctors involved said that the treatment plan was a very long shot. But, it worked!! The infection was cured and the hole healed. The reason this worked is because the HBO treatments had improved his blood flow to the area enough that he was able to beat the infection. Without the prior and current HBO, he would have faced two more surgeries. Now, he is very glad that he continued with the dreaded HBO treatments.

The benefits of HBO treatment are lifelong. And the increased blood flow may be helpful in ways that you may not even be contemplating yet. (It also caused his hair to grow, in case that offers some additional incentive!)

Good luck with convincing Steve to go forward.

Hi Wendy

If Steve was reading this thread I would say to him;

I suggest you get medication immediately to help get you through the anxiety of going to HBO treatments. If it is ORN, the bone WILL NOT heal by itself. You are not only being stubborn, but also foolish. You should follow your medical team's advice.

The more you do NOW to help with healing, the less pain and stress you will be creating for yourself further down the track. No one wants to continually put themselves through treatments, but sometimes we HAVE to do things we would rather not. Osteonecrosis can spread through the bone. The treatment is similar to the removal of cancer. The surgeon will keep removing parts of the jaw bone until he/she can get clear healthy bone with good blood flow. The less bone removed, the less amount of bone will need to be replaced. Obviously this means a shorter recovery and healing time. The more you do to help yourself now, the better you will be later.

Having the jaw (mandible) replaced and reconstructed due to ORN or cancer is treated the same way. The treatments are brutal. Once our bone structure is cut and shut, it can be a long horrible process recovering. It can cause permanent life changing damage.

Karen

Thanks for your advice everyone. I know this treatment works and I'm pretty sure Steve is aware, or starting to be aware, of how well it works and that the alternate is not worth contemplating. It's not HBO as such that gives him severe anxiety attacks. It's sydney. He's a country boy and doesn't cope well with crowds. He's shy also and likes his space. I know this sounds silly when you consider what he's been through but of all his strengths, big cities aren't one of them. It's really debilitating for him. But I do have a plan. Where we used to live has a HBO chamber as it's the major hospital near the Great Barrier Reef. Townsville is no where near as big or as busy as Sydney. We were thinking of going home so this just gives us even more reason to follow this idea. The treatment will be no more than a 10 min drive from where ever we live so it will work out well for Steve. Alot, lot less stressful. Still waiting to hear from the hospital as to dates for his pet and biopsy but this is something I will be putting forward to them with regards to hbo when the time comes. Fingers crossed all of this works out for us. If not I'll drag him to sydney, anxiety tabs to the hilt if I have to. One way or another I will get him there.

Wendy, your idea of going back home sounds like the perfect solution to Steve's big city phobia. Im not a fan of large cities myself so I do understand it. I grew up in a tiny town that wasnt on most maps, it had about 100 people. Everyone knew everyone else, no crimes every. It was a very nice place to grow up. I dont like the noise and forget about me driving in a big city! Im an accident waiting to happen. I hope that everything works out for you. Its been a long road and hopefully the HBO will fix him up! I had to do a picc line with IV antibiotics for aprox 8 months along with many HBOs to finally heal. My situation was a different type of healing, it was for a long tunnel wound from the 2009 mandibulectomy. My point is that dont be shocked if the doctors suggest doing an IV antibiotic if they think he has an infection.

Hope everything works out for you and Steve. Wishing you both all the best!!!

Hi Wendy,
Sorry to hear about Steve's jawbone. My situation is similar right now. My jawbone is disintegrating and infected. Last week I had a PIC line installed to administer IV antibiotics daily. The pain in my ears is starting to ease. I have an appointment with my local HBO hospital on Monday. This will be my second HBO program in 7 months. My ENT was straight forward and told me if this doesn't work there will be trouble and pain ahead. My fingers are crossed for Steve and you. Best of luck to you guys.
mark

thanks for your comments and thoughts Christine and Mark. It's always comforting and less stressful for me to have you guys here that have been through this and can let me know what to expect. HBO is our last option before reconstruction so we have to do this. But first things first. Pet scan and then biopsy to see where we go next. Then HBO will be on the agenda if all comes back ok. PET scan is tomorrow, not sure on the biopsy yet. I have to do some ringing around to find out appointment times. Even though we were told they would ring with them, so far they haven't. We don't even have an appointment to find out the pet results as yet which is unusual. But I'll worry about that next week. Get the pet out of the way first. Mark I hope HBO works for you this time.