Osteoradionecrosis

debbiel0

Wow! Thought I was in the clear! Three weeks from  my fourth year NED report! Now I have something else to deal with! Osteoradionecrosis! Quite the mouth full, literally!

I have options of , hyperbaric chamber and surgery to do skin graphs, or chamber alone, or try meds to help encourage blood flow.. anyone out there have any advise?  

wbcgaruss

Debbie I Would

Recommend doing the HBOT and meds and if that doesn't work out you still have the skin grafts and surgery to fall back on. How did you get  Osteoradionecrosis?

And Debbie let me say I am so sorry you have to deal with this but stay strong girl you can do this and you will. What you have I guess is the gift that keeps on giving syndrome of radiation treatment.

This treatment is not guaranteed to eliminate all problems but it is our only real option to avoid problems or help a problem area heal up.

Around or between Sept. to Nov. last year I received HBOT treatments in preparation for a tooth removal. Thankfully it worked and my extraction healed up perfectly. That is not to say that HBOT is a guarantee you will heal well or have good healing as there are no guarantees that if you do the therapy you will be fine. I would describe it as our best possible option to achieve a good outcome. If you go with the HBOT first have your ears checked and if you have any wax blockage or problems get them cleaned out and or fixed before starting HBOT. I started HBOT and soon thereafter had an apt. with My ENT and I asked him to check my ears and he did and had to clean out some wax from one side. The next HBOT I had was much better as when they are putting the chamber under pressure and your ears will feel it as pressure and if blocked at all will make it worse and usually swallowing for a short period takes care of it and once pressurized you are good for the rest of the session till they depressurize the chamber and reverses the procedure.

Here's an extract from my personal page--

I had a tooth bothering me and X-rays showed the tooth needed to come out.
The oral surgeon who was going to pull it wanted me to get HBOT therapy (Hyperbaric Oxygen Therapy) before I had it pulled to hopefully avoid osteoradionecrosis (ORN), or bone death of the jawbone. At first, I said well just pull the tooth but he seemed very concerned about it and concerned for me so I agreed to get the HBOT. Glad I did.
I got 30 treatments and had the tooth pulled and it healed up no problem, Praise god what a blessing.
I was to get 10 more as a follow-up and had gotten 6 after the tooth extraction and found I couldn't keep my eyes open after the treatment like when you are really sleepy and your eyelids just go shut and also had gotten double vision.
So I stopped the rest of the treatments and had gotten all but 4 done. My double vision lasted for 2 weeks but my vision never returned to the baseline. They told me these treatments can affect your vision but my situation was an unusual case they said as per the effect it had on my vision.
I finally got to see an ophthalmologist recently for an eye exam and get new glasses prescription and he recommended I have my cataracts done in 6 months. I think the HBOT treatments accelerated my cataracts.

Below are 2 links I have kept as a reference for HBOT info--

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/hyperbaric-oxygen-therapy

and--

https://jcda.ca/g24

Wishing You The Best-Take Care-God Bless-Russ

 

debbiel0

wbcgaruss said:

Debbie I Would

Recommend doing the HBOT and meds and if that doesn't work out you still have the skin grafts and surgery to fall back on. How did you get  Osteoradionecrosis?

And Debbie let me say I am so sorry you have to deal with this but stay strong girl you can do this and you will. What you have I guess is the gift that keeps on giving syndrome of radiation treatment.

This treatment is not guaranteed to eliminate all problems but it is our only real option to avoid problems or help a problem area heal up.

Around or between Sept. to Nov. last year I received HBOT treatments in preparation for a tooth removal. Thankfully it worked and my extraction healed up perfectly. That is not to say that HBOT is a guarantee you will heal well or have good healing as there are no guarantees that if you do the therapy you will be fine. I would describe it as our best possible option to achieve a good outcome. If you go with the HBOT first have your ears checked and if you have any wax blockage or problems get them cleaned out and or fixed before starting HBOT. I started HBOT and soon thereafter had an apt. with My ENT and I asked him to check my ears and he did and had to clean out some wax from one side. The next HBOT I had was much better as when they are putting the chamber under pressure and your ears will feel it as pressure and if blocked at all will make it worse and usually swallowing for a short period takes care of it and once pressurized you are good for the rest of the session till they depressurize the chamber and reverses the procedure.

Here's an extract from my personal page--

I had a tooth bothering me and X-rays showed the tooth needed to come out.
The oral surgeon who was going to pull it wanted me to get HBOT therapy (Hyperbaric Oxygen Therapy) before I had it pulled to hopefully avoid osteoradionecrosis (ORN), or bone death of the jawbone. At first, I said well just pull the tooth but he seemed very concerned about it and concerned for me so I agreed to get the HBOT. Glad I did.
I got 30 treatments and had the tooth pulled and it healed up no problem, Praise god what a blessing.
I was to get 10 more as a follow-up and had gotten 6 after the tooth extraction and found I couldn't keep my eyes open after the treatment like when you are really sleepy and your eyelids just go shut and also had gotten double vision.
So I stopped the rest of the treatments and had gotten all but 4 done. My double vision lasted for 2 weeks but my vision never returned to the baseline. They told me these treatments can affect your vision but my situation was an unusual case they said as per the effect it had on my vision.
I finally got to see an ophthalmologist recently for an eye exam and get new glasses prescription and he recommended I have my cataracts done in 6 months. I think the HBOT treatments accelerated my cataracts.

Below are 2 links I have kept as a reference for HBOT info--

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/hyperbaric-oxygen-therapy

and--

https://jcda.ca/g24

Wishing You The Best-Take Care-God Bless-Russ

 

Thanks Russ.  

Thanks Russ.  

My ORN is due to radiation. 

For me to do the HBOT it would mean staying out of town for the duration as the closest  place for treatment is  about a two hr drive and a two hour Ferry ride away. Not easy to do a return trip in one day. So I am really wondering if it is worth the expense right now. 

I am leaning towards giving the meds a decent try first, as much as it seems like a drawn out process.  I see the specialist again in two weeks, so I will hold my decision until then, hopefully some of this will heal on it's own. 

Thanks for your input. Greatly appreciated

wbcgaruss

WOW Debbie

I feel blessed after hearing that. I have such good access to health care. My HBOT treatment was only a 25-minute drive away. You must be in a really out-of-the-way area. No problem there though as there are definitely benefits to that. Debbie Wishing You The Best in your decision and treatment and that you will overcome this one more hurdle we cancer folks run into. Take Care-God Bless-Russ

Logan51

Question

Do you know how many Gys you got to your jaw area? I had 56. My Dentist went to a seminar @ the U of Iowa University Hospital, and they said 60 or more sets One up for potential Osteoradionecrosis. 

Your getting it from Rad damage to the little blood vessels in the jaw and going to the teeth so soon does surprise me. Think Sash and a few others have had to deal with it on the Operating table. My ENT told me that most have a minimum of 10 years to prepare, with 12-15 being the time frame most common.

debbiel0

Logan51 said:

Question

Do you know how many Gys you got to your jaw area? I had 56. My Dentist went to a seminar @ the U of Iowa University Hospital, and they said 60 or more sets One up for potential Osteoradionecrosis. 

Your getting it from Rad damage to the little blood vessels in the jaw and going to the teeth so soon does surprise me. Think Sash and a few others have had to deal with it on the Operating table. My ENT told me that most have a minimum of 10 years to prepare, with 12-15 being the time frame most common.

I do not recall what my Gys

I do not recall what my Gys was, but I know it was high. I will ask that question at my next appt. I always like to be early for things, but this one is a drag, for sure! Maybe I should try to be a little on the late side from now in! ?‍♀️

debbiel0

wbcgaruss said:

WOW Debbie

I feel blessed after hearing that. I have such good access to health care. My HBOT treatment was only a 25-minute drive away. You must be in a really out-of-the-way area. No problem there though as there are definitely benefits to that. Debbie Wishing You The Best in your decision and treatment and that you will overcome this one more hurdle we cancer folks run into. Take Care-God Bless-Russ

Island life has its

Island life has its advantages for sure, especially if you are healthy!  We got a PET Scan machine in the last year or so, so things are getting better. HBOT is not a common treatment plan here, so the facilities are few and far between. 

It's just one glitch in an otherwise pretty good life. 

Mikemetz

debbiel0 said:

I do not recall what my Gys

I do not recall what my Gys was, but I know it was high. I will ask that question at my next appt. I always like to be early for things, but this one is a drag, for sure! Maybe I should try to be a little on the late side from now in! ?‍♀️

My ORN

Sorry to be late to this thread but I don't get on CSN much these days.  My ORN started only about 6-8 months after my rads treatments.  First a few ulcers in my mouth, then more of them and they got bigger, until large bone shards started to pop out.  Eventually I had to have my left jaw bone resectioned with my left fibula.  During the surgery they discovered that my left jaw bone was actually broken. I say this not to scare you, but to encourage you to do whatever you can to avoid this becoming a surgical solution.

I had HBOT but came away thinking it was a waste of time and my insurance company's money--but then mine was way more than a dental problem, like Russ's.

The real tricky thing about ORN is that they can't tell much from x-rays and scans and that it can get worse without you or your docs knowing it.  The only real way to detect is is with exploratory surgery, but that presents many (and expensive) problems of its own.

I would urge you to get a second doc to look at your ORN--someone who has LOTS of experience with it, and someone who can give you all of the options, and all of the +s and -s of each one.  The worst thing you can do is wait, because if it's still active, it will only lead to fewer and more costly options. Feel free to PM me if you want to.

Mike

debbiel0

Mikemetz said:

My ORN

Sorry to be late to this thread but I don't get on CSN much these days.  My ORN started only about 6-8 months after my rads treatments.  First a few ulcers in my mouth, then more of them and they got bigger, until large bone shards started to pop out.  Eventually I had to have my left jaw bone resectioned with my left fibula.  During the surgery they discovered that my left jaw bone was actually broken. I say this not to scare you, but to encourage you to do whatever you can to avoid this becoming a surgical solution.

I had HBOT but came away thinking it was a waste of time and my insurance company's money--but then mine was way more than a dental problem, like Russ's.

The real tricky thing about ORN is that they can't tell much from x-rays and scans and that it can get worse without you or your docs knowing it.  The only real way to detect is is with exploratory surgery, but that presents many (and expensive) problems of its own.

I would urge you to get a second doc to look at your ORN--someone who has LOTS of experience with it, and someone who can give you all of the options, and all of the +s and -s of each one.  The worst thing you can do is wait, because if it's still active, it will only lead to fewer and more costly options. Feel free to PM me if you want to.

Mike

Thanks Mike, I appreciate

Thanks Mike, I appreciate your upfront opinions.  I am trying my best for now with drugs and mouth washes. I will definitely be aggressive on my next appt with questions.  I do not have much faith at this point, but another two weeks might turn the tide!