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Osteonecrosis

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

Andy went to the periodontist today because he has been feeling exposed bone inside his mouth in the jaw bone. He was told it is osteonecrosis from radiation and/or the Xgeva shots he gets for bone metastasis. He will see an oral surgeon tomorrow but, the periodontist says there may be problems with healing in his situation. Any experience or tips with this would be appreciated!

Thank you,
Robin

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

given Andy's situation. There is a ton of literature available on this topic, and a lot of controversy. I will send you some that ratface collected, if i can get it to copy. Robin, I would move pretty slowly here. A very definite percent of patients with ORN will heal with just HBO therapy, and thereby avoid surgery. The surgery for this varies from debridement, to resection of the effected portion of the mandible, with bone grafting from the fibula. It is a very major surgery. I'll try to PM this stuff.

Best,

Pat

Mikemetz's picture
Mikemetz
Posts: 364
Joined: Nov 2011

My ORN started with the same ulcers inside my mouth. After three or four that came and went away naturally, the docs started to treat me for ORN. The HBO treatments were not effective in stopping the ulcers, but it did soften some of my neck tissue and gave me a little better range of motion and comfort in that area. I had 30 HBOs before a molar extraction, and 10 after. The molar socket has not healed in almost six months, and some dead bone tissue has flecked out. The pain level is a constant 3 out of 10, and spikes to about a 6 when a dead bone shard works its way out. Oral Roxicet has helped that a lot. In two days I have a debridement procedure to extract one more tooth and to scrape away any remaining dead bone. This is an important step. If the debridement works, the gum tissue will start to heal and my pain will start to go away. If it doesn't, then the next step is a jaw resecting that puts the problem into a whole different league of pain, complications, and lasting effects.

I would strongly agree with Pat's advice and take this very slowly to give each treatment step a long time to demonstrate results--even if the pain level escalates. The HBOs, in particular, take a lot of patience and dedication to get through, but if that's what the docs call for, hang in there with them. As a few people on this site have explained, you need to try to avoid the resecting until it is clear it's the ONLY viable option.

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

I appreciate your advice. Andy's appointment with the oral surgeon is today. He does have a bit of bone that has broken through the jaw and causes constant pain. He has oral Roxicet (or something similar...no Acetaminophen for him) and has only had to use it once a day, but I'm quite concerned about how this condition progresses.

May I "friend you" so that we can stay in contact concerning your treatment and his?

Best wishes to you,
Robin

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

I'd friend him whether he wants it or not. A guy can't have enough friends when this crap is going on:)

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

Seriously, I don't know what I would do without the friends from CSN. This is the best place I visit each day! I am a huge fan and extremely grateful to the friends I have met here.

Mikemetz's picture
Mikemetz
Posts: 364
Joined: Nov 2011

My debridement was postponed a day before it was scheduled. From what I understand the two involved doctors were not able to get together for a consultation to come up with an exact plan for the procedure. In the five weeks leading up to the scheduled procedure, my wife and I were pretty well prepared for this, and looking forward to getting past this step--so the news did not make us happy. No new date for the procedure.

Robin,

I did friend you and sent a private email. Let me know if I didn't do those things right to put us in touch.

mike

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

Not easy to deal with these bumps in the road. I'm sorry for your postponement but glad they will be sure to have their act together before they treat you. Please keep us updated and we will be wishing you a successful procedure!

Robin

Mikemetz's picture
Mikemetz
Posts: 364
Joined: Nov 2011

I am now scheduled for my debridement on April 18, with 10 HBOs to start the next day. And, none too soon. My pain level without meds (oral Roxicet) is nudging up and I can feel a new bone shard getting ready to release--that's when it hurts the most. The Roxicet works well, but after a while the associated dizziness gets a bit hard to deal with. It's just time to get this chapter of the battle over with and see what's ahead. It will always be "something" but I could use a change from this situation soon.

Mike

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

Andy's pain has increased and he was advised to take the pain Meds "as needed" until he sees a specialist next Tuesday. Sooo....we are coping until then to get a definitive diagnosis in regards to the jaw bone issue. Also will be waiting until Monday for his scan results from today's scan. No pressure here, right? My, my

Thank goodness for 6 month old grand baby to bring joy to our lives!!!

Hang in there Mike!!!

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

That wouldn't sit well with me either.

Sam44646
Posts: 9
Joined: Feb 2013

Hi.  Kinda new to CSN.  I'm almost 2 years into tretment having undergone chemo and radiation to my left lower jaw.  I had a debridement done but that led to a fracture in the same spot.  I am now scheduled for a Fibua Free Flap surgery.  Obviousally that has me/us very concern.  I could use some words of encouragement as I don't really have much say anymore in fighting this beast.   Sam

longtermsurvivor's picture
longtermsurvivor
Posts: 1845
Joined: Mar 2010

I'll give you a word or two of encouragement.  The surgery will very likely succeed.  Surgically, this is a pretty extensive thing, as you know.  I've been through the surgery, except my flap was from the forearm instead of the leg.  The reason for this is that the surgery was for a different type of reconstruction than you are having.  Even so, it was about the same as what you are having.  Mine took about 14 hours, with a hospital stay of 9 days, a tracheostomy  and a feeding tube.  The usual stuff.  It was survivable.  The pain meds worked well, and the care was pretty good, and I went home and convalesced.  So will you.  Keep the faith man.  When you post, go ahead and start new threads.  They will get more attention, and anything you wanna talk about is just fine on this board.

 

best to you.

 

Pat

Sam44646
Posts: 9
Joined: Feb 2013

Thanks for chimming in.  Just when we thought the worst was behind us...........................................

ljoy's picture
ljoy
Posts: 91
Joined: Dec 2007

Four and a half years after tonsil cancer treatment another phase of the cancer journey entered my life. While eating I bit down on a piece of food and felt what I thought was a loose crown.I immediately made a dentist appointment.

A quick exam revealed a loose tooth as opposed to a loose crown. The x-ray showed tissue and bone deterioration around and under the tooth. (radionecrosis) It was my right lower jaw tooth. It is also the side I received the most radiation (7200 rads). My dentist referred me to an Endodontic specialist for a root canal. Based on the x-ray and oral examination he was not sure the deterioration was caused from a root problem.

I decided to seek a different opinion at this point. I met with the Radiation Oncologist at the cancer center where I volunteer and serve as a mentor for Head and Neck patients. He referred me to an oral surgeon who treats a lot of cancer patients. After further examination he determined it was radionecrosis (tissue damage from radiation treatment). Even a lay person can see on the x-ray the change in the bone and tissue around the tooth.

I had thirty HBO treatments and then oral surgery to remove the tooth and debried the bone. Another ten treatments after the surgery to help promote healing of the bone and tissue. If they pull the tooth before the hyperbaric treatments they are convinced it will not heal.

The good news is the treatments were painless. The treatments are an hour and fifty minutes. The chamber holds 8 - 10 patients per session.

This has nothing to do with good oral hygiene after treatment. So everybody please continue to be diligent in checking your mouth for any potential problems. I feel my regular dentist could have done a better job. I had a checkup and cleaning in early December and the loose tooth was not detected. Perhaps we all should consider annual x-rays to look for tissue and bone deterioration from radiation. I have since switched dentist's to one who specializes in comprimised dental cases.

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

Thank you for sharing your experience. I am trying to learn all I can and try to find direction. At this point, I don't even know where hbo treatments are available for us but I will surely find out soon!
What an amazing site this has turned out to be...I suspect that I will have more questions before we make a decision about how to treat this.
Much appreciation,
Robin

robinleigh's picture
robinleigh
Posts: 297
Joined: Mar 2011

I have received great information from longtermsurvivor, mikemetz and rat face. Amazing how you find what you need right here! Thank you all. We won't have an official diagnosis and plan of action until April 2nd so I will keep you posted.

Thanks millions!

hwt's picture
hwt
Posts: 2119
Joined: Jun 2012

I'm doing HBOT now. Had my 7th tx this morning. Other than very time consuming, the tx would be a breeze except for my kidney stone that decided to rear it's ugly head. Right now I am going in the chamber and have a stent that puts me in orbit...thrilled that it comes out tomorrow. Where I go, there are 4 individual chambers. I had cancer of the mandible, 19 hour surgery with fibula flap, 4 days induced coma total 2 weeks in hospital. Trach came out b4 I left the hospital and I had a feeding tube thru chemo and rads. I actually only recall about the last 2 days in hospital, the rads/chemo seemed much worse. I'm doing the HBOT now to have some more teeth removed and implants with a denture. Hopefully, the final leg of this journey. Well, we all know the rads forever take their toll but for now, this is the final step. If I had overs, I would investigate Mayo in Rochester and a new method that does not involve the fibula. My leg is fine now but it took months of nursing to heal up. I am doing 20 chamber tx then dental surgery then 10 more chamber tx. You are very fortunate to have that little 6 month old to brighten your days and be a constant reminder of why we do whatever we have to in order to be here with them. Children bring so much joy! 

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