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Soft Tissue Necrosis!

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Hey went for check up Monday and today! Saw ENT on Monday and Radiation Doc today. I was concerned about irritation on Right side where I got most of the radiation in mouth. The ENT said it was just healing still from Radiation treatment; that everything was healing good. Radiation team said I had a tiny amount of bone exposure related to soft tissue necrosis right around my back molar. That it wasn't a major concern but they wanted to keep an eye on it! I thought I was doing so well. I was even starting to eat pasta and yogurt! Has anyone ever heard of having this problem? Concerned in Rochester!!!:(

Charles

miccmill's picture
miccmill
Posts: 248
Joined: May 2010

Are you sure you don't have some soft tissue necrosis? That would sound like a more likely reason why you would have bone exposed at this point.

JoAnn used you as an example for Glenn of someone who is doing well at this point.

MarineE5
Posts: 762
Joined: Dec 2005

Charles,

I would recommend that you stick with soft foods for awhile, like you are doing. When you brush after each meal, use a very soft tooth brush. I have used the Oral B battery operated tooth brush since my radiation and have had clean Dental Exams since. Just go over your teeth lightly with this and it does a good job without too much pressure. Your mouth has taken a beating from the radiation and our gums are tender.

I was in a hurry to eat something crunchy and ended up cuting my gums and it took forever for them to heal, so now I am careful about what I eat that could be harmful to my gums. Just another adjustment in the " New Normal " for all of us.

My Best to You and Everyone Here

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

All I know know is he said the word necrosis and my Nursing mind went racing!!!! They said it wasn't a major problem yet; but we had to keep and eye on it. Joanna said they usually resolve with in 4-6 weeks. I just don't want to end up losing my Right mandible! I was freakin out. I'm tired of surprises I just want to heal!! Thanks guys! I'll try to relax; may have to pop some ativan! :)

Charles

MarineE5
Posts: 762
Joined: Dec 2005

Charles said --Thanks guys! I'll try to relax; may have to pop some ativan! :)

After everything you have been through, down the road, you may pop a few brewskis instead : )

Skiffin16's picture
Skiffin16
Posts: 8103
Joined: Sep 2009

I'll toast one to you Charles....

Best,
John

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

I am 5 yrs away from treatment and have recently been told my teeth, especially my upper ones have been affected. I am now with the hospital after a dentist told me all my teeth would have to be removed, I freaked. The hospital are now trying to help me save them. It is an ordeal as I have compromised taste and luv sweet things. I have been told no sugar, only spendour as necrosis will occur. I am having flouride trays next week. I have to brush after eating, and use Flouraguard 3 times a daily and I have a small tube of paste to rub on gums everyday. I also use MI paste and GC dry mouth gel, so I am kept fairly busy lol. Obviously i have to use tippees everyday as well. When I heard the word necrosis I freaked out, but hopefully all will be ok for a few years if I do as I am told, which has always been a difficulty for me lol.

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Thanks Again for the replies! I guess I freaked when I heard necrosis. Like everyone else all I can do is what they tell me and hope and pray for the best out come!!! Hope evryone is having somewhat of a normal weekend! Hugs!

Charles

hawk711's picture
hawk711
Posts: 532
Joined: Jan 2010

Hi Tricia
I see you use GC and MI??? What the heck is that, I have dry mouth most of the time, 4 months out of treatment and can't get enough saliva to swallow food or even spit !!

Any ideas you can give me on your dry mouth is much appreciated. I don't use Flouraguard now. Is it a prescription paste or over the counter?

Sorry to hear about your teeth. I haven't even thought about my teeth lately as I still use a PEG for most nourishment to date. I eat yogurt, eggs, soup, blah, blah, but am waiting for that first slice of pizza, loaded with the works!

Good luck with saving the teeth, I hope the hospital can work wonders.
All the best,
Steve

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Steve,

Your Saliva has essential enzymes that normally protect your teeth. Becasue you have little to no saliva, this can be a problem. You can use a 'gel' which is like artificial saliva or a lubricant. Biotens and GC make these amoung others manufacturers. GC also make a mousse (GC Mousse) which is to be used at night (rub around your teeth and gums) to further protect your teeth from attck.

You need to be meticulous with bruching after eating every time and floss at leats once a day. best use a soft brush to avoid gum damage. Use a flouride mouth wash at least once a day and as Tric says, you can get flouride trays.

I got Acupuncture to try to regain some salivary gland function. I now get enough to wet my teeth and if I keep my mouth closed, can keep my mouth moist. I still need water or soup when I eat, but I have regained about 10-15%. hoping for more.

Scam

sabriene
Posts: 27
Joined: Aug 2006

Tricia, I am also near the five years with stage four of the mouth and tongue area. As I am sure this is not new news to you but the recovery was living hell for awhile. Then things just sort of leveled out to where I was doing pretty well. Then next the crowns on my teeth started falling off and etc. The rad. doc wanted all teeth removed at onset but oral surgeon told him would take to long to heal so he agree with the rad. treatment. Were your teeth like mind in very good condition prior to treatment? To make a long story short now the oral surgeon is saying due to maybe infection they suggest to remove all teeth and not just the one giving trouble. Reading you note sounds like you are like me for don't want to loose your teeth. Then awhile back I had a converstaion with the dentist assistance and she was telling me in the past she has found people with are situations find it very hard to use dentures due to lack of salvia. Have they mentioned this to you? Seems like we just get one fire put out and up comes another one.

Tricia02's picture
Tricia02
Posts: 130
Joined: Mar 2009

I am in the UK Hawk, GC is a gel for dry mouth and MI is phostate and flouride. Seems i have to use loads of flouride now. My teeth were good yes before treatment, mostly crowns and bridges though at the top. They have said to me dentures will be difficult due to lack of saliva and also very difficult for them to fit properly over time using them, as gums and bones are constantly changing. I am due back at hospital on the 20th and will make notes this time, as I am finding it difficult to digest everything they are telling me. I didn't have tongue cancer, i had nose cancer and what is confusing me is the radiation was targeted to the nasal septum. I understand there may have been "scattering" of radiation but I am wondering if the dentist at the hospital understands my treatment. I may have to ask hospital to liaise with my oncoman. My cancer was very rare which makes me wonder do they really know what they are talking about, or are they treating me in a similar way to a tongue cancer survivor. If they are then I believe they may be wrong in their assumptions and of their intended treatment for me. Apologies if I waffled a bit but its difficult to describe what i mean lol. Anyway will keep you posted as to my treatment with the teeth. I am also being put on thyoxine as I have also just discovered i have an under active thyroid! Oh the joys of recovery lol.

ljoy's picture
ljoy
Posts: 90
Joined: Dec 2007

I posted this before but thought it might be of interst to all of you.

Four and a half years after tonsil cancer treatment another phase of the cancer journey has entered my life. While eating a few weeks ago 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. It is 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. However, based on my history and wanting to do everything possible to save the tooth he preceded with a root canal. Afterwards he suggested I see a peridondist as well.

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 has determined it is radionecrosis (tissue damage from radiation treatment). Even a lay person can see the change in the bone and tissue around the tooth.

I began Hyperbaric Chamber treatmenta last week. I will have thirty treatments and then oral surgery to remove the tooth. Another ten treatments will be necessary 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 are painless. The treatments are an hour and fifty minutes. The chamber holds 8 - 10 patients per session. I have had a little problem keeping my ears clear from the pressure. It is suppose to get better as I complete more treatments.

Hopefully, the hyperbaric treatments will restore circulation to the damaged area. This will reduce the amount of dead bone to be removed during surgery and help the area to heal properly afterwards.

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.

It is also very interesting that three other patients receiving treatments for the same reason. I will post an update once I finish to let all of you know how successful the treatments were in preventing further problems.

The treatment was successful and my surgery has healed just fine.

PattyNC's picture
PattyNC
Posts: 65
Joined: Oct 2006

Mikey had 40 hyperbaric treatments but unfortunely he did eventually have to have all teeth removed. On the side where he rec'vd rads ... he now has severe jaw bone deterioration & is not able to have dentures. On the plus side, he had PET Oct 09 which came back all clear. He also is able to eat a surprising variety of food (we just cut it up in teeney tiny pieces & he can still wolf down a steak like in the good old days). Cosmetically ... losing the teeth was a hard blow to his vanity, but health-wise it was the right choice (& the only choice).

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