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#199332 10-27-2019 01:08 PM
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Hi not sure if this is correct and looking for some feedback. I am 10 years out of radiation and watching my teeth literally crumble out of my mouth. My current dentist does nothing but a cleaning every 3 months. I am allergic to a lot of things including fluoride treatment My regular oral surgeon at MGH Boston who pulled a couple of teeth after HBO is stating that currently my health is at too much of a risk to pull any teeth out. I am very thin only 88 pounds and no one can find out what is wrong. I got another opinion at Brigham & Womens Oral Medicine dentist who said that HBO is being questioned that it is questionable that it is working for pulling teeth. I am very distraught and in a lot of pain and the color of my gum looks red and not good. I am looking for any advise and thinking maybe I should just do the HBO and have all my teeth out and be done with it. Please any feedback would help don't want an infection to go any further than what I have now which is trobbing or worse. Thanks Michele


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
msweet2995 #199347 10-29-2019 09:17 AM
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Patient Advocate (old timer, 2000 posts)

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Hi Michele!

You are not alone in this!!! Ongoing dental issues plague a great many long term OC survivors! The Marx Protocol doing 20 HBO dives before an extraction and 10 after has always been scrutinized, thats nothing new. One doc will take one side and the other doc takes an opposing view which only makes it more difficult for patients to figure out what is their best option.

As far as having all your teeth removed... thats NOT an easy path either!!! What brought you to this option tells me you are really struggling significantly with your teeth or you never would consider something so extreme.

This is usually done in the hospital's OR and you can expect to stay overnight at least one night as it is considered major surgery. I seem to remember you having trismus which further complicates removing teeth so what seems like a simple extraction may still need to be done in a hospital rather than in a doctors office as most routine extractions are done.

Im sorry I dont have more info to pass along!!! As always... best wishes with everything!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #199352 10-30-2019 09:51 AM
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Hi Christine, I was going to ask the oral Surgeon that question but he refuses to even pull one bad tooth because of my current year old health problem. He is saying that it will just fall out eventually, meanwhile I have a infection going on and have bone loss, also tingling and pain. I am scared to death of ORN. I a very thin and have a histamine problem with a lot of foods and severe stomach pains. Take care Michele


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
msweet2995 #199581 12-07-2019 06:37 PM
Joined: Dec 2019
Posts: 5
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Posts: 5
My doctors also wanted my loose teeth to fall out on their own. For me, there came a time for those teeth to be extracted and have the bone infection removed. However, my ragged radiated tissues are not ready for a partial or dentures on top of the implants. I found that just because the implants are there or the teeth are removed doesn't mean the incision or wound will heal in time to meet your expectation for a denture. I started with the 20/10 protocol and ending with the 20/40 protocol two bone coring infections are present at the same time. But, I mentioned above, it's too heavy for my set of shoulders. I can do my best and what will be will be.

I don't know that I can offer any comfort other than, I care. I'm 23 months post treatment. I just finished treatment 43 of HBOT and have 17 more to go. My teeth are not 'literally crumbling' but they are loosening and falling out since radiation treatment. I'm not able to handle mints or the dental trays for fluoride so I use a childs toothpaste which is higher in fluoride than some others. It's frustrating. Right now, I'm simply prioritizing the medical challenges and putting one step in front of the other. I can't control it. But I also can't carry it. It's all too heavy. I care. You're not alone. But, it's certainly not a club we want anymore members to join, that's for sure...

hugs.

PS - and my care team is split as far as the benefits to be received from HBOT.


Last edited by ChristineB; 12-08-2019 06:47 AM. Reason: combined posts

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