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Have any of you gotten 2nd and 3rd opinions only to find they don't all agree? I started seeing a new dentist on January. Previous to that I supposedly was not having any issues. Since January I have had 8 cavities and an infection. The 8 cavities, 1 had to have a crown. I started root canal treatment yesterday. Prior to that I got several opinions. The new dentist said infection, 2nd opinion said possible necrosis, and 3rd opinion said infection but could be osteomyelitis. Still need root canals, but may not work and time would tell. I went ahead with root canal, but I am still so unsure of really what the issue is. Dentist who did root canal did look at CT the Oral surgeon did..He said that the infection may have spread from original tooth. I was antibiotics. If infection spread while on antibiotics wouldn't I need stronger?

I also asked Oral surgeon about HBO. He said since I had it in 2010, I wouldn't need it again. I know that's not true. I have talked with my HBO Dr and waiting on a call back from her office to schedule an appt to determine if HBO is needed. She believes I do. So frustrating when they all don't agree.

Nice to see many of you again .



Last edited by walknlite; 04-21-2017 05:21 PM.

Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Hi Angelia! Im sorry to read about your dental issues. Do you have and use a waterpik? They work wonders!!! If you use one, do you mix your non-alcohol mouthwash with water? It may help get between your teeth and help you avoid cavities. Are the dentists you have seen all experienced in treating OC patients? Even though you had OC years ago you still went thru those brutal radiation treatments that can have side effects pop up even several years later.

As you are finding out, dental work and needing HBO is something everyone will tell you something different about. As far as HBO goes, from what I know its not necessary for having a root canal or fillings. If you need something more invasive like a tooth removed or if you have problems that requires surgery (ORN) then yes you would need HBO (even if you already did it a few years earlier). HBO does last for a while but there are many opinions on exactly how long its good for. From what Ive read about HBO (years ago before I did HBO) it has been shown to help heal infections. Maybe HBO would help with whatever you have going on? If the dentists dont know what is going on in your mouth and there is something they can see maybe they should take a tiny sample and send it out to the lab to get checked. There would be a big difference in how you were treated if it was an infection or if its necrosis. Another reason to have it sampled would be to ensure you were on the correct antibiotic that works best for whatever type of infection you have. Not all antibiotics work the same on different things. Maybe you dont need a stronger antibiotic but rather the right one that works best on what you have.

Not sure how much help I was but I tried. Hope you and your family are all well. I bet those kids are getting big smile



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
Joined: May 2009
Posts: 1,412
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Christine,
We are all doing well at the moment.

As far as seeing a dentist very familiar with OC there aren't any that I've been able to find. I had one last year that said he was, but works never take care if any issues. He just wanted to watch. I was tired of watching and waiting so I found the current dentist I am going to. He is very thorough, but something didn't sit well with me when he said I needed a root canal for an infection. I decided to go get a second opinion and that second opinion said it didn't present as infection and needed to see an oral surgeon and said a biopsy to see what's going on would be best. I went to the Oral surgeon my ENT and RO referrer me too. He said it was virtually impossible to get spontaneous necrosis. I don't know if I buy that story. He did say it could be osteomyelitis, but the root canal would tell us more. Said root canal was least invasive. I am very tempted to go to TX to dental oncologist there to get an opinion.. I hate the feeling the everyone is just guessing.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
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If you are not comfortable with what the 3 have told you then it makes sense to seek further opinions. I would never advise going thru any type of procedure (dental or medical) when you have no faith in what you were told you should have done. Isnt there any closer to where you live?

Best wishes!


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
Joined: May 2009
Posts: 1,412
Patient Advocate (1000+ posts)
OP Offline
Patient Advocate (1000+ posts)

Joined: May 2009
Posts: 1,412
I have very seriously contemplated going back to my original dentist for his opinion even though he's 3 hours away. I'd this one root canal doesn't fix the issue, I think I will call him up.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Oct 2008
Posts: 246
Likes: 1
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Joined: Oct 2008
Posts: 246
Likes: 1
I would strongly encourage you to seek out the most qualified dentist with experience in H&N cancer, even if it involves travel. My husband started having dental issues a few yrs post-tx., a few cavities, two root canals, leading up to one extraction in 2013.

We ended up traveling 3 hours to consult with an oral surgeon working on a H&N cancer team at a large NYC hospital. What a difference that made! The level of expertise in comparison to even our good and very concerned local oral surgeon was tremendous. Due to my insistence, my husband agreed to go for only an initial consult. He did not want another MD, more complicated appts., more tests, etc. Well....it only took about 10 minutes to realize that this was the place for us. Instead of thinking that traveling 3 hours one way was too difficulty, we were thankful that we had this option. They deal with dental complications related to cancer daily. A plan was made - by the way, not an aggressive plan. We could email the surgeon, phone his Nurse Practitioner, once they even put his resident on the phone to answer a question.

Two years later my husband did undergo a complicated debridement procedure. Again, the care and follow-up was excellent. It has resulted in a quiet year. We know there is no cure for ORN, but in the meantime he has had a year with no jaw pain and has been discharged.

I have started this message over several times getting bogged down in details which do not apply to you. Ask away if you have questions or PM me. The point I want to make is that it is worth the travel headache to get to the right dentist. It is very frustrating because there is no set protocol for these dental complications, but with a confident team that presented a plan, we knew we were doing everything possible and could stop second guessing ourselves.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
Joined: May 2009
Posts: 1,412
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Joined: May 2009
Posts: 1,412
Thank you all for your responses. I will finish this root canal therapy and then see what happen . If more issues arise I will definitely seek another dentist with more experience.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12

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