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My teeth have been deteriorating ever since the radiation (I know, big surprise). I'd already had the top front four replaced with crowns and posts, and it was time for the bottom four to go the same way. Except my dentist wasn't comfortable with her ability to manage it and suggested I see an oral surgeon for that. Well, he took a look at my mouth and the x-rays (once they finally sent them) and decided I needed all my teeth out. They talked back and forth on it, and that's the consensus they came to. NOT what I was mentally prepared for, as you can imagine. I know this can happen, but I thought I had more time.

Of course they are recommending the hyberbaric treatments, and after going back and forth with getting three different offices on board and then jumping through more hoops, we went ahead and started with those this week. Except ... my body is not tolerating them well. It's not just the ear pressure thing. Barometric pressure changes are a migraine trigger for me ... so there's headaches. I have a severe panic disorder ... which this whole situation is triggering. And the pressure seems to be setting off my new diagnosis of trigeminal neuralgia as well ... the pain is the same pain. Except, I was reading in someone else's thread, and those symptoms sound rather like the osteonecrosis symptoms as well. (My neurologists have been VERY poor ones, and not prone to taking into account my whole medical history.)

So now I'm having straight up panic attacks about the whole thing. I'm pretty sure the no-teeth, getting-dentures is unavoidable at this point because my teeth really are that bad. But if the hyperbaric process is causing me so many other physical complications (can't eat because of nerves, and we all know that calories help healing, for example, and no, I can't just make myself eat), I think I'm setting myself up for more danger after the surgery than if I just go have it now, while my body still has some reserves to fight with. Three more weeks, or more given the holidays, of panic attacks will make me very sick indeed. I've been through this kind of thing before. I won't have anything left to heal with.

It's been so long since I visited that I can't even recall what my signature line will say when this posts. But if anyone has had the full extractions and dentures done, and can talk me off this ledge, or give me advice, or ANYTHING ... it would be greatly appreciated. I feel like I'm walking into all these appointments knowing more than my doctors do ... and I don't know much, so that's scary. None of them are looking at me as a whole patient and trying to see what's best for Kristen, they're just going by a checklist of 'this works for most folks'. I am terrified.

Thank you for reading, and I appreciate any information or insight or comfort you have to offer.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Im so sorry to read of all your recent issues!!! Its absolutely horrible after what we all have been thru to have on-going problems years later. To me it sounds like if you were able to overcome the ear pressure problem the rest of your issues may fade and not be so bothersome. At least I hope that would be the case.

I have a question for you... Did you get tubes put in your ears prior to starting HBO? Ive done many, many HBO dives. Ive also attempted far too many dives where I couldnt handle the ear pressure and wasted too much time trying unsuccessfully to do the HBO treatment until I finally gave in and got the tubes. Its very common for patients to experience intense ear pressure when first starting HBO. Its just like anything else, your body needs to get used to it and adapt. But if you do not have tubes in your ears, that would explain why you are having so much trouble adjusting to the pressure. Some facilities make it mandatory every patient must get tubes in their ears prior to any HBO treatments. You should have a special HBO doctor check you weekly and a HBO tech check your vitals prior to and after every dive. The HBO doctor should have treated other OC patients, they should have knowledge about your special needs due to being an OC survivor. Your ENT should be able to put the tubes in your ears in an out-patient surgery. Some patients are even able to have the procedure done right in their ENTs office. After everything you have already been thru getting tubes in your ears should be a piece of cake. To me it was one of the easiest things Ive ever done.

If you are overly anxious about the HBO dives that can also be working against you. HBO should be a relaxing time where you can take a nap or watch TV or movies. Your treatment facility should have TVs available for their HBO patients. If you dont see them.... ask! The first time I did HBO, I watched almost the entire series of the Sopranos. If you have anxiety meds I suggest taking one before going to your HBO session. If you arent on them, see your family doc and get started on some meds. Its nothing to be embarrassed or ashamed of, its very common for OC patients/survivors to struggle with anxiety, depression, PTSD, etc. Think of anxiety meds as another tool to help you get thru the rough times. HBOs benefits far outweigh the negatives, at least they did for me. You are not alone with having trouble adapting to doing the HBO dives, Ive heard similar things from many other OC patients/survivors. But, with a little help they were all able to complete their treatments and I have faith you can too.

I hope I was able to help you to overcome some of the obstacles you have been facing. Dont be a stranger!!! Many of our members have been in similar situations and have other ideas to help you get past this temporary bump in the road. Its ok to ask questions, rant, vent, or to lean on us. We understand. OC stinks (to put it mildly), every single thing about it is horrible. We all get it and are here to help. Dont ever forget your very extended online "family" supports you and is always here to cheer you on. Good luck!!!!


PS... Oops!!! I almost forgot about your problems with eating. You know how important it is to get balanced nutrition! If you cant eat then you must drink. Heres something I post to help patients who are having problems eating---

Milkshakes and smoothies are easier going down than many things. Also try ensure or boost to try taking in the most balanced diet as possible. The following list should help you to find things you can eat easily like canned peaches (these will slide right down) or cream soups. I also enjoyed yoo-hoo and chocolate milk during rads and recovery, plus the extra calories sure didnt hurt. You may find that would help you too.


List of Easy to Eat Foods

Here is a recipe for something I used to make and drink when I went thru treatments and recovery in 2007. This shake has anywhere from 1500-2200 calories depending on how its made. The list of easy to eat foods may help you too, they mostly have a smoother texture and are easier to eat than most other foods.


(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder
(check with doc if this is ok)

Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to whatever consistency works best for you.


PPS... Centrum has an adult liquid multivitamin out. Ive been taking it daily for about 3 months and can honestly say its helped me tremendously. Maybe you could try them? I think taking a multivitamin would be a big help to you. You really need this, especially with your recent challenges you have had with eating. When you feel good and strong it helps you to better manage everything else as well.


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: Oct 2008
Posts: 246
Likes: 1
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Joined: Oct 2008
Posts: 246
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I want to reply to the dental issues and ORN worry by explaining my husband's experience dealing with this complex situation. I'm copying a previous post of mine. It will likely sound overwhelming to you right now, but it's imperative to get to the best MDs before any teeth are extracted!

I would strongly encourage you to seek out the most qualified oral surgeon 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 an extraction in 2013 with difficult healing.

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.They deal with dental complications related to cancer daily. We could email the surgeon, phone his Nurse Practitioner, once they even put his resident on the phone to answer a question. My husband underwent a complicated debridement and tissue transfer procedure one year ago with excellent healing. Again, the care and follow-up was excellent. He did have HBO with ear tubes inserted during ENT office visit.

The point I want to make is are you able to consult with an oral surgeon/ENT team experienced with H&N cancer dental complications? It is very frustrating because there is no set protocol for these 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: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
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Joined: Jun 2013
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Christine, thanks! No, I don't have tubes, and I think I'll be okay there ... my ears seem to be doing a bit better. The tooth/jaw pain is the same, which is what has me concerned, and I don't think that's related to the ears. It definitely kicks in during the pressure change times, though. I need to figure out which of my doctors to ask about that, and which ones are open this week (being a holiday week). The nurse/tech does check my vitals before and after, but my meds and anxiety make my blood pressure run low normally, so I expect I appear fine most of the time. Go figure. As for anxiety meds, I already take so many that it's not possible to prescribe me anything more without flat-out sedating me (which I wish they could do, but then I don't think they could do the dives?). I do have one strong migraine pain-killer with a somewhat sedating effect, which I do take each morning before I go (to prevent the pressure headaches as well as for the calming effect), but that only works so much.

The drinking idea is good. What I should have clarified is that the panic disorder causes extreme nausea, so eating/drinking is more a problem of making my body accept food and keep it down. And that scares me too, because I can't see vomiting as being good for my stitches later ... panic upon panic. I do like the vitamin idea, and I didn't know they had a liquid form. That's a great tip.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
travelottie, thanks for the information! I think this doctor is experienced ... he sounded like he was, at least at first. I just realize, as the process goes on, that there are more questions than they gave me information for. This seems to be true of every step of the cancer journey, and of any health complication life throws at us, really. It's getting overwhelming. I mentioned a difficulty with neurologists ... the first one I dealt with gave me her first-line prescription for nerve pain and then had the gall to tell me *I* was a difficult patient. I had complained of a side effect it was causing me, and she insisted that it couldn't possibly be giving me that side effect because none of her other patients had ever had that side effect. It happened to be the number one side effect listed on the patient literature, and I'd had the med before and knew what to look out for. Not a terribly reassuring experience. I've since changed that doctor for a different one who may or may not be any better. Then this all comes up. And you don't know that you don't know what questions to ask till things start to go wrong.

Travel isn't an option for me. I wish it was. Maybe it would make things better.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery

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