First time post (long sorry)

[Phantom]

I apologise in advance for the length of this... it's my first post, I have a tendency to ramble. I wasn't sure whether to post in the support or questions forum, so I kinda split it up.. there are some issues I'd like to get feedback from the dentists on, but I chose here for my back story. I guess many people will just want to avoid the detail - it's not always nice. I'm sorry in advance if I trigger anyone else off with my tale.

I must admit I feel like a fraud compared with most people here. I have low level anxiety and compared to most people here, I'm dramatically lucky in that respect - my housemate is so phobic that he only recently plucked up the courage to go to the dentist after best part of a decade. He now needs fillings/extractions done but is having it done under GA as he can't even bring himself to walk into the clinic for my appointments. Problem is, it appears that the hospital he was originally referred to appears to not do restorative work under GA, which isn't good because the surgeon he saw basically just wants to pull everything - and he's utterly miserable about that, so we're working (with the dentist) to get him referred elsewhere if they refuse to do any restorative work (i.e. fillings etc).

I guess my fear is a combination of a dentist who refused to anaesthetise children because "a child's teeth don't have any nerves" when I was maybe 5 or so (this was barely in the 80s but hardly any excuse), the dentist I have not-so-affectionately termed "the butcher" after he mangled three of my teeth and rather than fill them separately, just drilled a "trench" (unnecessarily) between them (premolar and two molars on the bottom right) and basically just plastered amalgam in one solid block, leaving me with three buggered teeth and several years of pain. In addition, I have a lot of the issues mentioned in the article about survivors and dentists - control issues, being lectured, not being able to stop things, gagging, afraid to voice concerns or discomfort, etc.

I'd never been the most regular of dentist visitors.... but generally I went once a year at least, definitely at the first sign of trouble. Apart from a few fillings, I kind of just.... gritted my teeth, pardon the pun, and dealt with the anxiety. My discomfort around dentists might have meant me being uncomfortable (and shaking/adrenaline rush) in the chair, feeling faint and/or nauseated on standing, and crying my eyes out and shaky again after leaving the office but... I guess I'm a baby with dental pain, and I have a.... fairly big fear about visibly damaged/missing teeth, or having to have dentures, so I tried to keep them fairly healthy. Apart from this, I'd only needed a few fillings in a few molars, my wisdom teeth removed under GA because all four were impacted, partially erupted and the bottom one were damaging the 2nd molars (hence the fillings on those) and that was about it. Eventually I needed a root canal done on the 2nd molar on the bottom left after the damage from the wisdom tooth and a subsequent abscess but that was it really.

My problems started only the last few years. I suffer from a medical condition called endometriosis (and a few other related issues) that currently have me on long term incapacity benefit. As a result, over the last few years (say 5 years) I have been treated with three courses of drugs called GnRH analogs - these basically force your body into a chemically induced menopause - for 6 months at a time. Not a whole lot of fun, especially as it didn't really work at the end of the day. While it's well known that these drugs can deplete your bone density, no-one ever mentioned dental issues (either peridontal/bone or with the actual teeth themselves). The frustrating thing is that there is little mentioned about this, anywhere, although it appears that there are a whole host of people who have reported dental issues much like mine after taking these drugs.

The initial collapse of the tooth that was eventually root canalled occurred within months of the first course of this medication - about a third just literally broke away - no prior decay that I could feel or see, no holes, no pain, no sensitivity, no warning - nada. Only a small filling on the surface between 2nd and 3rd molar and broke on the opposite side (i.e. the 1st molar side) from said filling - abscess, followed by root canal. A few weeks later, 2nd molar, top right, back half completely disintegrated - not even while eating this time. Just felt funny as I closed my mouth, poked with my tongue, tooth fragment fell out in one chunk - again, no warning, no gradual decay, no holes or sharp edges, nothing. That one had fractured below the gum line, had to be extracted. Thankfully, that seemed to be it, and I was back to my pretty healthy teeth, though somewhat distressed by my horrible bad luck. The dentist figured that bruxism was the problem - I knew I did clench and grind my teeth in my sleep, after all - so I had a mouth guard made.

Things seemed fairly OK over the next year or so. Then, I was given the second and third courses of medication, within a couple of months of each other. That's when things really went bad. With about 6 months of finishing up with them, I was back in the dentist to have the bottom right second molar pulled after losing another 1/3 to 1/2 in 2 chunks at once (either side of the filling at one time, however), again below the gumline, again, no warning. On extraction, the tooth kind of disintegrated and came out it many bits. I was thoroughly lectured on how it must have been a longterm decay issue (as I had been for the previous miraculous collapsing teeth), even though I'd been into the dentist less than 6 months previously. Within a couple more months, the 2nd molar on the bottom right did the same thing - in only a few weeks, I had lost all of the surrounding remaining tooth, and was left with a nice, sturdy, root canal as the only remnant left above the gumline.

I'd moved at this point, from the south of England (and the ability to pay for private dental treatment) to the north west (and living on incapacity benefit with no NHS dentist available). It took me 28 months to finally find an NHS dentist who was taking new patients this last December, and actually get onto the list before they were completely filled within hours. By this point, I'd lost a whole heck of a lot more teeth in the process. If I have the numbering right, it was as follows:
15 - unrestorable, half missing.
18, 20, 29, 30 - root remnants.
19 - currently needs root canal.
8 - sliver missing between it and 9 that just broke off during flossing
27 - tip chipped off while eating
Plus about 15 others needing fillings for very minor "white spot" type damage - I had about 5 healthy teeth. And I can't believe I just admitted that to a whole bunch of people. :'(

I'd never been so mortified in my life. My dentist initially made me feel utterly wretched and humilated by telling me he'd never seen a mouth that bad - turns out he meant "get that bad in so little time" but even so... everyone's greatest fear, I guess. Certainly was one of mine. I was so utterly destroyed I didn't even want to leave my bedroom for a week, and I still can't smile or talk to someone without covering my mouth. Thing is, apart from the chip visible at the front, my teeth didn't look that bad - they weren't exactly sparkly white, but most of the work needed wasn't obvious to the casual observer.

Initially I didn't think there was any way I could face going back to him - thankfully, the return visits, he has been friendly and supportive, without any prompting. I'm sure he didn't intend to have the effect he did - and it wasn't given as a lecture (in fact, he suggested some of my medicines might be to blame which was, honestly, the first time I made the link). But a careless off the cuff remark like that can be so very hurtful. Since then, he's been pretty good though - he's worked on me every 7-10 days, gradually going through the work that needs doing, and he's always been considerate, stop signs, plenty of opportunity to pause, sit up, rinse etc - even without prompting. I guess he spots my anxiety almost even before I do. And he's never commented like that, since. Even today, for the final extractions despite problems getting numb (I've had issues on the bottom right with that before, branching nerves or weird extra innervation I guess, got pretty much all of it in the end after about 9 shots) and recalcitrant teeth refusing to come out in whole parts - a visit which is still making me tearful and anxious even though he was very careful to make sure I was numb before he did anything. It's mostly done now though, thank goodness. A root canal to do (oh yey - thankfully the left side which anaesthetises well), the front tooth (not entirely sure if it will be just filled or need capping etc), and possibly a few more surface fillings on the front top. But about everything else is done now, I think.

I've lost a total of 11 teeth now, I think, and basically have just the one bottom molar. How very depressing. I honestly don't know if I can face dentures. Just today, it seems all my fears crystallised and I'm still shaken now even though my dentist was actually wonderful (the nurse was pretty annoying though - on my saying through clenched teeth and gags that it was making me retch, her only reaction was to say "just keep biting on it" - not very helpful to say the least) and actually twice took the sucker off the dippy nurse to make sure the various fluids didn't make me choke/gag.

I'm just glad he turned out to be more supportive and caring than that careless comment suggested... because I really didn't have an option. It was stick with him, or return to the fruitless search for another 2 years for yet another NHS dentist actually taking patients who isn't completely full with multi year long waiting lists. By that time, I would have pretty much lost most of my teeth, I think, with the rate they've been disintegrating - despite brushing, flossing, gargling/rinsing with various stuff trying to keep my teeth healthy.

I just have this sense of fury - apart from the hormonal stuff, the situation was worsened by a medicine I use to control nausea and vomiting which is dissolved between the lip and gum. Of course, they make it out of.... sugar. Yey. Add into that various pain medications and the like which cause the most horrifically dry mouth... yeah. So that's how I managed to destroy my mouth in two years, pretty much. And I don't know who I am angrier at. The drug makers for not listing teeth problems in their leaflets or websites.... me for being too stupid to think about that (I actually trained up as a medical microbiologist.... so I should know better)... the doctors/dentists in the past who never once warned me of the risks to my teeth.... and I've settled on blaming myself. The fact that my oral care is exactly the same as it was before is irrelevant in my warped view, I should have known to take more care of my teeth. I should have realised the risk. And by the time I did, it appears to be too late. Now I think I am condemned to losing gradually more teeth month by month... and I simply can't face false ones. I'm 30 years old, for crying out loud.

Anyway, I should stop whining. I'm just stuck on this kinda anxiety-pity-party loop thing, I can't talk to my housemate (also my best friend) because I'll just send him into a full blown panic attack needing valium, and I'm feeling kind of miserable right about now (especially after 3 difficult extractions and a very pissed off nerve in the right side referring pains to all parts of my upper and lower jaws and teeth). If you managed to work through this... thank you. I know it was a monster of a post.

[brit]

Hi Phantom


What a wonderful post...so well-thought out and beautifully structured.
You've found us a long way into your journey and I am so pleased that you eventually managed to find a supportive NHS dentist, especially as it was a bit of a Hobson's choice.
Has he advised you about how to go about keeping what you've got? I suppose someone really has to take an overall view as to which medications can be left out for the sake of your teeth and which really cannot. I see you've asked in the Dentistry section so the less I speculate the better I expect.

I'm guessing you are feeling a bit down because it has all come to a head and you've recently had a toughish appointment.
You've been unlucky really with the combination of factors coming together and as ever we can't really turn the clock back. At least you've moved mountains to get yourself where you are now.

There's also the fact that all women get a worse deal dentally because of issues with changing hormone levels. In fact I was thinking the other night what a poor design teeth are - we can damage our gums by cleaning too much as well as by brushing too little and why can't they just be more durable like an arm or a leg - say made of steel and in ball and socket joints so they are virtually indestructible...I mean why...what a design weakness.

Is the concern about false teeth because you now need to have them after all this work? But I rather got the impression you still had quite a few teeth and were maybe looking at partials or just managing as you are??? The only point which I wasn't clear about really.

Stay in touch - this is a friendly place in cyberspace....I hope you get some useful answers - Gordon works with medically compromised patients so he should have some experience on various drugs and the damage they can do to the dentition.

[Phantom]

Thank you for the wonderful welcome. I'm not always the most prolific poster (though sometimes I'm very much the opposite, and you can't shut me up hehe) but your kind response means a lot to me.

The hormonal medication I think did most of the damage is definitely OFF the scene now. Technically you're only ever supposed to have 6 months worth in your lifetime because of the bone thinning effects but... well it routinely gets given multiple times and when you have a doctor refusing to perform surgery you need to (hopefully) ease constant severe pain, but refusing to do it unless you take those meds... well doesn't leave you much choice. Especially not when you're already weakened from the constant pain, exhaustion, and fighting doctors all the damn time. Thankfully now I have a decent dr who (quite correctly) really doesn't like the stuff, and happily will accept a patient saying no to it. It took a while but it's one of the bonuses of moving - found one of the handful of drs that actually specialises in the surgery I needed.

As for the antisickness meds... well I need something. I'm currently taking rather large amounts of strong painkillers (morphine and a related drug called fentanyl) because of the constant severe pain and I get horribly sick from both the illness and the painkillers. It's really not all that great for dental pain though, anti-inflammatories like ibuprofen or naproxen win out every time there. The problem is that when I need the antisickness medicines, there's no way that I can keep down the swallowed pills long enough to have them work. So it's a bit of a swings and roundabouts.

One of the other medications is actually an antidepressant although it's used to manage nerve pain (one of it's other benefits) and help with sleep (a rather useful side effect) but it does make me very dry in the mouth.

Those are the main culprits - and they're all.... things that make my life a little more bearable than unbearable (I currently can't sit for more than a few minutes, let alone stand, walk etc, without causing severe pain - thankfully my housemate has taken over cooking, cleaning and generally helping me out when I'm having bad days). My dentist has, however, started me on Corsadyl and an extra fluoride mouthwash, which he hopes will help to reduce the decay risk as much as possible... but I'm not sure if I will be able to repair the damage that has already been done to my enamal. We've also talked about saliva replacement products as well, so I may have to start trying those to see if that helps, as well as changing to a different toothbrush (spanking new electric one, nicer than my old one hehe) and that does seem to be helping a little bit.

The dentures thing... it's a general fear I guess. Maybe it's a vanity issue, or stigma, or the association I've always had with dentures (my father used to have a partial plate, and it used to totally freak me out to see him without it, or the plate out on it's own, it just seemed really weird)... and stupid, I know, but my emotions tell me "you're 30 years old, you're too young to have lost 1/3 of your teeth". Plus there's the fact that premolars are kind of visible unless you're careful, and also the issue that I have lost most of my chewing teeth on the bottom.... and the fear that while I still have two thirds of my teeth now, I worry that I'll continue to keep on having teeth breaking up at chunks like they have been, then I'm going to end up toothless before long, and hence... there's the denture issue..... And losing a part of myself..... it's hard to explain. plus, knowing how much stuff at the back of my mouth makes me gag (I have real texture/food issues as well, just part of my funky wiring!) I don't know how I would cope with anything like that, partial or complete...

Anyway... thank you, once again, for your wonderful welcome and kind words. I really appreciate it a lot.

[takingflight]

Hi Phantom and to our group!

I have to echo much of what Brit said. Your post pulled me in immediately, it was interesting and well written. I’m just sorry that you have had a rough time with things recently. In the past I never would have given medications a thought but once I started researching causes of decay at the beginning of my journey I read many stories similar to yours. It’s frustrating when something like that happens as it is out of our control. But….keeping that in mind is important also. Don’t allow this to overtake you, use it as a learning experience so you can work towards keeping your remaining teeth healthy. Now that you know the medications may make you more at risk you can be more proactive in your oral care.

As Brit mentioned, it does appear that you will only need some partials rather than full dentures. Age is only a number when it comes to these things. In my initial phases of preparing to make a dentist appointment I was convinced I was going to lose many of my teeth and found a forum similar to this that was denture related. There were many people there in their 20’s and early 30’s with full dentures or upper dentures. The reasons were varied from accidents, poor health care, lack of enamel and so on. No one was judging them and most shared that they loved their new smiles and no one could tell the difference. Even though I didn’t have to go that route their stories made me realize that whatever happened, the most important thing was that I would be able to smile, eat and not have any pain.

Trust me, it’s o.k. to feel the way you do but allow yourself the time to put things into perspective. You’ve found the answer to your sudden dental issues and hopefully can work with the dentist to ward off or minimize future problems. In addition, with today’s technology there are better ways to restore the teeth you have and make beautiful replacements for those that are missing. You are a person and your teeth are only a fraction of what makes you the individual you are.

Thank you for sharing your story with us and I really hope you’ll stay around and let us know how you are doing. Sending you best wishes for your upcoming work!! You can do it!!


Pam

[takingflight]

Ooops, it appears that I was writing my post about the same time as you were so I missed the second part.

It sounds as though your dentist is on the right track in trying to help you. Little things can add up to make a difference so you may find that things slow down or improve. I’m sure it’s frustrating for you and I’m sorry that you have this to deal with in addition to the pain you are suffering from. I have such a low pain threshold that I don’t know how I would handle things. Certainly not as well as you seem to be!

I really hope that everything works out for you! We are here for you to offer support or just a listening ear!!


Pam

[Phantom]

Thank you, also, Pam. I appreciate your kind words - especially about my post (both of you hehe) usually I feel kind of awkward about the length of my posts, so that was definitely nice to have that encouragement... it all helps when your self-esteem is an issue, doesn't it?

Your words about dentures (full or partial) of course make perfect sense. And my logical side knows that it's not a reflection of me, any more than having to wear glasses; I'm rather like the proverbial bat without them hehe but that's another nice touch at my dentist's office - not only do they provide safety glasses that go over normal glasses, but they're tinted so that you're not getting totally blinded with streaming watery eyes by the light. One more of those nice little touches that makes all the difference, if - like me - you need to keep your eyes open to see what they're doing!

Anyhow, I know that I shouldn't fear it so much... and after all, you can't get toothache in a false tooth, right? I have to admit, I'd rather get implanted ones - they at least stay in place... but the cost is simply prohibitive sadly. I'm kind of hoping that I can get a bridge for the missing premolar on the left side, at least, as it has fairly healthy teeth either side, but I will have to discuss that further with my dentist. I must admit, if I went for implants then I probably wouldn't replace them all... probably just the premolars and the first molar on the right.... so three, in total, to match up with the remaining upper molars... ok, so I'd still be missing the second molars, but that I can live with. But having seen the cost of just a single implant... I'm not sure. Perhaps a bridge on the left, and if I can raise the cash, implants on the right.... That will, I imagine, depend on the condition of the underlying jawbone though, and how much bone loss I have from the anti-hormonal medications. But it's something I can think about, anyway. I guess, I just don't want something that I take out every night, but something more permanent.

Anyway, thank you again your posts meant a lot to me. As for coping with the pain.... well it's one of those things you kind of get used to, to a certain extent. I'd give a whole lot to wake up and be painfree, for certain, but when you deal with something for a long time, especially when it starts gradually, you adjust and it's easier to tolerate. Trust me, if this pain had all hit me straight away - from no pain to my current pain levels, I'd be screaming to be knocked unconscious and to stay that way forever! But it's pain that's built up from a few days here and there to it's current level over the best part of 20 years. That's the real difference. Just like all of us who fear dentists will put up with amazing amounts of dental problems, with sometimes godawful pain, rather than get it fixed (let alone resolve it before it gets to that stage). I have to admit though, I think I deserve shares in Oragel now.

[ReallyScared]

Hi Phantom, don't worry about the long posts, you've given a really good background to your problems, so hopefully the members on here will be able to help.

Regarding your drugs, were you not given any calcium supplements to help protect your teeth and bones while you were on the analogues? Even now, they might help to strengthen the teeth you have left... might be worth looking into.

Also, with the anti-emetic, I remember taking care of a lady who had problems keeping the pill between her lip and her gum - the pharmacy told her she could let it dissolve under her tongue instead, that she would get the same effect from taking it that way. I don't know if that might help you?

I don't really have any advice to give you regarding dentures, but I'm more than likely going to be getting them myself. From what I've read, dentures nowadays are very good, and they can be anchored into place with little implants. Might be a cheaper option than having individual implants for each tooth if you do end up going down that route. I'm glad to hear you have a supportive dentist that you can talk to about this sort of thing.

I hope all goes well for you,

Best of luck xxx

[brit]

From what I've read, dentures nowadays are very good, and they can be anchored into place with little implants.
Best of luck xxx

Yes, I meant to mention this as well, a couple of implants which the denture secures onto - would be a good idea given that you could easily live to be 100 thesedays!

[scaredstiff]

Yes, I meant to mention this as well, a couple of implants which the denture secures onto - would be a good idea given that you could easily live to be 100 thesedays!

Hey Brit had to butt in here. I'm nearly up to that 100 (well that's how I feel today) and I'm planning on making it to 150 at least!!!

[Phantom]

Regarding your drugs, were you not given any calcium supplements to help protect your teeth and bones while you were on the analogues? Even now, they might help to strengthen the teeth you have left... might be worth looking into.

Sadly no.... my doctor at the time didn't even inform me of any risks and (to be honest) was one of the most arrogant, ignorant people I have ever met. The only reason I knew the potential risks or side effects was because I researched the medications myself. He certainly never prescribed anything protective whatsoever. While I did take OTC calcium and vitamin D supplements, these alone are almost never enough with these drugs to prevent all and/or permanent bone loss (or, I imagine, to protect your teeth).

I was prescribed an HRT drug called tibolone (Livial) with the final course. Not only did they insist I take a drug to make me menopausal before surgery, they also insisted I had to have the replacement hormones as well (which kinda defeats the object, if you ask me, but never mind). Talk about taking away the ability for the patient to choose; no HRT, no GnRH analog, no surgery which I needed to get any relief from my symptoms. I was only on it for few weeks because I reacted horribly to it. I literally swelled up like a water-retaining balloon; I couldn't even put my socks on, let alone my shoes, and even my eyes swelled so that my glasses were the wrong prescription temporarily! But the Livial was prescribed by a different doctor on the team, and when my "specialist" discovered that I'd not reacted well he simply took me off with no replacement or anything else to protect or repair my bones (which sucks as osteoporosis runs in my family as it is). He just didn't accept it (or any of the other potentially nasty side effects) as a valid concern.

I've been trying for 6 years or so to even get a bone scan done, to see precisely how much bone loss I have because it often leaves permanent bone loss after stopping it, even with the use of supplements and even drugs such as Fosomax to try and strengthen them.

As for now - I'm not sure how much it would help but I'm not averse to trying again - I already take a multivitamin and mineral anyway, but certainly can probably boost my calcium intake and make sure my vitamin D is up too. One of the products my dentist gave me straight away was a fluoride rinse to use, so we're trying to see if that will help.... but considering that last visit he could have "cleaned up" the teeth he filled without a drill, I'm guessing that it hasn't really helped strengthening up my teeth just yet. It's a very good suggestion though, so I will ask, and also possibly see if he can push my doctors to take me more seriously on the subject of a DEXA scan and/or treatment if necessary.

Also, with the anti-emetic, I remember taking care of a lady who had problems keeping the pill between her lip and her gum - the pharmacy told her she could let it dissolve under her tongue instead, that she would get the same effect from taking it that way. I don't know if that might help you?

Hmm I suppose I could try that... I imagine it would still possibly increase the chance of decay on the inside surfaces of my lower teeth but with the increased saliva flow there, hopefully not as much. I can certainly discuss that, and again - thank you for a wonderful idea.

Implant supported dentures... now that's another idea as well, and I hadn't considered that option might be cheaper but it is again something I can ask about with my dentist - find out what he is able to do himself, what he'd want to refer me for, etc. And get some ideas of costs. So thanks also to everyone who has given me some (slightly less scary) options to removable dentures/partials. They might still be out of reach, but it's all options that I can at least work through.

I am truly grateful for all of the posts on here - the wonderful welcomes, and the ideas that have come up already. All the small changes can add up and make a huge difference, you know? Thank you, again. This community is awesome, such friendly people.