D
denturesat27
Junior member
- Joined
- Jun 18, 2014
- Messages
- 6
Hello everyone. I'm new here, I wanted to share my story. I do have a couple questions so if you don't want to read the whole thing, you can scroll to the bottom, it will be long, haha.
My issues with dentists began early. -Caine numbing products have never worked right on me, so when my teeth began going to shit in my early teens, I had multiple issues with unkind dentists who wouldn't listen to me and would actually yell at me for squirming during fillings. To make matters worse, I have a very sensitive throat/gag reflex (I cannot swallow pills and even thick foods like breads sometimes feels as though it gets stuck) and due to the psychological trauma of the adults around me treating me as though I were making it up or doing it for attention or straight-up lying, I developed a severe phobia of vomiting.
When I was 19, I happened to look in the mirror and found that a piece of my enamel had chipped off and the tooth was black underneath. I freaked out, went to a dentist (I had no insurance at the time) -- I *believe* the man said hypoplasia but I can't be sure. As soon as he said "you're going to lose all your teeth, there's nothing we can do, and it'll be $3000 to pull each tooth" I pretty much shut down in a mind-numbing panic.
Over the next eight years I did lose my teeth. The enamel would crack and splinter and fall off, even while eating soft foods or nothing. 2010 I had 7 teeth removed, plus four impacted wisdom teeth to total 11. The rest of my teeth continued to do the same -- the enamel would fracture and break off, revealing a black tooth.
A week ago I was diagnosed with Ehlers-Danlos Syndrome (ednf.org) a genetic disease that means the body produces incorrect collagen. It affects every single part of me. My geneticist thinks it's the rare periodontal type, but I don't quite fit the literature and she's just never seen anyone with it so we can't be sure if it isn't caused by something that happened in my past (like a severe vitamin deficiency) or something else undiagnosed. If it isn't periodontal type, she says I display symptoms of Classic.
Yesterday I finally was able to get my full mouth extraction, 21 teeth. I am toothless at 27 years old. The oral surgeon put me out (it took 8 months to find someone who would take my insurance and do sedation and my amazing mother paid $1000 out of pocket anyway) and performed an alveoplasty on top of everything else, so I have non-absorbable sutures in my gums I'll have to deal with for 3 weeks until the surgeon comes back to my town to remove them. Whoopee.
So here's a couple of questions:
Anyone have Periodontal EDS? Or know of someone who does? I want to link up with others and see how they lost their teeth. Perhaps in this case personal experience could be helpful.
EDS causes poor wound healing and, sure enough, a couple of my sockets in the back are still giving me mouthfuls of dark red blood. Gauze is the only thing that stops it. I will bite down on moistened gauze for an hour at a time and as soon as it is removed, the bleeding begins again. The surgery was completed at 9am yesterday so I'm coming up on 16 hours post-op. I tried tea bags, but for some reason it caught on the sutures and was very painful. I will try a tea bag wrapped in gauze next. I'm getting desperate to stop this bleeding. Has anyone else had bleeding this long? I warned the oral surgeon about this (he claimed he'd heard of EDS) but apparently the alveoplasty (which was $500 out of pocket for my mom) is something he does. I don't know if I should have argued with him or if it will be better when it's all healed and be for the good in the long run.
One of the major reasons I'm concerned about the blood is that's all I taste. I burp it up. I can't eat or drink. I feel like I'm swallowing buckets of it (and I'm not sure that's entirely inaccurate because it's literally just a mouthful of dark red, there doesn't appear to be much saliva at all) and with my phobia I will do everything in my power to prevent from vomiting. So I've been letting the blood/saliva drool gently out of my mouth rather than swallowing it. I know they say don't spit, but I'm not spitting. Just drooling. Is that still causing the blood clot to loosen and more bleeding to occur or maybe just because the problem spot is in the very back I'm not getting the gauze on it totally? Considering my options are drooling blood or vomiting, I feel like I'm doing the right thing.
I will call my dentist tomorrow with all these questions. But it's 1:30 and I woke up with a mouthful of blood and I wanted some personal experience/opinions. Thank you
My issues with dentists began early. -Caine numbing products have never worked right on me, so when my teeth began going to shit in my early teens, I had multiple issues with unkind dentists who wouldn't listen to me and would actually yell at me for squirming during fillings. To make matters worse, I have a very sensitive throat/gag reflex (I cannot swallow pills and even thick foods like breads sometimes feels as though it gets stuck) and due to the psychological trauma of the adults around me treating me as though I were making it up or doing it for attention or straight-up lying, I developed a severe phobia of vomiting.
When I was 19, I happened to look in the mirror and found that a piece of my enamel had chipped off and the tooth was black underneath. I freaked out, went to a dentist (I had no insurance at the time) -- I *believe* the man said hypoplasia but I can't be sure. As soon as he said "you're going to lose all your teeth, there's nothing we can do, and it'll be $3000 to pull each tooth" I pretty much shut down in a mind-numbing panic.
Over the next eight years I did lose my teeth. The enamel would crack and splinter and fall off, even while eating soft foods or nothing. 2010 I had 7 teeth removed, plus four impacted wisdom teeth to total 11. The rest of my teeth continued to do the same -- the enamel would fracture and break off, revealing a black tooth.
A week ago I was diagnosed with Ehlers-Danlos Syndrome (ednf.org) a genetic disease that means the body produces incorrect collagen. It affects every single part of me. My geneticist thinks it's the rare periodontal type, but I don't quite fit the literature and she's just never seen anyone with it so we can't be sure if it isn't caused by something that happened in my past (like a severe vitamin deficiency) or something else undiagnosed. If it isn't periodontal type, she says I display symptoms of Classic.
Yesterday I finally was able to get my full mouth extraction, 21 teeth. I am toothless at 27 years old. The oral surgeon put me out (it took 8 months to find someone who would take my insurance and do sedation and my amazing mother paid $1000 out of pocket anyway) and performed an alveoplasty on top of everything else, so I have non-absorbable sutures in my gums I'll have to deal with for 3 weeks until the surgeon comes back to my town to remove them. Whoopee.
So here's a couple of questions:
Anyone have Periodontal EDS? Or know of someone who does? I want to link up with others and see how they lost their teeth. Perhaps in this case personal experience could be helpful.
EDS causes poor wound healing and, sure enough, a couple of my sockets in the back are still giving me mouthfuls of dark red blood. Gauze is the only thing that stops it. I will bite down on moistened gauze for an hour at a time and as soon as it is removed, the bleeding begins again. The surgery was completed at 9am yesterday so I'm coming up on 16 hours post-op. I tried tea bags, but for some reason it caught on the sutures and was very painful. I will try a tea bag wrapped in gauze next. I'm getting desperate to stop this bleeding. Has anyone else had bleeding this long? I warned the oral surgeon about this (he claimed he'd heard of EDS) but apparently the alveoplasty (which was $500 out of pocket for my mom) is something he does. I don't know if I should have argued with him or if it will be better when it's all healed and be for the good in the long run.
One of the major reasons I'm concerned about the blood is that's all I taste. I burp it up. I can't eat or drink. I feel like I'm swallowing buckets of it (and I'm not sure that's entirely inaccurate because it's literally just a mouthful of dark red, there doesn't appear to be much saliva at all) and with my phobia I will do everything in my power to prevent from vomiting. So I've been letting the blood/saliva drool gently out of my mouth rather than swallowing it. I know they say don't spit, but I'm not spitting. Just drooling. Is that still causing the blood clot to loosen and more bleeding to occur or maybe just because the problem spot is in the very back I'm not getting the gauze on it totally? Considering my options are drooling blood or vomiting, I feel like I'm doing the right thing.
I will call my dentist tomorrow with all these questions. But it's 1:30 and I woke up with a mouthful of blood and I wanted some personal experience/opinions. Thank you