D
denturesat27
Junior member
- Joined
- Jun 18, 2014
- Messages
- 6
Ehlers Danlos Syndrome and full mouth extraction -- toothless at 27 years old
So, I posted this in the support forum but I think since I want to keep updating it, I'll post my story and my continuing recovery here.
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.
5/6 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.
Since then, the bleeding has stopped (thank God) and the swelling has almost doubled my face and it is very, very painful. This morning my eyes were puffy and it freaked me out. Also I've developed thrush -- just to make everything else just a little more uncomfortable for me, why not. Had my mother call the dentist, but guess what, they took the day off, so I get to sit here and worry for a whole weekend. I haven't eaten since the night before the surgery. I'm trying to keep my nutrition up by drinking Ensure, but with the swelling and the sutures I can't bite down on anything, so even having something thick like baby food in my mouth is intolerable. I successfully mixed baby food with water to make a sort of a slurry, and that's all I've been able to eat. Can't be getting more than 500 calories a day, though. I can't even move my lips and my tongue, the swelling is so bad. I'm not sure how they expect anyone to eat in this situation. Hope I don't starve to death before I heal.
So, I posted this in the support forum but I think since I want to keep updating it, I'll post my story and my continuing recovery here.
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.
5/6 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.
Since then, the bleeding has stopped (thank God) and the swelling has almost doubled my face and it is very, very painful. This morning my eyes were puffy and it freaked me out. Also I've developed thrush -- just to make everything else just a little more uncomfortable for me, why not. Had my mother call the dentist, but guess what, they took the day off, so I get to sit here and worry for a whole weekend. I haven't eaten since the night before the surgery. I'm trying to keep my nutrition up by drinking Ensure, but with the swelling and the sutures I can't bite down on anything, so even having something thick like baby food in my mouth is intolerable. I successfully mixed baby food with water to make a sort of a slurry, and that's all I've been able to eat. Can't be getting more than 500 calories a day, though. I can't even move my lips and my tongue, the swelling is so bad. I'm not sure how they expect anyone to eat in this situation. Hope I don't starve to death before I heal.