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Ehlers Danlos Syndrome and full mouth extraction at 27 years old



Junior member
Jun 18, 2014
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 :)
First, welcome to the forum!

I'm so very sorry all of this happened to you and that it took so long to get a correct diagnosis. I have a good friend with EDS (not the periodontal kind) and I know how it can impact so many aspects of your life. I know you said that local anesthetic doesn't work for you - did you know that this is extremely common in people with EDS?

I'm sorry I don't have answers to any of your questions, but just wanted to respond to your post to welcome you. You may try doing a search of the forum posts to see if anyone else has posted about EDS.
Yes, I did just become aware that numbing drugs don't work right on EDSers :) It was a very painful peculiarity that led to many arguments with dentists when I told them.

Thank you for the welcome.
Very sorry to hear your story, but more so the fact that your sockets are still bleeding after 16 hours. Can I ask what medication you are taking for pain relief? If you are taking anything aspirin based, stop immediately. Also, if you are taking ibuprofen for the pain that can also stop you from clotting (I found that out the hard way when I had my first wisdom tooth surgically extracted a few years ago and woudn't stop bleeding for 4 days). See a doctor for some alternative pain meds.

Also you have to try to get some kind of food into you... your body has been thru a lot of trauma and your body will need nutrients to help thru the healing process. I wish you the best... sounds like you've been thru the worst of it now, just need to get the healing process underway. Good luck!
I've just sent you a message.
Sounds like type VIII which is associated with severe periodontal disease. It would be helpful to know if that is true as I think you would also have issues with implants.
Assuming it is type 8 then I would consider extensive bone grafting with non-resorbable grafting material as this would maintain a ridge to hold a denture a long.
It might be possible to partially rebuild ridges using a stem cell technique that I use but I would have to see if there is any information on that for your disorder.
Thank you very much for your responses, everyone.

Spanky: I am taking just what the oral surgeon prescribed me: ibuprofen and percocet. The ibuprofen is every 6 hours so I think it was just prescribed for the swelling (which is significant this morning). I'm trying very hard to eat...I'm drinking Ensure and watering down baby food right now to try and get something in my system, but it's very hard with the sutures and swelling. I'm trying, though :)

Comfortdentist: I was never diagnosed with anything, but after doing some research I think it was the soft enamel from EDS causing periodontitis (the way my teeth looked and the way they fell apart looks like severe decay rather than hypoplasia) and advanced with a poor diet and poor brushing habits. I was never able to keep up the two times a day thing and being poor, ramen played a big part in mealtime since I was a child. The weird part is my gums were fine except for the front two teeth, and that developed in the last year. That one spot, they were beginning to recede. But I never had any gum disease. The other weird thing is there appears to be no bone loss, however my teeth always seemed pretty loose to me. Like, you could wiggle them a bit, but I never showed anyone so I'm not sure if it was just my imagination. Because I was very low-income my adult life and we bounced around a lot due to my husband's issues (he is a combat veteran with bipolar and PTSD), I was unable to establish regular care with a dentist who could see the progression and was able to actually make a diagnosis. Some of those free clinics, you come in with rotting teeth and they pigeonhole you as a meth-head and that's it. I got a lot of that. Implants aren't an option because of cost at the moment (I am still very, very low-income and state insurance only covers basic dentures), so if I do get bone loss from here on out, at least maybe I can document it and know whether or not implants would be an option for if we could afford it in the future, but I will definitely be careful in my consideration of them because of my particular issues. That was a weird long run-on sentence lol I hope I got my point across. I took my percocet not too long ago and I'm a little woozy.

Just as an update: The bleeding is less this morning finally...I think sleeping helped it to kinda coagulate the way it's supposed to. Just kinda brownish and more saliva than blood. So, keeping my fingers crossed that all 21 of the blood clots formed properly lol
Are you sleeping with your head elevated? This should help with the bleeding. I'm glad it's lessened some!
I don't know where you are from but I see implants(dental work in general) are very expensive in some countries I think its a lot cheaper to fly to some country where its cheap. For example where I live its very cheap(relatively) when compared to US prices. I don't have clear picture on this but its worth exploring this option later on.
I am sleeping elevated at the moment, it does help.

I haven't looked into the cost of implants because I don't want a heart attack lol, so I can't be sure. U.S. gouges its citizens terribly with any medical (or, anything, really, greedy f**ks) procedures. I'll keep that in mind for if we can afford it later, though.