20 y.o. hemophiliac who has never been to a dentist would like some advice **PICTURES**

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rubyku997

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Joined
May 18, 2018
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1
20 y.o. hemophiliac who has never been to a dentist would like some advice **PICTURES**

Hello,

I may as well start this off with saying how scared and ashamed I honestly am for not trying to get to a dentist sooner. I am 20 years old and I am a hemophiliac with vons willebrand disease. For those who aren't aware of what vons willebrand disease is, it is a genetic blood disorder marked by prolonged, excessive, or abnormal bleeding caused by deficient factor in the blood (which helps blood clot during a bleed). These abnormal bleeds commonly occur in excessive nosebleeds, bleeding from the gums, etc. Besides my fear of my vons willebrand disease causing me to bleed out during a dental procedure, I was raised by my grandparents who also had this fear, and refused to let me go under any extensive surgeries or procedures, therefore never took me to a dentist.

Anyways,
Right now, Over the last year I have been showing more and more signs of having severe decay where the gaps lie of my front top teeth. I have about 4 extensive cavities right now (or at least what I would say is extensive?), that I can physically see, and even so, I don't have any pain in my day-to-day life. I am really terrified to go to the dentist because I am not sure if they'll want to extract my teeth or what they'll do with how bad it has become. I guess, what I would really appreciate is some support, and maybe scenarios of what they may do.


I will attempt to post some photos on this thread of what my decay currently looks like, for people who would like a better idea of what I am trying to say. I apologize in advance for people who are easily perturbed by these kinds of things, and for the poor camera quality of my cellphone.

Thanks to all who attempt to give me any advice on this. I really appreciate it.






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A

Animalhouse

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Joined
Jun 4, 2017
Messages
127
Re: 20 y.o. hemophiliac who has never been to a dentist would like some advice **PICTURES**

Hello,

I may as well start this off with saying how scared and ashamed I honestly am for not trying to get to a dentist sooner. I am 20 years old and I am a hemophiliac with vons willebrand disease. For those who aren't aware of what vons willebrand disease is, it is a genetic blood disorder marked by prolonged, excessive, or abnormal bleeding caused by deficient factor in the blood (which helps blood clot during a bleed). These abnormal bleeds commonly occur in excessive nosebleeds, bleeding from the gums, etc. Besides my fear of my vons willebrand disease causing me to bleed out during a dental procedure, I was raised by my grandparents who also had this fear, and refused to let me go under any extensive surgeries or procedures, therefore never took me to a dentist.

Anyways,
Right now, Over the last year I have been showing more and more signs of having severe decay where the gaps lie of my front top teeth. I have about 4 extensive cavities right now (or at least what I would say is extensive?), that I can physically see, and even so, I don't have any pain in my day-to-day life. I am really terrified to go to the dentist because I am not sure if they'll want to extract my teeth or what they'll do with how bad it has become. I guess, what I would really appreciate is some support, and maybe scenarios of what they may do.


I will attempt to post some photos on this thread of what my decay currently looks like, for people who would like a better idea of what I am trying to say. I apologize in advance for people who are easily perturbed by these kinds of things, and for the poor camera quality of my cellphone.

Thanks to all who attempt to give me any advice on this. I really appreciate it.






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Welcome to the forum. While I am not familiar with your particular bleeding disorder, a quick Google search produced guidelines for dentists when it comes to treating patients who have it. It is definitely something that would have to be mentioned to the dentist, or perhaps further testing would be required through your regular doctor ahead of time. It's hard to say since I am not a doctor.

That being said, while extractions are necessary for some, good dentists will do anything they can, within reason, to preserve original teeth. I really thought my teeth were a lost cause for so many years. I had so much tartar build up on my front lower teeth and my back molars on one side, that it took 4 hours (under sedation) to have it all removed. I was certain that my teeth would fall out instantly since there wasn't any calculus left to hold them in place (talk about gross). Anyway, that was not the case at all and it turned out that I had pretty normal looking teeth under that 30 years of accumulated gunk. I also had many lines, spots, and stains in various colors that I thought was entirely cavities. Now, I do have a fair amount of cavities that need to be taken care of, but most of what I saw was just tartar that is now gone.

Long story short, many of us here expect the worst when it comes to the dentist, which is why we fear it so much. A good dentist will not belittle you or think badly of you for having decay. The fact that you are not having pain can be a good sign. It really seems to depend on the person or the teeth themselves. I have 20+ cavities that we be filled next month and I don't feel pain...but my husband had one cavity and it was sensitive (we have the same dentist too).

If you do decide to go to the dentist, I would recommend setting up an appointment for an exam and xrays. I did not have a cleaning or any poking on my first visit. It was purely for diagnosis, discussing my concerns, and going over a treatment plan that would work with my budget. I wish you luck on your journey. :)
 
Enarete

Enarete

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Re: 20 y.o. hemophiliac who has never been to a dentist would like some advice **PICTURES**

Hi and welcome rubyku. I am sorry to read about the vons willebrand desease (thank you for the explanation), which sounds like not easy to live with. Just this alone must be a source for enough fears and worries.

There is no reason at all for you to feel ashamed for not trying to get to the dentist sooner. As a child you were fully dependent on your grandparents and they decided about your care. I cannot see much chance how you could have been able to change that. In addition if they believed that a dental visit might be dangerous then you might have believed it too. So it's not your fault at all and your decision to change your situation now is very brave and responsible. :respect:

Before coming to your teeth, it's very important for you to understand some things about how dental care is supposed to work. The dentist is not a person who decides to do something with your teeth and then just does it. It is your partner who looks at your teeth, tells you what he/she saw and makes suggestions about how to treat it. He/she will also want to know about your medical conditions to take it into account for the suggested treatment and to make sure that you stay safe and comfortable at all times. You are then the one who decides which treatment option you would like your dentist to carry out. You might also decide to go without choosing any of the options and see a different dentist. This means that you are a customer and the owner of your teeth and the dentist needs your consent to do anything with them. This consent has to be informed which means that the dentist has to make sure that you got and understood all the information you need to make a decision. I am mentioning this because it wasn't always like this in the past and your grandparents might have had some bad experiences. It is important that you understand that dentistry nowadays is not like your grandparents thought it was.

Your teeth don't look too bad to me, your dentist might be able to just fill it (he would clean the decayed spots of the teeth and then fill in a material to make it look like a normal tooth again), which is a very easy procedure. Dentists remove teeth just as the very last resort and your teeth do not look that bad at all.

Again, the first thing your dentist will want to do is to talk to you and have a look. After that you can discuss what is going on in your mouth and what the next steps could be.

Have you already look around at practices in your area to see if there is any you might feel comfortable at?

By the way, it's very mindful from you that you marked your thread with the pictures-mark to protect anyone who might get triggered, thank you for that. :)
 
Z

Zoidberg444

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Jan 13, 2018
Messages
42
Re: 20 y.o. hemophiliac who has never been to a dentist would like some advice **PICTURES**

Given that you have never been to the dentist and have therefore never had a cleaning it would be very difficult to diagnose cavities just from looking. I hadn't ever had a scale and polish and i couldn't believe how much crap was on my teeth after 15+ years. Turns out several places i thought my enamel was coming off and where i thought it had cavities forming was just the scale breaking off. The teeth weren't so bad when it was taken off. You are only 20. Even if you do have decay my guess is its still at the treatable phase (a lot better at 20 than nearly 30 like me!).
 
C

comfortdentist

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Jul 19, 2009
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2,863
Re: 20 y.o. hemophiliac who has never been to a dentist would like some advice **PICTURES**

This is manageable with ordination between your dentist and your hematologist.
First off excellent dental care is a key to NOT bleeding. The better health you maintain the less need for invasive treatment and the less inflammation. Avoidance may solve a short term problem and cause a major long term problem.
Also today there are drugs that can be used orally and topically and of course there is the break through recombinant VWF.
 
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