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9 replies to this topic

#1 Helen


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Posted 07 January 2009 - 08:30 PM

Hi all

I have finally paid a visit to the dentist since having Sclero. He wants to remove a back tooth. He has never heard of Scleroderma and I told him about my small mouth problems.

Has anyone had problems with extractions....I am bit worried about bleeding and infection.
Would appreciate any suggestions.

Thanks in advance.


#2 Little Red

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Posted 08 January 2009 - 02:11 AM

So sorry to hear you are having dental issues. My advice is get a second opinion.
Is there anyone you can talk to or get a referral to another DDS that would be more
caring? I’ve had a lot of dental issues and thank goodness for the knowledge & caring
DDS I’ve been too. My thought are with you.
Little Red

#3 kellyA


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Posted 08 January 2009 - 02:50 AM

I never had extractions but I did have the rooting and scaling done which is very painful and some bleeding, maybe you need to see a dentist that understands the whole sclero thing. I have a very small opening and he works well with me and it turned out fine. I too was concerned with infection, just make sure you call if you have any problems.,

Good luck keep us posted!


#4 Shelley Ensz

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Posted 08 January 2009 - 06:33 AM

Hi Helen,

Pediatric dentists (family dentists who also work on children) are more accustomed to working in small mouths. My family dentist is great! They have small impression plates available (which is important as it hurts if they use too large of a plate), child-size tooth rests (to relieve TMJ), etc.

They don't necessarily need to know about scleroderma and it would be shocking if you happened to stumble upon one who did. But *you* need to know about scleroderma and how to teach them how to care for you properly!

Such as, remind them (each time) that you need a child-size impression tray; that you need a child-size tooth rest (they somehow jammed a larger tooth rest in my mouth at my former dental clinic and it was nigh impossible to get it out).

Ask them for recommendations and free samples for dry mouth toothpaste and mouthwashes. If you are having a significant problem with cavities due to dry mouth, then you may also need a prescription-strength toothpaste. Ask them for the prescription...and for a free sample of it.

For novocain, insist that they use "no epi" which means, "no epinephrine", as epinephrine can cause attacks of Raynaud's. This means the novocain will wear off faster so they may need to give you more shots or interrupt the procedure to give you more -- but it is better than a severe attack of Raynaud's on top of it all!

Remember to dress warmly and in layers for your dental appointment as they usually keep the rooms quite chilly (for me). I often even need to leave my winter coat on...but whatever it takes to remain comfortable is worth it.

As it happens, sometimes bright lights (especially straight into my eyes, like at the dentist) and certain noises, like a thumping beat in some music, can trigger either a normal headache or a migraine for me. It's much worse if I've had an unrefreshing sleep the night before. They have goggles to shield light; ask for them. I also ask them to turn down the music in my room when I sign in for my appointment, to be on the safe side.

I've had lots of teeth pulled <sigh> and recently just had a cap put on a back molar. They managed fine. I did get a few interesting tongue sores from them holding my tongue back with the suction hose. So I returned and had the sores "burnt off" chemically. I'm sure that's not the name for it but they have better stuff than the drug stores! The dentist offered to give me my own supply of it, since I get so many mouth sores, but I declined as I would never intentionally inflict that much pain on myself, so I'd rather have them do it.

Arm yourself with information. Hunker up the guts to be proactive about whatever you need to protect your health and well-being while at the dentist. And make sure your dentist has great experience dealing with children and has child-size equipment on hand!

Perhaps a silly thing, but something that is important to me, is that my dentist has very small hands, which I think suits her particularly well to working carefully in very small spaces.

If you are worried about bleeding, make sure that you discontinue all medications that worsen bleeding, before your appointment. Common culprits are NSAIDS (like aspirin) and anything that thins the blood. Ask your primary care doctor about that (don't just do it on your own if it is a prescribed medication).
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Amanda Thorpe

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Posted 08 January 2009 - 01:23 PM

Hello Helen

I have not been to the dentist in approx 10 years, I have only had sclero for 17 months so clearly I HATE dentists. Let me know how you get on as I have to get to one sooner or later.

I would echo was Shelley said in a less eloquent manner, don't take any guff. YOU are paying, YOU are the patient, it's YOUR mouth and YOUR pain. Don't suffer unnecessarily because you don't want to confront the dentist, YOU pay so he works for YOU!

Hope the capital effect is empowering ya! :lol:

Take care.

Amanda Thorpe
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#6 Snowbird


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Posted 08 January 2009 - 04:19 PM

I can't add anything better than already on this thread....and yes, Amanda, the CAPS made the picture...you made me laugh! :) :)
Sending good wishes your way!

#7 Helen


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Posted 08 January 2009 - 08:08 PM

Thanks for your replies guys. After reading your replies I decided to cancel my visit with this dentist and will go to see a female dentist (I found there is one in town that works a lot with kids). The male one seemed nice enough, but he was fairly big with big hands :unsure: and one thing he said was.....sometimes you have to be rough to get the job done. That scared me a bit...actually a lot.

Thanks Amanda, you gave me a good laugh. I think I will try my empowering skills on a woman though..lol.
I am naturally a bit timid but I am learning to stand up for myself since getting this disease. Will let you know how I get on.


#8 marktwain



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Posted 10 January 2009 - 12:03 PM

This might not help much, it's Springfield, Missouri, but my wife found a great dentist who understands her problem and she has no discomfort on visits! You can find dentists who understand the autoimmune diseases and treat you accordingly.

#9 Helen


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Posted 10 January 2009 - 10:08 PM

Thanks marktwain, but I'm in Australia. I am going to try to get into the same dentist as my daughter-in-law who has Lupus. She is supposed to be very good, just hard to get into.

#10 MaryFanPhilly


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Posted 11 January 2009 - 05:02 AM

Hello Helen and Gang,
I have worked in the dental field for over 20 years as an office manager. I can tell you, there are plenty of caring dentists out there who if they don't have first hand experience, will either do research or know a colleague who does. The ones who cry off are just lazy or stupid. They don't want to take the extra time.
Every area has a local dental society that should be listed in the phone book, Australia should be no exception. They are a good resource for steering you in the right direction.
Personally the dentist I was working for when I was diagnosed had truly never seen a sclero patient. Right then and there he pledged to make himself an expert. I have had lots of ups and downs with my mouth, most recently broke a molar and was terrified to get it fixed. My mouth is so small and the skin is so tight, and my jaw joint and muscles are tender.
He's a big man, he has big hands, but he did a wonderful job with a lot of time off for me to rest my muscles. He used a pediatric bite block to help keep my mouth open. His assistant couldn't do much because my mouth is so small. Even though I have been in the field for so long,and knew what he was doing, he stopped to tell me what he was doing and how long the next step would take so I had an idea how long my mouth would be open.
All it takes is a little time and compassion. He didn't do that just because he used to be my employer, he did it because he is a wonderful human being and dentist.
I have been gratified to see that sclero is becoming better known in the dental world. One of the major dental publications had a long article about it recently.
There are state and local dental societies, and of course the American Dental Association and Academy of General Dentistry, all of whom should have help available for us here for referrals.
Good luck and don't take the guff as Amanda says!
Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's