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Dentures And Scleroderma


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#1 SDNYC

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Posted 01 November 2006 - 09:14 PM

I will probably need partial or full dentures eventually and was concerned that I wouldn't be able to remove them due to Scleroderma finger involvement.
I have poor circulation to my fingertips and pressing them to any hard surface without padding injurs them. I have contractures in my fingers and am limited in how far they can be separated from each other. My mouth opening is reduced due to Scleroderma and there is very little space between my teeth and the sides of my mouth due to Scleroderma.

I am able to use a padded toothbrush and padded floss holder to keep my teeth very clean now; but, am still losing teeth due to other problems which can't be prevented and a dentist predicted that I will eventually need partial or full dentures.

I was told that I am not a candidate for Dental Implants.

My concern is that I eventually I will have no way to eat solid food due to an inability to teke proper care of dentures.

Specifically, I don't know if there is a way that I could remove dentures from my mouth without pressing my fingertips to a hard surface of a denture, which would damage them. I think I would be able to hold the denture to clean and disinfect it once the denture was removed from my mouth. The obstacle would be in removing a denture if the adhesive bond had not yet weakened.

Are there any devices or techniques that can be used so that Scleroderma patients with extensive hand involvement (contracures, very poor circulation to painful fingertips) and mouth involvement can care for dentures?

I would be grateful for any information.

Thank you for taking them time to read this message.

#2 janey

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Posted 02 November 2006 - 03:47 AM

SDNYC,
I'm so sorry to read about your dental problems. With our small mouth, any dental problems are exagerated. I did find a couple of things on ISN that might help you. We have a section on Denture Problems that you might read. In one of the PubMed cases it briefly discusses a Sectional mandibular and maxillary trays and a collapsed mandibular denture were fabricated for the total edentulous patient. You might copy this one out and take it into your dentist to have him do a little research for you.

Good luck! Please let us know how you are doing and how this problem gets approached for you and solved. I'm sure you are not alone on this one and many more of us may face this challenge in the future.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#3 jefa

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Posted 02 November 2006 - 03:52 AM

Hi, SDNYC - Welcome to the forum. I am sorry your fingers give you so much difficulty. You present some really interesting questions, some that may face all of us over time. I previously had partial upper and lower plates which I have not been able to wear because of general shifting and loosening molars. It may be that others will be able to talk about practical techniques that might be helpful, but I just wanted to reassure you on at least one point - your concern that you will have no way to eat solid food because you can't care for your dentures. My first husband lost of all his teeth and had to have a full set of uppers and lowers made. He never got used to them, at first only wearing them when he went out. I doubt if he has worn them at all in the last ten years. Once his gums healed over, he was eventually able to eat things you wouldn't imagine - even steak. The only thing he really still has trouble with is hot dogs, which he has to eat with a knife and fork.

#4 SDNYC

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Posted 02 November 2006 - 06:36 PM

Thank you for your kindness, jefa, in responding to my Message Board Posting and your reassurance that some people, such as your first husband, could still eat solid food without their teeth or dentures. I didn't know that the gum tissue alone would allow anyone to chew foods as tough as a steak.

Did your former husband have Scleroderma? A complicating problem that I have is that I need to chew my food more thoroughly due to esophogeal involvement, slow digestion, and the medication which I take for acids reflux (Prevacid) which reduces the amount of stomach acid (acid in the stomach normally aids in digestion).

I would also appreciate it if someone with Scleroderma hand, mouth and digestive system involvement could let me know if there is any device or technique that would allow someone to insert and remove partial or full dentures without alot of pressure to the fingertips.

Regards,

SDNY

#5 debonair susie

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Posted 03 November 2006 - 07:18 AM

SDNY, this was a great thread to start also...thank you!

Until I got really sick with Scleroderma and Sjogren's, my teeth were like everyone else's... In good shape. Unfortunately since... I've "lost" 5 and will probably lose more. Small mouth is definitely a problem, but having been told by one dentist...that I'm not a candidate for dentures... WELL <_< ! Although I don't have finger contractures like you, I do have bone reabsorption, which has caused my fingers to shorten quite a bit... becoming more and more of a problem all the time :( .
Hopefully, those of us exploring this will be able to succeed... when the time comes.
I wish you luck with this.

Janey, thank you for posting the link...I'm going to check this out ;)

Hugs to you both!...Susie
Special Hugs,

Susie Kraft
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#6 jefa

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Posted 03 November 2006 - 10:14 AM

No, SDNYC, my ex didn't have scleroderma, rather some bone erosion in his jaw that made all his teeth loose. He didn't seem to have any problems getting them out. He could push out the bottom ones with his tongue. The link Janey gave you was quite interesting. It would be nice if they would translate some of these articles in readable English, though. The second link talked about a hinged plate for easier removal.

One thing I have learned about all of this is to take it one day at a time, not to worry too much about what the future holds. Work with the various medical experts on keeping you as healthy as possible and get creative when it comes to solving your mechanical difficulties as you have with your soft-handled things.

At my rheumatic clinic, there is a team of professionals who all work together. Besides the rheumatologists, there are occupational therapists, physiotherapists, podiatrists, a wealth of medical people and a patient liaison officer who will step in for you when you get frustrated. In between rheumatologist appointments, you go to the rheumatology day ward where the others bend over backwards to see if they can help you. The occupational therapists have been very helpful providing advice on aids and often the aids themselves. Google and other search engines will provide a wealth of information as well. It's hard not to worry, but you have to keep a sense of humour and a positive aspect. I am finding this site very useful for both of these things.

#7 SDNYC

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Posted 09 November 2006 - 07:03 PM

Thank you for your reply jefa. Maybe an Occupational Therapist could specially design some device that would allow me to remove dentures when that time comes.
I would also like to hear from someone out there who has figured out a solution (either on their own or with an Occupational Therapist) to handling dentures despite severe hand involvement in Scleroderma (coupled with the need to chew food more thoroughly due to esophogeal involvement).

#8 MaryFanPhilly

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Posted 17 November 2006 - 05:43 PM

Hi Sweetie, I would try doing some research with the Academy of General Dentistry... they can probably send you in the right direction. I have been a dental office manager for over 20 years and have seen only one sclero patient but many with limited range of motion with their hands etc. I have also seen dentures, full or partial, that actually have hinges integrated into the design so they can be put in the smaller mouths, or flexible 'flexite' dentures which are easier to insert and softer. The AGD has an 'ask the dentist' section on their website which can be helpful. Good luck. Love, Mary in Philly


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#9 SDNYC

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Posted 21 November 2006 - 09:14 PM

Dear Mary in Philadelphia,

Thank you for your kind response in providing useful information.

The idea of flexible dentures that are easier to insert and remove seems like they might be a useful solution for some Scleroderma patients with both mouth and hand involvement.

I will also look into the links that you listed.

Thank you once again.

#10 Shelley Ensz

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Posted 22 November 2006 - 07:09 AM

Dear SDNYC,

I'm sorry you are having such problems with both hands and teeth. I've lost a lot of upper teeth due to scleroderma and Sjogren's combined. I asked for a special partial design without any hooks or tooth rests, since the hooks were causing the adjacent vulnerable teeth to fall out, sooner than they would have otherwise.

My 8-tooth upper partial pops in very easily, doesn't need adhesives (although I use them occasionally), and comes out very easily, with the flip of my tongue (which is why I use dental adhesives for special occasions when I really don't want them flipping out accidentally.)

I also have no trouble chewing with my gums. So rest assured that there are partials and dentures that can be used if your mouth becomes more involved. And of course, visit our page on Dental Involvement for more ideas for coping with mouth involvement.

I doubt that you will have problems caring for them due to your hand involvement, but if you do, you can consult an occupational hand therapist for advice, since they are very creative in finding ways and gadgets to do things that are otherwise nigh impossible.
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#11 Judy Devlin

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Posted 28 November 2006 - 10:22 PM

Hi SDNYC,
I had all my teeth removed in 2003. The good side is I have no more horrendous
facial pain, TMJ and nerve pain or teeth and gum pain. My mouth/gums shrunk a lot in the year between getting temporary dentures until I was fitted for my permanent dentures. My pemanent dentures look like baby teeth.

I only wear them when I go out. I still have a difficult time eating with them-they are not as sharp as real teeth. I have learned to eat almost everything with my gums-even popcorn :-)

Cosmetically I love them. Other than that I would recommend that if you can maintain your lower teeth keep them and just go for uppers. In my case my lowers were being pushed out and crumbling so I wanted them out, but it would have made eating a lot easier if I had kept them.

I have lots of gastro issues and cannot eat much anyways.

Actually the hardest part was getting use to the way I look with no teeth LOL!

As for putting them in and out-the lowers come out-even with glue- easily. The uppers are another matter. have to pry them out if 've glued them. However, if you get a really good dentist who makes really good dentures nd fits them properly you shouldn't need any glue and then they should just pop out with your tongue.

In all honesty, having dentures has been a real ordeal for me and I don't know if that is because of having scleroderma or if I just had a harder time than others to adjusting to them.

Judy
There are over 1,000 patient and caregiver stories on the main Sclero.org site.
Warm regards,

Judy Devlin
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International Scleroderma Network

#12 LisaBulman

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Posted 29 November 2006 - 02:35 AM

I am so sorry for everyone that is having or had trouble with their teeth. Over the summer I had to have a root canal done in my front tooth. When I went to have the final post put in I advised them that it it still hurt. So they decided to wait and I was to go back to the specialist. Of course I put it off as long as I could. I went last week and they think my tooth is broken way up at the root. They advised me to be prepared because I will more than likely loose that tooth. I am horrified to loose just one and I don't think I could handle loosing more. You are all very brave! I canceled my appointment for tomorrow because I am chicken! I wasn't this nervous when I had my cardiac ablation done!!!

Hugs,
Lisa
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#13 janey

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Posted 29 November 2006 - 04:17 AM

Lisa,
Alright girl - don't be chicken. smile.gif You need to take care of those teeth as soon as a problem arises. It only gets worse, the longer you put if off. So please - go see the specialist about that tooth.

Big Hugs


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#14 Shelley Ensz

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Posted 29 November 2006 - 04:57 AM

Hi Lisa,

A root canal takes a lot more time than a tooth pulling. When they pull a tooth (or what is left of it) it only takes a few minutes. And with novocaine, you don't even feel it. I just have a bit of trouble since my gums are so hard that the novocaine spurts back into my mouth, so they have to keep on giving shots and trying different spots until enough gets in that it takes. Be sure to mention Raynaud's so that they use the non-vasoconstricting type.

Then there's some interesting crunchy squeeky sound effects when they actually give a yank and pull it. But the beautiful part is that you only hear it, and not feel it, by then. And it's over so quickly that it's almost hard to believe -- all that fuss over next to nothing!

Eating is no problem afterwards, either. Just avoid that area and talk like a cartoon character while the numbness wears off.

It's a thousand times better than being curled up in pain from TMJ while having a root canal done -- they take forever and a day with those. I've had root canals and caps and tons of fillings, but the tooth pullings rank as the easiest in my opinion...because they are so quick.

So gather up the little shreds of your courage and go for it. Maybe they will let you take pictures for our Dental Involvement page! And a video of a tooth pulling, that would be terrific, but I suppose that's asking too much, eh?

In any event, don't spend any more than 15 minutes dreading it, since in reality it probably takes 10 minutes for the novocaine to kick in plus less than a minute for the pull. You can do it! And you'll feel like a million bucks to have the problem solved, too.
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.

#15 LisaBulman

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Posted 30 November 2006 - 03:00 AM

Ok Ok I am a big chicken! The reason being... it's not just any tooth. If it was my last molar or two I could deal, but it is acyually my FRONT TOP TOOTH!!!

This all stems back to the good ol' Scoring for Scleroderma soccer tournament. I decided to actually get on the field with my friends and I received a wonderfully placed ball, kicked very hard, in my face. Well a month later, root canal, now I will probably loose my tooth!

What's that saying.... No good deed goes unpunished? or something like that..... Well I raised over $5000 I guess I'll have to give up a tooth too! Anything else you need from me Shelley? A vile of y blood perhaps! :P I'll ask about the video but I wouldn't count on it.....

Hugs,
Lisa
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#16 Heidi

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Posted 30 November 2006 - 03:14 AM

Oh, Lisa, I am sorry it is your front tooth!

I would be a bit apprehenisve too! My mother has a front tooth that is not her own....I am not sure now if it is capped or totally replaced...BUT, it looks really good. And, she had it done probably about 30 or more years ago when the technology wasn't nearly what it is today.

Please know you are in my thoughts...let us know when you go and how ti goes.

Warm wishes,
Heidi

#17 janey

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Posted 30 November 2006 - 04:02 AM

OK - I can understand the hesitation on the front tooth. :( Last year I tripped on a 2" step, fell and broke my front tooth. Scared me to death thinking that I was either going to lose it or have to live with half a tooth. Fortunately, my dentist did a marvelous job in rebuilding the tooth. I notice it, but the hubby says he doesn't except if he gets real close and actually looks for it. So a good dentist can do wonders.

Big Hugs,
Janey

#18 Shelley Ensz

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Posted 30 November 2006 - 04:06 AM

Hi Lisa,

I am absolutely thrilled that you sacrificed a front tooth to the cause of scleroderma and that you have committed in writing to making a video of the impending extraction!

In fact you will go down in ISN history as our very first fundraiser plus the very first fundraiser to sacrifice a tooth for scleroderma. So save that precious ISN tooth when it is pulled -- maybe for your next fundraiser, you can auction it off to the highest (and perhaps drunkest) bidder. blink.gif

Also you are following in the fine tradition of ISN front toothers. In ninth grade, while playing Capture the Flag on an island in Canada, I tackled my boyfriend's six-foot tall brother and gave him a royal concussion with the impact from my mouth.

The impact knocked the rim of my teeth loose. I wasn't allowed to eat real food for weeks. It spoiled the whole rest of my camping trip, put a large dent in my budding romance, killed off my front tooth, turning it black and it remained that way for years as my parents could afford the root canal but not the cap. And so forth.

But there are two important points to this post: YOU raised over $5,000 glorious and much-needed dollars for the ISN and you have the pictures to prove it! And I captured the flag!

Altogether, that adds up to a pristine tradition for the ISN and I dare dare double dare other people to follow in our tooth-defying footsteps.

Seriously, of course, I'm really sorry you are losing a tooth, not to mention a front tooth, and I'm very sorry it is on behalf of your fabulous ISN fundraising efforts.


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.

#19 Sheryl

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Posted 30 November 2006 - 02:55 PM

Ok, I lost my front tooth to a tic by a wonderful foot ball pass when I was 13. I did catch the football. But, I also had to have alot of dental work. I have had my same cap all these years. It hasn't changed in color or texture in all these years. I love that it is a perfect match to my other teeth. I have had to have 3 root canals and caps just this year. I've used all my deductable as of June. So, the cap I got just a few weeks ago will be billed after the New Year. I hope the pattern doesn't continue. I also have TMJ and sleep with a mouth retainer type brace. My dentist feels it may just keep my upper jaw from ratical changes. I also asked about future false teeth. He thinks since my bone structure is strong I can continue getting caps as needed. Hopefully, the teeth won't loosen. We can spend alot of money on teeth and Doctor apts. Can't we.
Strength and Warmth,
Sheryl

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