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Dee L

Oral Specialists

31 posts in this topic

Hi all

 

I have systemic sclerosis with heart and lung involvement and am doing extremely well since going into heart and lung failure in June 2011.  With great support from my health team, I have now recovered from Myocarditis and my lung function has improved.  Long may it continue  :emoticons-yes: 

 

I now need a couple of teeth extracted and my dentist referred me to a local specialist with a view to him extracting under a general anaesthetic (complications with the size of my mouth - story of my life ha ha). However the anaesthetist has discussed with my local Cardiologist the risks of using a 'general' as I have an irregular heart rhythm and Atrial Fibrillation and they have concluded that I should not have the procedure under 'general'.  So......being a brave lass I suggested they extract with a 'local' but nobody is willing to do this.

 

I have done a little research on the web without success and wondered if anyone knows of or has experience of an oral specialist who has experience of Scleroderma patients?

 

Thanks in anticipation.

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Hi Dee,

 

Firstly, what super news that you've now recovered from Myocarditis and your lung function has improved. :emoticons-yes:

 

Coincidentally, I have to have a tooth extracted in a couple of weeks; because of the medication I have to take (Alendronic Acid and Prednisolone) my dentist is very chary about removing the tooth herself and I have to have it extracted by a specialist (at huge expense, I might add!! :rolleyes:  Rather like pet insurance, when it actually comes to it, I find the private insurance I have doesn't cover extractions by a specialist......Hmm!! :( ) The specialist is actually coming to the dental practice I use and as far as I know, she'll be removing the tooth under a local anaesthetic. She has been briefed by my dentist about my having Scleroderma and the medications I take; I've got an appointment with my dentist a week before for her to make sure everything is okay and to give me a special sort of mouthwash to use and some antibiotics to take afterwards to minimize any chance of infection or any other problems.  I'll post afterwards and let you all have all the grisly details!! ;) :P

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Jo,

As you have no doubt read in the past week, I have been on Alendronic Acid or "Fosamax" for the past 7 years.   A few years ago I talked to my dentist about having a couple of implants to replace some of the teeth which had been extracted, mainly because of the damage from Sjogrens in my opinion.  

 

He was fairly confident about being able to do the procedure although he did tell me about the possible effects that can be caused by Fosamax therapy.

 

In my case we sailed through the whole thing with flying colours.   Nothing, except an episode of bleeding that took a while to get under control, happened and to date the new "gnashers" are doing a sterling job. 

 

As a side comment, I discussed with my rheumatologist the idea of ceasing Fosamax treatment after all these years, and the upshot of that is a review by a Physcian and Endocrinologist, taking note of my DEXA scan results and blood test, which has advocated me staying with the therapy until 2016 :emoticon-dont-know:.

 

I was sort of hoping that I could cut out at least one thing from my drug regime but it would seem unlikely just yet.

 

I have had another, expensive, visit to an Oral surgeon in the past year and that went without a hitch too.   At least that is some good news.

 

Judyt 

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Hi Judy,

 

In my case, I'm afraid implants are out of the question; my dentist has told me that in her opinion my jawbone isn't strong enough for them to take properly. In any case they're eyewateringly expensive and of course, not covered by my private insurance......why am I not surprised by that?! ;)  :P  

 

We discussed several options, including another root filling on the offending tooth (it's already been root filled and crowned once and this is why it will have to come out) and the upshot is that if I want to be able to enjoy my food without having it in pureed form, I'm going to have a small plate with the removed tooth and several others (which were previously extracted) on it. At first I was horrified, but then thinking about it, coupled with the fact that my mother has had a similar plate for the last 20 years and never had any problem with it, I decided that this would be the best option and I could replace the other teeth I've lost at the same time. Apparently I'll have to wait for six months though, before the plate can be fitted, to allow my jawbone to settle after the extraction. I considered this was a small price to pay to regain a Hollywood smile!! ;)  :lol:

 

Kind regards, 


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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That sounds like the best solution Jo - hope it all goes well for you.

 

In my case, just to remind others of some unforseen problems, I have Sjogren's as do many of our members.   For us a plate is not really a viable solution because the absence of saliva means it is very hard to keep a plate in place. 

 

Thank goodness the first dentist I saw at a new practice in 1998 or so refused to extract teeth and give me a plate because soon afterwards the Sjogren's made itself very obvious and by now I could well be a toothless old crone.

 

It seems that there are no end of things to consider in almost every situation.   However I won't even start to hint at how much I have had to spend to keep at least some teeth in my mouth.

 

Judyt

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Dental implants cost around £1k per tooth! Ridiculous really, if they were less more people would have them making dentists more money, something they clearly want judging by their private fees!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thanks everyone for your response.  I hadn't got as far as considering dental implants! but thanks for the heads up.

 

Good luck with your extraction next week Jo.  Keep us posted as to how it goes.

 

I have now found reference to oral specialists at Guys, Kings & St Thomas' Institute who consult with Rheumatologists so I now have the difficulty of convincing my local government that this is a necessary referral as nobody local is willing to touch my teeth with a bargepole!

 

Take care

Dee

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Hello Dee

 

Is that a medical or technical term  "with a bargepole", will that be under reason for referral? :emoticon-dont-know:  :lol:  :lol:


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi All,

 

Well, I've had the extraction today under a local anaesthetic; the reason it's been delayed from my earlier appointment is because soon after I originally posted, I contracted a rather nasty virus which caused my mouth to come out in the most dreadful mouth ulcers which have taken three weeks to heal. (I wasn't going to allow anyone to touch my mouth at that time, on pain of death!! ;) )

 

However, the extraction itself was absolutely no problem and although at the moment I have a large blood filled hole in my mouth, the specialist is quite confident that it will heal successfully and I have another appointment in a month's time to just check that everything's going okay. For our members who may be a little afraid of the pain involved when having a tooth removed, I can honestly say there was none at all and the most excruciating part was writing out the cheque at the end!! ;)  :lol:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi All,

 

Back to the subject of teeth and aging bones!!   First of all Jo hope everything goes well and your socket heals nicely.   I am sure it will because in spite of the warnings to the contrary I have always healed OK.

 

On the subject of therapy for our crumbling bones, I have just this week got approval from the Endocrinologist to have an annual infusion instead of the weekly Fosamax.   It costs about $150 for the nurse fee, but I am hoping it will be worth every penny and save my poor cirrhotic liver from at least one drug it has to process.   Although on thinking about it I guess the infusion has to be processed somehow anyway :emoticon-dont-know: .

 

Anyway it will save the weekly bore of having to remember to take the darned thing then remember not to eat too soon.

 

Judyt

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Hello Jo

 

Mighty glad you got that over with and yes the sting is in the tail! I am sure it will heal well and thank you for saying how painless it all was!

 

Hello Judy

 

That's good news, sometimes less is more!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Jo,

 

I'm sorry you had to bid a tooth goodbye.  I have also had to have many teeth pulled, and usually they are such a bother beforehand that to have them out is a piece of cake by comparison.

 

What are you going to do to replace the tooth?

 

:emoticons-group-hug:


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.

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Thanks Shelley and everyone,

 

The socket seems to be healing over nicely, so in a couple of months I shall have a crown fitted on the tooth next to the extraction and then a small plate with a few false gnashers on it. I didn't really want to have false teeth, but I can fill the gaps left by previous extractions, so have a full mouth of teeth again!!

 

I can't resist that old joke "Your teeth are like stars.....they come out at night!!" ;) :lol:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Jo 

I'm so glad to hear the extraction was ok & that you are healing well. I've had to have some teeth out and I have to say they came out incredibly easily but then my front teeth are also loose which the dentist thinks is due to the SSc & Sjogren's. So I'm just trying to look after carefully all my teeth for as long as possible.

 

Buttons

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Hi Buttons

 

I too have had to have extractions over the past few years, following abscesses and tooth loosening due to Sjogrens, Sclero gum disease and my front teeth are also now loosening.  

 

I was referred to the Eastman Dental Hospital in London some years ago and it now appears that I might fulfil the criteria for prosthodontic implants due to my unsuitability (lack of saliva) hindering adhering a normal dental plate.  I now need to wait and see what happens next as I have had to be re-referred to the Eastman by my dentist.  Unfortunately, in spite of a great deal of dental care and attention it has come to this but at least I know that the pain associated with loose and failing teeth will be reduced eventually.... always a positive somewhere to look forward to I hope!

 

Best wishes

Sue

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Hi Jo

 

So pleased that all went well and healing nicely.

 

I am now waiting to see someone at Southampton General Hospital on the 12th November for a pre-op assessment to see if I am suitable for extraction (originally two teeth needing extracting).  In the meantime I have now discovered a hole in a tooth on the opposite side and now have three loose teeth on the bottom which I am clinging onto for dear life ha ha.  Perhaps I should start looking through the glossy magazines for a super-duper full set of falsies to replace them all at the time of my extraction.  I wonder what toast is like dipped in tea ha ha.

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Hi Dee,

 

Thanks for your good wishes.

 

I do hope that your pre-op assessment is successful and you are able to have your extractions sorted with no problems. Although horrified at first at the prospect of false teeth, I'm now coming round to the idea and actually can't wait for my dentist to get stuck in and do the necessary crown and fitting for my small plate. I'm afraid toast is an absolute no-no at the moment as is eating on the left side of my mouth; unfortunately there is a time lapse between extraction and the fitting of the dental plate, to allow the gum to settle down.

 

Maybe I'll lose weight?.....I wish!! ;)

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello Sue

 

I am glad you are getting good treatment and have a dentist who can help address the ravages of scleroderma and associated diseases.

 

Hello Dee

 

Whatever you do don't look at magazines! All you'll see is people with ridiculously, impossibly, unnaturally white teeth, as if they have been painted on! Even if you watch television the celebrities have bizarrely white and totally FAKE teeth!

 

Hello Jo

 

Sorry my dear I had no idea you were having dental issues. You are right, gums shrink so there has to be a period of rest between extraction and plate/denture and then they have to be replaced, again as the gums continue to shrink, giving you your final set.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi,

 

I have a sister who is 23 years old and diagnosed with Systemic Scleroderma when 15 y old and she is struggling with her loss of teeth for the last 3 years and she is under the care of Guy's hospital but we are running out of options.

 

She is very demoralised by her look and if they cannot help her, it is going to be a disaster.

 

I am sorry but I thought I would speak about it because she would never write about her issues on a forum. She lives with me at home and we have been fighting for few years now. I am trying my best, but I feel low sometimes specially now the disease is getting more visible and affecting her teeth.

 

She reacted to Mofetil-immunosuppressant- and she is on no therapy for now apart from her Raynaud's Phenomenon tablets and omeprazole.

 

She was at in Guy's hospital today and came back very upset because they don't even think she can have bridges or dentures and an implant seems out of question on such an inflamed gum. 

 

Hard to take all of this, but we keep going!!

 

Thanks for listening.

 

Amine

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Hi Amine,

 

Welcome to these forums to you and your sister.

 

I'm very sorry to hear of the dental problems your sister is experiencing; it's bad enough to lose teeth at any age, but it must be extremely upsetting for such a young person.

 

We have a medical page on Dental Involvement which I hope you'll find helpful and informative. 

 

I've not been referred to Eastman Dental hospital myself, but some of our members have been there with satisfactory results; perhaps it may be possible for your sister to be referred there? They do seem to have a lot of experience with Scleroderma patients and perhaps they may be able to offer your sister some help and advice.

 

Now that you've found our forums, please do post again and let us know your sister is getting on.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Amine,

 

As Jo has said, welcome to the forums and we hope you keep in touch here because there is an enormous amount of very good information available.

 

Systemic Sclerosis has more far reaching effects than just the Dental problems which are cropping up at the moment and I think it is important for you to help your sister to get good advice and maybe a second opinion from another Specialist.

 

I understand that she doesn't feel able to come online herself so it is just as well you have done so.   I have had Scleroderma since at least 22 years of age and maybe earlier and I can well remember how I felt then and I didn't have any visible signs and no diagnosis either.   I would have been absolutely mortified if I had faced what your sister has to cope with.

 

Keep up the good work and good luck with finding more help for her.

Judyt

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Hello Amine

Welcome to the forum and thank you for being such a wonderful support for your sister. I would agree with Judy in that your sister needs to surround herself with a medical team that specialises in scleroderma. Being surrounded by doctors in the know makes you feel less helpless and more able to cope with the demands this disease places on the body. I would also recommend she gets a referral from her dentist to the Eastman Dental clinic who specialise in all types of dental issues and as already said other members of this forum have been referred there themselves.

You may also wish to consider having your sister referred to a scleroderma expert and there are a number of them in the UK, in particular the Royal Free London. Although your sister's main symptom may be dental, scleroderma is a progressive disease and she will lose nothing being under the care of an expert. In addition mycophenolate is only 1 of the immunosuppressants available and if your sister could not tolerate this drug there are others that could have been offered.

The idea is to dampen down the immune system and prevent scleroderma from doing as much damage to the body as possible, you don't need to be seriously ill to start immunosuppressant therapy, the hope is that it will prevent you from becoming seriously ill. Of course there is no guarantee it will do anything of the sort.

Your sister may also wish to consider some type of counselling, having a rare, incurable, debilitating illness is unsurprisingly a life changing experience, for the person with the disease and their nearest and dearest. I have had bereavement counselling myself and I think I had already had scleroderma some 5 years at that time. Some things you feel immediately and others creep up on you with the passing of time. If you browse the forums you will find many other discussions about the emotional impact of scleroderma and counselling. Although it's not for everyone you would be amazed the difference just talking to another person makes and it is something that we can do to help ourselves, we may not be able to stop the disease from ravaging our bodies but we can certainly do something to keep our emotional life in balance.

take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I have also had a lot of dental problems. In 2010 I had all of my teeth removed and have dentures; they are not gleaming white, they matched my tooth color and I got to pick what color I wanted. That was cool! No tea with my toast. Once I got used to them eating is easier than it used to be with many missing teeth. I use a dental adhesive on my bottom teeth but my uppers are fine; the only problem is right after I eat I have to clean my dentures or it starts burning under my upper plate. I have also eaten caramels; they are very sticky but the adhesive helps.

 

Good luck with yours; I hope you have a good experience 

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Hi Quiltfairy,

 

Having had my plate with three false teeth on it for the past 6 months, I must say that I'm absolutely chuffed to bits with them! :)  Like you, my dentist matched the colour of my remaining  teeth and once in place, even I can't remember which are original teeth, crowns or dentures. ^_^  I don't need to use any adhesive with them; there's a rather natty little arrangement whereby two of my crowns have small hooks on them and the plate slides seamlessly onto them, is held in place by them and fits snugly in my mouth.

 

I wouldn't dare risk eating caramels, though; I think you're rather brave to attempt that and my dentist would have a fit if she thought I expected my plate and teeth to withstand sticky sweets like that.....nougat is an absolute no-no as well!! ;)

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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My dentures are a full plate so I have nothing to put clips around. I have noticed though that since my diagnosis of scleroderma that my lower jaw is getting smaller, so I need to go in and get them adjusted; I think maybe the bone is being absorbed and I will have to talk to her about what to do about it as I was still pretty healthy when I had my teeth extracted.

 

I make homemade caramels for the holiday season every year and I under cook them a little so they are a little less chewy. I just cannot resist the temptation.

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