Issues with teeth

[Kc_1411]

Hey all so my husband has scleroderma for 15yrs. His teeth are in a bad way bleeding gums severe deterioration. Also his mouth has shrunk so can't open it wide when visiting dentist. Ok so the issue he is facing he is in severe pain I think he needs two teeth removed as they have deteriorated so bad. He won't visit the dentist as he can't open his mouth, previously had his tooth removed but complains now as when he eats food, it pushes down in the gum and is very uncomfortable. It's hard to convince someone to go and see the dentist when he just thinks he has no options that will help.

Anyway was just wondering if anyone else has suffered with the same issues and what u used / did to help / did your dentist do anything different ??

Thanks guys hope u r all well xxx

[MEW53]

Hi KC1411,

I have had problems with teeth, small mouth with Scleroderma.

Last October I needed a molar out and the dentist was unable to do it, I got referred to the Oral & maxillofacial Surgeon at the hospital. He removed the tooth and gave me 5 injections to numb the area ( they can use smaller surgical instruments for kids).

He asked me to sing which opens the mouth, it was difficult to get to the back of the mouth, but he managed to remove it. If the gums get infected it is very bad for us Scleroderma suffers to try and fight it, so best to get professional help.

Originally the tooth removed was going to be crowned a few years ago but I was so ill then it was impossible to do it then and was then forced to have it removed cos it had broken and had become decayed.

Strangely enough I am going to the dentist this week to have another tooth crowned, I have changed to a more experienced dentist who I tried when my dentist was away on maternity leave, so decided to stay with him. I have 2 appointments with 30 mins in the chair each time, I have Vaseline to make the lips easier to open a special neck cushion to support my neck, I see the hygienist every 4 months and try to smile as much as possible to exercise the mouth.

Try and get your husband to see his dentist, we need to protect our teeth.

I hope this helps.

[Kc_1411 in reply to MEW53]

Thanks great tip with the Vaseline. Will speak to his consultant just seems such a nightmare to get an appointment sooner

Also do u Have any special products you use?

Toothpaste etc xx

[MEW53 in reply to Kc_1411]

Kc_1411,

I use Vaseline on lips quite a bit, but also use Cetraben emollient cream prescribed by GP. I also use DURAPHAT 5000 toothpaste again prescribed by GP, dentist recommended it in the beginning and said good to use cos it is a bit of a barrier to stop bacteria especially as my hands are badly curled up so I have difficulty brushing my teeth properly.

Dentist tomorrow for crown prep, not looking forward to it!

[Kc_1411 in reply to MEW53]

Thank u will defo look into all these things don't worry ull be fine would be good if they could put u to sleep while having your sleep done x

[rosella24 in reply to MEW53]

Thanks for the vaseline tip! Will try it on Friday when I've got to have a filling!

[amd21]

Hi there depending on where you live there may be a special needs dentistry service which is for people with health or mental health/LD issues that impact on dental health. These dentists have extra training and extra resources to help people with conditions such as SSC. You should be able to find out if there is a local service via your CCG website

[Sparkinside in reply to amd21]

Hi Amd21, I'm relocating to the UK and will need to register with a dentist and i have SSC and mouth opening limitations so helpful to know some dentist have extra training . can you clarify what the acronym CCG website relates to so i can research. Many Thanks

[weathervane]

My dentist gave me a prescription for a stronger fluoride toothpaste duraphat.

[amd21]

CCG is the local clinical commissioning group - a consortia of GP'S who set local priorities for the NHS. There are lots of them 9 in Kent alone. Your GP website should say which CCG or just Google your local area + CCG e.g. east Kent CCG.

[Glynis]

My Dentist referred me to the Dental Hospital here in Liverpool , so I now have shared care between Dentist & hospital.If there is anything Dentist has difficalty with she sends me to dental hospital to sort.Also my dentist prescribed duraphat 5000 toothpaste. May be worth your husband asking his dentist to refer him to the special care dentistry at your local dental hospital.

[zenabb]

My mouth has got small which made difficult for the dentist but he did not give up. Maybe your husband needs to change dentist. I had gum problems too.

[Elaine_Hayes]

I have the same difficulty. My dentist refers me to the Dental hospital, I had a relaxant drug given to me at the hospital which enables the dentist to stretch my mouth without causing me distress so the tooth could be extracted. I also have problems through scleroderma with my salivary gland. They are very sympathetic and practical in helping me at the Birmingham dental hospital. The only draw back is that even though they categorise the referral as urgent. It takes a while to get the appointments but they do help .

[Kc_1411]

Thanks for all your comments we're based in London he sees professor Denton at the royal free. He hasn't seen a dentist in years because of the fear of opening his mouth but I am determined that he needs to see one asap.

His appointment with p.denton is not until December I cal for cancellations they seem to never have any. I've left a message with the rheumatology department but no reply if anyone knows of any other way I can get them to pay me some attention please share this is so frustrating. ( was in the hope that p.denton would know who to refer him to)

Thanks x

[rosella24]

Oooh I do sympathise. I've had scleroderma since the 1990s and noticed my mouth was shrinking and getting wrinkled after about five years. I thought that was it concerning my mouth, but oh no. I've lost four teeth in the past seven or so years, and recently my teeth have become periodically sensitive and my gums are sore. I'm looking at finding a remedy, because my mouth is so sore. Acid reflux hasn't helped. I'm lucky in that my dentist knows about scleroderma and is aware I can't open my mouth wide. You can be referred to dental departments at hospital where they use smaller instruments and specialist equipment for example, for people who can't open wide. Do urge your husband to see a dentist before his problems get worse. Let's face it, things never get better by leaving them alone! Good luck.

[Thinman]

I had issues with the dentist I was seeing. They didn’t know how to deal with my ever shrinking mouth. I switched dentists and found one that was more comfortable working with me. Ask around to see if you can find a dentist that is familiar with SS. My new dentist uses a bite clamp (child size) to help me keep my mouth open. It’s still tight but the guard helps.