My Plan to Address Dental Problems That Are Common With Scleroderma

Amy Gietzen avatar

by Amy Gietzen |

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I need a root canal! I have escaped the drama of this procedure for over 40 years, but now my fate is sealed.

Before my scleroderma diagnosis, people would actually compliment me on my smile and my straight, perfect teeth. I would only visit the dental office for an annual cleaning or if I had pain in my mouth that became unbearable. Except for those few occasions, my oral health was excellent.

However, living with scleroderma has opened my eyes to all of the dental problems that can arise. I went from having perfectly healthy teeth to developing cavities that were discovered during every visit. I also had mouth decay and abscesses along my gumline.

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In response, I started working straight away with my dentist to protect my oral health. I bought over-the-counter oral rinses the dentist had recommended, and I began to watch my sugar intake.

Next, I got into the habit of doing mouth and facial exercises to loosen up the skin around my jaw and mouth so that cleanings and fillings wouldn’t be so painful and difficult. This is because at times, my lips would split from the forced stretching of my mouth to accommodate the dental tools.

I also used prescription toothpaste and special saliva-stimulating gum. I tried anything I heard of that might help to ease my dental problems.

Unfortunately, it got to the point where I was at risk of losing my teeth, because despite my best efforts, my oral health was still declining. Eventually, my dentist could no longer do his job to the best of his ability. The procedures that were necessary to keep my teeth healthy were impossible to perform without causing pain, and to top it off, the dental costs were more than I could bear. I needed to find someone who could work with me and all of my challenges.

I reached out to my rheumatologist, who suggested I find an oral surgeon that specialized in oncology of the mouth. A few Google searches later, I found a dentist who did exactly that, and more. When I called her office, she got on the phone and spoke to me. She knew what scleroderma is and was aware of the dental problems I faced.

I began to see her regularly, and we worked out a plan of action. Unfortunately, six of my upper and lower molars couldn’t be saved and needed to be pulled. The good news is that I was able to have them pulled in the hospital under anesthesia, so that I was as comfortable as possible.

My teeth extractions caused a lot of pain, and I had some stitches on the sides of my mouth. But overall, the procedure was seamless, and I even had a few cavities filled while I was under anesthesia.

Fast forward five years later, and now I need a root canal. We don’t know if I can withstand the procedure in the office or if we should do it at the hospital while I’m under anesthesia.

Dealing with these types of decisions can be overwhelming, but with the help of my oral surgeon and her team, I can strategize and apply a structured plan of action for each situation that arises.

My mouth issues probably will never go away, even after this root canal. But I am confident that my team of medical professionals can help me overcome any bumps in the road. I trust they will work as hard as possible to keep my mouth and teeth healthy. In the end, that is all I can ask for.


Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.

LEAH avatar

LEAH

I have not been able to locate a dentist/oral surgeon who is familiar with the unique issues of a patient with Scleroderma I live in South Florida, Palm Beach County. Is there a directory of dentists familiar with SSc issues ?

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Christel Goetsch avatar

Christel Goetsch

Hi Amy!

So sorry you’re experiencing an issue in yet another system of your body. I actually just had a root canal, too, but it was probably about the 13th!! Although I have always been extremely fastidious about my oral health, my teeth have a mind of their own! I have a wonderful dentist who is very aware of my limitations and the endodontist who did my root canal was also very compassionate and worked with me to minimize my discomfort. (He made two visits out of something that normally only took one visit, and that was fine!). I am enjoying being pain free in my mouth right now and am doing all I can to keep it that way as long as possible…
Best to you in whatever direction you take in dealing with this pesky problem. Please feel free to reach out if I can answer any questions for you!

Christel

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Laura Luna avatar

Laura Luna

Hello Amy!
Hope you’re doing well.
Could you provide the name of your dentist?
I’m in the NYS area too and currently need an extraction and the hospital that’s been recommended to me doesn’t have any appointments until July. My regular dentist is no longer able to work well with my limited mouth opening.
I’d really appreciate all your help.
Take care

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Amy Gietzen avatar

Amy Gietzen

She is at ECMC Dr. Sullivan

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