Dental Tips for Scleroderma & Why I Love Working With Students

Day 21 of Wego Health’s NHPBM Bonus Prompt: Raise Awareness



Dental Health


I have not been able to keep up with the 30 day 30 in 30 for Wego Health for a few reasons, but one is I recently had some dental surgery.  Last monday, I underwent a Connective Tissue/Gum Graft.  This is my third.  Yes, you read that correctly.  So for those of you doing dental searches on dental issues with scleroderma, those graphic pictures are more likely not to be your fate.

But before we get to prevention, lets talk about how I got to the point where I needed to have my gum tissue replaced.  (It’s my blog and everything revolves around me, remember?  Or so I would like to believe.  Shh-This is my ego trip, so strap yourself in and just enjoy the ride while I make my point.)  If I know so much about prevention, how did I let things get to a point where I needed dental surgery?

Often, less immediate life threatening issues like dental care, are put on the back burner while things like breathing and blood circulation are addressed.  While addressing other issues, my gums were effected.  Raynaud’s Phenomenon, the cause of my poor circulation, is not limited to fingers and toes.  More attention is paid to those areas because they are the most severely effected, but again, Raynuad’s can happen anywhere there’s muscle tissue around a blood vessel.  (Scleroderma- such a giver!)

One symptom I often ignored during Raynaud’s attacks was numb tongue.  I thought it was stress, and stress is a contributing factor, but it was symptom of another problem:  Dental involvement in scleroderma.  I could feel the blood being restricted in my tongue, so I knew to take measures to bring blood back to it by moving my tongue around and warming my body.  What was going on that I could not feel, was blood flow restriction to my gums.

Most people don’t connect digestion with dental care, but it is becoming more known that digestion begins the moment we see or smell food. ( I’ll spare you an explanation, but if you need it, here it is at  


Scleroderma is different for everyone, but we share similar symptoms.  Here is what happened to me:

Long before I had symptoms of scleroderma, I was very consistent about the care of my teeth.   Braces not only cultivated deep seeding hate of my orthodontist and create such a vivid memory of tooth pain that every time I hear the word orthodontist, I can still feel the pain of  metal bands being hammered into my mouth; it taught me I want to keep my teeth in my head and intact.  Which was lucky for me.  My own gum recession in scleroderma started in 1994, but I did not need my first frenectomy until 1999.    Luckily, in 1999 I met the first periodontist that taught me safe, preventive brushing that stimulated blood circulation that helped me keep my gum tissue intact.

Now, here’s the part that is uncertain: Scleroderma is a progressive disease.  These progressions can happen slowly or in the blink of an eye.  In my case, it progressed slowly, but one of the gingiva in my teeth seemed to recede overnight.  It probably didn’t, it just felt like it because there is so much to keep an eye out for in a progressive disease, I can only equate it to playing bingo with 20 cards.  Before you know it, Bingo!  -It’s time for a procedure to fix it.  Good times.

The frenectomies and prevention helped, but the inevitable came.  I had my first gum graft in 2001.  The Veteran’s Administration covered my surgery by a periodontist in private practice.  (I love my socialist health care.)  The same doctor who had been doing my frenectomies and teaching me about prevention (also covered by the VA) did a wonderful job harvesting connective tissue from my upper pallet and attaching the tissue.  It was a success and the site is still thriving today.  The second one I had was at the VA hospital.  All VA hospitals are teaching facilities and there was a periodontist on his internship there.  He too did an excellent job.  This third one was sent out.  The periodontist at the VA this time wanted the dental school to work on it.  He felt they could better accommodate me.

Now, you may be thinking, “Dental STUDENTS for oral surgery that may have difficulty healing?!!  Are you high, Karen?” The answer to both questions: Yes.  And not as far as you know.

First of all, students are a joy to work with.  They have fresh, open minds.  They want to find solutions, not just because they have to be highly competitive, they also care and most important: they are not afraid to ask questions of the patient or those who are teaching them.  Everything they do has to be approved by a teaching physician.  With medical students we get the best of both worlds:  Inquisitive minds and years of experience from their teachers.  And it is not an uncommon experience to teach something about a rare disease to the overseeing physician with years of experience.  Most of them WANT to learn, but there is always the exception.

There was this time a doctor was convinced I had gout during a hospital stay.  He was a podiatrist who had a group of students he was trying to show that I was nuts and had no idea what I was talking about.  I may be nuts, but I new what I was talking about.  I requested to see a rheumatologist in front of his students.  After taking my request, he made some comment to his students that it would be a waste of the group’s time, but he had to humor me because I requested a second opinion.

The on-call rheumatologist came in to see me.  He agreed I had an infection that was probably a MRSA flare, which had been clearly documented in my medical history.  An hour later, he stopped by with the rhueumatolgy department head, who knew me as an outpatient.  He concurred with me and the rheumatologist on-call.  I was taken off of the podiatry service and a rheumatologist was now overseeing my case.  It’s a common glitch in hospital care.  If you have a heart attack, you see a cardiologist.  If you have a swelling in your foot, you see a podiatrist.  My  experience has been that they address the feet separately, instead of as part of a whole.  This is changing by the way, but apparently the podiatrist overseeing my case did not get the memo.

The next morning, the podiatrist came back with his gaggle of students.  Unfortuanly for him, it appeared he did not see that my chart had been updated.  As the students donned their protective gloves and masks which is protocol for patients with MRSA, a student read from my chart that my diagnosis was not gout, but cellulitis and most likely MRSA.  The resident was quiet, so I asked if he had any questions for me about scleroderma.  (Okay, that was kind of an ego trip, but I did warn you.)

Back to my latest dental adventure:  I have no problem working with dental students.  Honestly, I work with students  whenever I can.  I met the doctor who would be doing the procedure at my first appointment at the dental school.  She is a graduate student and I think she and the others I met will make great practitioners, because they are already great practitioners as students.

What’s really cool about students is that they have to evaluate everything with a full exam.  They have x-rays and records to go from, but they do not just jump in, they take their time.  My doctor did a wonderful job on intake.  She had questions for me and the resident who was overseeing her work.  And because I am 42 now and have the jaded perspective of age, some of these students I just see are adorable- which I hate to say because I don’t want to discredit their professionalism with their adorableness- it’s the exact opposite.   It’s their youth, enthusiasm and natural curiosity that inspires me.   Not only do I feel encouraged to go forward to the procedure, I feel inspired to learn from them; share what I know with others in early stages of scleroderma, and other diseases that effect gum health.   The brushing techniques I have learned, I teach my son.  I remind him that pretty teeth are of no use if they wont stay in your head, so take care of your gums.  This last procedure, hasn’t exactly stopped him from prying Legos with his teeth, but the seed has been planted and I catch him stopping himself.  Yes, these students not only teach me about gum health, they are teaching me ways to scare the hell out of my kid so he continues to have healthy gums.  Winning!

So, back to my procedure.  I did not eat anything but a protein shake for my procedure at 1pm.  I have Barratt’s esophagus, reflux from hell and my epiglottis has been on hiatus since the 90’s, so preparing to be in a reclined position is of utmost importance.  My only regret: when the doctor asked me if I would like to use the bathroom before the procedure began, I should have said yes.  The lesson: When anyone asks if I need to go, I make a trip whether I need to or not because they know something I don’t regarding how long I will not be able to get up.

I was in the chair for the procedure for over three hours.  My doctor (and I will be referring to students as doctors because they deserve the respect- no matter how adorable.) My doctor made sure I felt no pain.  She could tell by my body language and eventually just by looking at my eyes when I needed more anesthetic.  This procedure is done while awake.

I have heard many people say things like, “I could never do that.” or ” I would just let my teeth fall out.”  My reply:  Yes you can.  And no you won’t.  You have to do this things.  We all have to do things that seem unbearable, chronic illness or not.  I use meditation and deep breathing.  I actually fell asleep while my doctor was cutting open my pallet.  At first, I felt like a steak, but once I made a fun of it in my head, I reminded myself she has probably practiced on many cuts of meat.  She had a steady hand and I could see in her eyes that she was watching every move she made, and looking at my eyes to see my reactions as if she watched my face for clues that would indicate pain or discomfort.  Her steadiness was unencumbered by rushing to the next patient.  She took the time to adjust to working with a scleroderma patient with a small mouth, Raynaud’s and healing issues.  And really, I have been a lab rat more than once to more seasoned professionals than I can count.  The great thing about students, is that they don’t second guess.  They can’t, because someone checks everything.

Long story short: The procedure went off without a hitch.  I drove myself home, parked myself on the couch with my dogs and slept with a little help from Captain Vicodin.  I was sore, but believe it not I was not in much pain.  The next day I woke up and didn’t need anything for pain because I rested the next two days.  I rinsed all week and the following monday, I had my stitches removed by another doctor, because the doctor who did the surgery went home for Thanksgiving.  To be quite honest, had it not been thanksgiving week I would have waited to see her when she returned because I wanted her to see her work.  But the doctor who did see me did an excellent job and even put up with me panicking the next day.

I freaked out the next day.  My skin grafts had always been in a place where I could not see the wound.   So, I woke up, took a peek at my gums and freaked out. It looked like it was coming apart.  I called the school and they fit me right in for an appointment.  The same doctor saw me and an instructor checked it just as was done the day before.  They were so cool about it.  It went something like this:

“Karen how many times did you check it?”

“Not much…” I replied.

“Stop checking it.  It’s healing fine.  Parts are going to fall off. ”

There was more to that conversation, but you get the point.  I overreacted.  Luckily, I did, because on the way home, it felt like the graft totally came off.  I left it alone, then later, a foreign object feeling forced me to check it.  There was a clump of tissue that came off, stitches and all.  This revealed connective tissue adhering to my gum line nicely. Relieved, I settled in for the Colbert Report, but had to turn it off because I laughed so hard, I could feel my gums tug.  No comedy for me.

For more information about Scleroderma and dental issues please check out these links.  And when you do get to work with a medical student, for corn’s sake, don’t call them adorable!

Coming soon: Prevention tips.

Go to these links for more information.

The Scleroderma Research Foundation: Dental Problems 

What is a Frenectomy?

The Digestive System

Raynaud’s and Dental Issues

Connective tissue grafts