Oral Surgeries with Sjogrens (Plus Trigeminal Nerve Pain)

General
1

Hello. I'm new here so I apologize is this topic has already been discussed. I searched and didn't see it.

My mom has been battling Sjogrens for years. It was going on a long time, perhaps even in her early adulthood but diagnosis only occurred a few years ago in her 70s.

The dry mouth has caused her teeth to crumble, even with perfect hygiene practices. Two have broken off and her dentist says they need to ALL come out!! And he wants to take the whole top row off at the same time. And leave the bottom ones for later.

I am SO concerned about this...

Can Sjogrens patients even wear dentures if they have the "worst case scenario" no saliva to lubricate the dentures?

She has a hard time healing anyway, and has lost SO much weight being unable to eat and function well. She is also on prednisone, and I read that impedes healing too.

To make it even more questionable, she has Trigeminal Nerve pain.

Has anyone ever undergone extraction and had implants or dentures with trigeminal neuralgia?

The rheumatologist doesn't seem to want to communicate with the dentist, and the PCP doesn't seem to communicate anything to the rheumatologist, even after we urge them to. I find myself making phone calls and getting nowhere on the "collaboration" front. It's like they all live in their own bubbles and no one wants to comment on the other's profession. But having oral surgery is so BIG, and interrelated to so many other things, and I'm so unsure about what is going to be the implications of this. I keep wondering if the dentist really knows what he's doing?

Thanks for hearing. any good experience, or any lessons and tips from someone who has gone before -- I'd love to hear!

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Grace, are you also on the TN community? I would suggest posting this discussion in both communities. You may be able to get a good dentist recommendation on TN.

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Thanks dancermom, I'll do that, definitely. thank you!

4

Hi Grace,

I understand your concern, as that is a big undertaking for someone her age, then add the TN and Sjogren’s…

I had all of my remaining upper teeth extracted at once, by my regular dentist, but was in my 40’s, and it was no picnic even then.

I would suggest you search out an oral surgeon, one versed in Sjogrens and get their opinion, as I think they are your best bet for an honest opinion, and would provide the best care should you decide it’s best to go forward with such a procedure.

In the end, I was all the better for having this done. Though I occasionally have neuralgia, I don’t have TN, but have witnessed my SIL suffer this for decades.

Sending my best to you and your mom,

SK

5

SK, thank you so much!! That is a HUGE encouragement. Mom is a fighter, even though she's older now, she amazes me every day. She is so inspiring. I wish someone had done something for her teeth earlier on, or at least some of them to ease the heavy burden of all this now. But we take it from here, and I know I'm going to do my absolute best to fight for her. Oral surgeon sounds like the way to go. Was your neuralgia in your jaw and was it from the extraction surgery?

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I’ve suffered this forever, sometimes it’s from a/c or a fan, or just cold weather. Even though I haven’t been out, this old house is drafty, especially with these horrendous winds, so that may be it. I’ve been wearing a hat, even to sleep in! My husband’s been teasing me, but I just laugh along!

I have exposed nerves and deep pockets with my remaining teeth, so it doesn’t take much to make them ache.

Sometimes it’s in my back, sometimes in my head. Having it in my head, before the mass extractions has taken me to the ER, and to the oral surgeon with no good answers.

I have it on the right side of my head, neck, and mouth right now, and it doesn’t seem to be caused by my teeth, but the ones on the right side on the bottom really ache, even with taking the NSAID Daypro 600 mg and Lyrica 225 mg.

I have morphine for my back, but only take it when the pain is bad enough to possibly take me to the ER. I’m so glad I don’t have to rely on them for pain relief. I’m very careful, as I’m still Leary of it, but it did help with this last night. It actually helped with everything!

I’m glad that your mom is still as strong as she is. Hope she realizes how lucky she is to have you!

My mom has lived with us for several years now, is 82. She broke a hip about a year ago and though I thought the autoimmune had skipped her, I think that trauma actually kicked it up. All of the sudden she became more gnarled and knotted, but all in all, she’s still in much better health than I am.

Hope you get her to a top notch oral surgeon and he has all the right answers.

Wishing you both well,

SK

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OH wow, I'm so sorry! Her pain comes on the right side too, mostly stays in the face but extends to the back of the head. I think her teeth hurt probably b/c of the damage from sjogrens. She says a lot of things trigger TN too, but she's started taking tylenol at certain times, along with the tegretol to keep that TN quiet.

We're hoping we can join forces too, and live together. :) I actually have an autoimmune disease too. Got it when I was 18, but it's a vasculitis, a lot different than Sjogrens. Thank you for your well wishes. I'm glad this forum is here.I got on the TN community like dancermom suggested and have been getting some good advice regarding extractions there too.