Trigeminal Neuralgia and root canal treatment - can anyone help?

[MAT51]

I have been under a very top nhs oral consultant for about 18 months now. She was the person who ordered my lip biopsy and explained that the results were 100% definitive of Sjögren's. When I see her now it's for TMJ and neuro symptoms around my mouth and face. This she describes as arthralgia and myofascial pain.

This symptomology includes a degree of numbness which hospitalised me twice in 2015 as possible TIA/ Stroke or GCA. When it was shown to be neither the doctors shrugged and it took on the "functional" heading given by my neurologist at the time. It started on my left side but now affects every part of my face so I feel I'm wearing an ill fitting mask.

Since then I've been rediagnosed with Sjögren's instead of seronegative RA and with this has come the implication that, along with my very widespread SFN - some damage has occurred and the facial numbness, burning lips and gums, rancid taste, smell issues and sensation of pressure underlying my upper lips and nostril are all myofascial pain - Fibromyalgia (skewed pain threshold) are all just benign relating to my fatigue.

I've expediated my annual neurology appointment to next month due to dizziness and pins and needles in both arms and twitches all around my face. I saw a Sjögren's specialist privately who told me she thought i have Trigeminal Neuralgia which is common in the neuro version of Sjögren's. Unfortunately she forgot to note this in her clinical letter so my GP dismissed this and said it's more likely to be fatigue/ Fibromyalgia related but no rheumatologist or Neurologist has diagnosed my SFN or numbness as Fibro so I don't accept this.

However today I saw my dentist for a routine check up and he asked me if I'm getting any pain under a crown which dates back to a seriously bad abscess (through my jawbone and almost out the other side!) under one of my molars - following root canal treatment I had done when I was about 18. I'm now 54 so this is showing signs of needing redone now - he's a bit concerned that the risk of another abscess there is growing and I do have some tenderness and blasts of pain when I chew or touch anything cold on that side.

When I told him about the Sjögren's expert saying Trigeminal Neuralgia he said this tarried entirely with the location of the affected tooth, which sits exactly where the Trigeminal Nerve passes. He wants me to discuss this with my oral consultant when I see her in mid December.

So here's my question - how likely is it that the facial problems I suffer 24/7 are connected to this abscess damage and are there alternatives to getting a root canal redone? And, given that my SFN is very widespread - how likely is it that this cavity has been causing ongoing Trigeminal problems - or are they more likely to be systemic as part of my Sjögren's? My teeth have actually been pretty good for about 7 years now but for the first four and half decades of my life, were a disaster. My dentist during my younger days - once told me he thought there was something underlying my relentless dental problems because I never ate sweets and my mum was always meticulous about my dental hygiene.

Treatments were often fairly primitive when I was a child and consequently I've developed dental phobia so this has all come as very unwelcome news! I see my neurologist next month and want to try
and work out what sits more in her camp or more with my oral consultant.

[irish]

I hope I got this right. My idea related to my expenience with terrible teeth and root canals, is that it would be wise to get that tooth pulled and not replace it for a while. Let the body try to tell you what is going on. If you do the root canal you could increase your agony. Pull the tooth and let things heal and see if the trigeminal decreases. You will have time to think about this. May want to not replace the tooth. May want to get a bridge. Ask the dentist about this. I had one for several years. Cheap and do the j0b.

Just to let you know, I had my last good dentist who pulled my 4 front bottom teeth and left them out for about 9 months. This let some things heal up and decrease some symptoms so that dentist could assess better what was going on. I would grin and look funny as heck and just tell my patients that I was in the midst of long term dental issues. We have to just lose our pride and go with the flow with our teeth. Smile and joke about it as nobody really is very concerned about how other people look. It is wise to not rush into things with teeth as things can change and so many other health problems have symptoms that can mimic or overlap. Good luck. Irish

[MAT51]

Yes I think you have got it right Irish. I was thinking the same. It's a molar on left u dear a crown. It would feel odd not to have it but not seriously visible. I guess it's a pretty important tooth few chewing though ans it may not be that easy to do without as it's so close to the trigeminal nerve. I certainly wouldn't hold onto it for cosmetic reasons though.

[jazzlover]

My opinion:

Pull it.

Root canals are a danger unless done expertly. Even then, they are capable of harboring infections that can do undetected for years and years. Do your homework on this one.

[MAT51]

I'm not sure it's going to be as simple as pulling it you know. I had this root canal done on 3rd molar about 38 years ago when I was 18 and an abscess formed under it that penetrated my jaw bone. It crosses the trigeminal nerve so it may be that extraction is not a good option as could cause further problems. I trust my oral consultant she's very good and diagnosed my Sjögren's. But I'm not sure if I should try to see her sooner than six weeks in case it turns into a full blown abscess again?

[Nomad]

Ya know, I developed Sj Syndrome and Atypical TN around the same time. However, my atypical trugemibal neuralgia came after bad dental work. I followed that up with a root canal that made things worse. I pulled the tooth but it was too late.
My pain was over the top.
I would hesitate to do the Rc esp if you already have nerve issues.
Maybe you can pull the tooth and take or increase medication related to TN during this period of time
Hang in there! These things are difficult.

[irish]

I would ask for a referral to an oral surgeon. This is a really tricky thing going on as it can influence more than pain, it can influence disability and your life if infection is kicked up and spread. You may need this whole area cleaned out and redone after all these years. Good luck. Irish''

Also, second opinon is always needed at times like these. Infection ion the facial tissues can spread really fast into the blood stream and brain. Thus the extra caution.

[MAT51]

Thanks Irish. I have to say I have very little pain and x-ray showed no infection yet. But my dentist did say that one of the root canals has a pocket at the tip where the root filling has become very thin/ non existent.

My oral consultant at the hospital is top notch so I'm sure she will know and my dentist is writing to her about this. I'm thinking that I'll know if pain starts that it's time to act immediately.

I do take on board all that you warn of - particularly because I'm immunesuppressed. But presently it's numbness, tingle and twitching all around my face that I deal with 24/7. I have had this symptom for a few years now - was hospitalised with it when it started.

So I'm wondering whether my facial weirdness might have been caused by this old abscess cavity and root canal being  so close to my trigeminal nerve. Or whether this is more likely to relate to the SFN I suffer from all over my body?

[Judie P]

I am so glad that someone has brought this subject up.  On Monday, I just had two teeth extracted, a very large cavity removed and a very deep cleaning in the whole upper right side of my mouth.  They have put in a temporary bridge of two teeth, which will become permanent in about six weeks, I hope.

The whole thing started when I had an abscess and a cavity under the crown of one of the teeth.  Antibiotics was not making the abscess go away.  My dentist stated he knew all about Sjogren's, so I originally went to him.  Everytime my appointment came up, I would be cancelled, like an hour before.  So I finally went to another place this past Monday.  I brought all this paperwork about dental and Sjogren's, yet he still did not need it because he KNEW all about it.  He was soooooo good with me.  Even gave me free bottles of Biotene and more antibiotics.

I have had a problem with numbness for years before I was diagnosed with Primary Sjogrens.  I did have root canals done many years ago on that side of my face.  Cavities run ramped with us, as you know, so abscesses can be normal.

I guess what I am saying is you seem to have experts to help you.  The problem is it takes us more time to heal, but you have the experts to help you.  Now, as far as the anxiety and depression of losing teeth, I have been there and I am still there.  So thank you, Irish, for your response.  It helped me today.  I see clients all the time and sometimes feel like a homeless person.  Thank you Irish.  Good luck