From the Doctors

Trigeminal Neuralgia, the Dentist, and Kids: Best Practices

/ Meg / Leave a comment

I am embarrassed to say how long we went with our daughter NOT going to the dentist once TN set in.  She had been to the dentist only 3 weeks prior to her first attack, which was one of the things that helped us rule out dental problems from nearly Day 1.  Clear, healthy x-rays had just been taken on a child who had never had a cavity, so our dentist told us she didn’t know what was going on with our girl, but she knew it wasn’t dental.

Mugging for Mom after her first dental appointment in over 2 years.

As anyone with TN or Facial Pain will tell you, the mouth and teeth can be a terrible trigger for the pain.  The idea of brushing teeth became filled with trepidation and tears, and going to the dentist was simply too much for us to think about.  I’m not saying we were right in that.  Not at all.  But that’s where we were.

We didn’t return to the dentist for 2 years.  I know, I KNOW this was not good.  I also know, we are not at all alone in this.

Complete avoidance is not a healthy or realistic strategy, long term, for our kids. However, we do need to approach dental work differently than the average dental patient.  So, this past weekend when seven of us TN Mamas attended the national FPA conference, three of us sought out Dr. Donald Nixdorf, DDS, Associate Professor at the University of Minnesota in the Division of TMD & Orofacial Pain, Adjunct and Assistant Professor in the Department of Neurology, and a member of the TNA Medical Advisory Board (wow, that’s a mouthful).

Trigeminal Neuralgia and the Dentist: Ask the Expert

We asked a fairly straight-forward question: How do we best approach dental appointments for our TNKids, to make it the best possible experience.  Following is an outline of Dr. Nixdorf’s response to our lunchtime question.  On our Resource Documents Page is also an article, Ways to Help Reduce Pain Associated with Dental Treatment, that he wrote with Thiago Nascimento for the Facial Pain Association outlining these recommendations.  This will give you something a little more authoritative than our blog posting to print and take to your dentist!

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Trigeminal Neuralgia and the Dentist: Best Practices

1. Before the Appointment:

  • Minimize Anxiety and Stress beforehand – anxiety and stress heighten our sensitivity to pain, so just doing some talking about what you are doing to minimize any problems may help your child. Also (my words) giving them some control and input over how this happens and how to keep their anxiety low is good.  We’ve taken a favorite stuffed animal, pillow and blanket to doctor appointments with no shame.
  • While we do not want to put our kids on high levels of their meds unnecessarily, it may be helpful to do a higher than usual dosage for a period of time prior to a planned procedure so you are starting from a point of well-controlled pain.  Discuss this with your doctor to work out dosage and time period.
  • Work with your dentist to schedule procedures at times of well-controlled pain.
  • Ask: Does this work really need to be done? We are not suggesting that you accuse your dentist of trying to do unneeded procedures here.  What we are suggesting is that while this procedure may be the best course of treatment for a normal patient, something less invasive and traumatizing to the nerve and tissue may be a perfectly fine substitute, and actually better for your child given his/her pain struggles. Don’t be afraid to ask your dentist to take that into consideration.
  • Do pre-emptive pain reduction including a local anesthetic such as topical lidocaine. Don’t be afraid to be generous with this stuff, you can even swallow a LOT of it (I believe his phrasing was ‘buckets’) without adverse reactions – breathing it is not good, and that is the risk, so gel topical is best.

2. Before, During the Procedure, and Through Healing

  • Anti-inflammatories such as NSAIDs (e.g. Ibuprofen) may be taken with your doctor’s supervision to keep down inflammation, which can be a trigger for facial pain. These should be started **at least a day before** the procedure in order to be effective in the system for the procedure. These should be taken at the anti-inflammatory dosage (not pain relief dosage), which for an adult is 3x200MG, 4x/day for Ibuprofen – ASK YOUR DOCTOR for the pediatric dosage for your child. These NSAIDs should be continued through the day of the procedure and the full healing period! For example, for a simple filling this may be about 5 days after the procedure, for something like a root canal you are talking more like 7-10 days after. IMPORTANT NOTE: anti-inflammatories inhibit bone healing, so if you are doing something that will require bone healing, talk to the doctor.
  • Long Acting Opiods – I know, we all worry, a lot, about opioids for our kids, Me too.  But when used properly, and for dental work ONLY for a short period of time from just before (to be effective in the system), day of procedure, through the healing period, it is exactly what they are good for.  This should be done under the supervision of the doctor, and ONLY for the period just before the procedure through the healing of the procedure to prevent the inflammation and irritation of the nerve.  The idea is to reduce dental procedure-related pain because this pain is thought to worsen the TN pain.  Therefore, used properly they can really help.

3. Consider Conscious Sedation

**along with pain prevention and anti-inflammatory** to reduce anxiety.  Nitrous oxide gas is great for this because it has good anxiety reducing properties, mild pain relieving properties, and it can be titrated, meaning turned on and off.

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Kids with Trigeminal Neuralgia: Braces?

I had to ask this since our dentist is always encouraging us to take KatieRose to the orthodontist for a consult and I am SOOO hesitant.  I know at least one of our TNKids had to have braces removed in the Emergency Room during very bad pain flare that led to an MRI.

So, from that discussion, comes this:

First, if you child’s pain is not diagnosed and well-controlled, his short answer was “DON’T DO IT” You have too many unknowns and pain issues already, and getting braces will not make any of it better.  Your first order of business is to make sure you have a firm diagnosis and your child’s facial pain managed.

Second, if your child’s pain is diagnosed and well-controlled, then he still is very hesitant to proceed with braces in a child with TN.  His belief is that there is a very high incidence of braces being cosmetic, and cosmetic is not worth the irritation to the nerve and possible complications.

My own note on braces:

At this point we were being ushered out of lunch by those who run the schedule so we couldn’t continue. However, my 2 cents (not from Dr. Nixdorf) as a final thought on braces is if you and your child really want to or need to proceed with some sort of braces, consider a removable retainer or something such as Invisalign. Then if your child has a flare, or needs to have something done medically, you will be able to just remove it temporarily.

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I have done my best to honestly represent Dr. Nixdorf’s input here, and I hope it is helpful to you all.

Pediatric TN Issues: Four Key Points

/ Meg / 1 Comment

As we have mentioned, this site is administered by four TN Mamas:  Tracy, Meg, Stacie & Ang.  We all came together because we all have kids with this awful condition.  Different pairs of us met just from having kids with TN, but the four of us really came together and bonded and found this purpose because all four of us made it to the same neurosurgeon.  Because of that, the four of us now have kids who are currently TN pain free and medication free.

We don’t want to make this site all about him, and while he knows about the site and ‘follows’ us (Hi!), he doesn’t want it to be about him either.  We all realize that Facial Pain conditions are complex, and that MVD isn’t the end-all be-all answer for everyone.  We also realize there are other neurosurgeons out there.

However, Dr. Mark Linksey, while not a ‘pediatric’ neurosurgeon, has done wonderful things for our kids and many others struggling with TN.   Since first working with TN patients during his residency under the creator of the MVD, Dr. Peter Jeanetta, he has continued to study TN, and is extremely knowledgeable about it and other facial pain conditions.  He is also a member of TNA – The Facial Pain Associatrion Medical Advisory Board.

So, following is a piece written by Dr. Linskey about what he feels are the four key points that need to be ‘out there’ and discussed for pediatric TN patients.

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1)      Traditional US Medical Healthcare training, structure and Culture

In the US Adult Neurologists go through four years (48 months) of training in a neurology residency right out of medical school. However, “pediatric neurologists” do not do a neurology residency.  They do a 3 year general pediatrics residency followed by a 1-2 year “pediatric neurology” fellowship which usually only includes 3-6 months of adult neurology exposure and training, and in some programs includes none at all.  Since less than 1% of TN occurs in patients under the age of 18, most pediatric neurologists do not see a case of TN in their career.

Furthermore there is an assumption inherent in patient referral patterns that children are better cared for by “Pediatric Neurosurgeons” than adult neurosurgeons.  Most pediatric neurologists preferentially refer surgical patients to “pediatric neurosurgeons” despite the fact that even if they were trained in TN surgeries like MVD during their residency (all neurosurgeons go through similar  7 year residency training), given the rarity of the syndrome in pediatric patients, their ongoing surgical experience in TN surgeries may be minimal to none.

What is needed is referral to a neurosurgeon trained and experienced in TN surgery who is comfortable operating on children (whether they are predominantly an adult neurosurgeon, or one of the extremely rare pediatric neurosurgeons who operates on adults with this condition)

Patients and their parents get trapped within this system.

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2)      The problem of out-of-state subspecialty referral for rare or “orphan” pediatric diseases under State Medicaid and perhaps now even under Affordable Care Act individual State Exchange insurance policies as well –

If patients have good primary third party insurance, referral out of state to a neurosurgical TN subspecialist is usually not a problem. However, according to the CMS (Center for Medicare and Medicaid Services) 2012 annual report, in 2011 43.5 million of the 73.9 million children age 0-17 in the US received their healthcare services through Medicaid.  This is 59% of all children in the US. These children represent 50% of all patients enrolled in Medicaid across the US (the rest are adults either under a poverty line or permanently disabled).

Unlike Medicare which is federal and is portable state-to-state, Medicaid is individually run by each state and there are significant barriers to approving care outside of the state, as well as barriers to out-of-state hospitals accepting another state’s Medicaid reimbursement rate. This problem appears to also be developing for health insurance plans being offered and sold on individual state health insurance exchanges under the new Affordable Care Act (ACA).

Depending on the size and location of the state in question, there may, or may not, be a very experienced TN subspecialty neurosurgeon who is comfortable operating on children in their own state.  These barriers to out-of-stet referrals then can become significant barriers to access and quality of care.

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3)      The unique problem of high-dose anti-epileptic drug use in children as opposed to adults (this is not “benign” treatment”) as well as TN in children –

TN patients are initially treated with one, or more anti-epileptic drugs (AEDs).  The doses of these AEDs needed in TN is usually orders of magnitude higher than doses usually used to successfully treat epilepsy. Unfortunately these drugs are not selective.  They have general electrical suppressive effects throughout the brain.  In children the brain is still developing and the effect of these drugs at these doses are potentially much more severe than in their adult counterparts.

These drugs at TN doses interfere with learning and memory during the key learning period in life. This interferes with their grades and impairs their competitiveness for higher educational and career opportunities.  They are general suppressants and they interfere with successful peer socialization and interaction at a time when adolescents are developing their social self confidence, and a feel for their place in society.  If the child is young enough, the may even be erroneously diagnosed with ADHD (Attention Deficit Hyperactivity Disorder).

Even the syndrome of TN by itself is potentially devastating for adolescents from a socialization perspective, particularly in adolescents.  Imagine being afraid to have someone touch your face or kiss you if you are an adolescent (especially girls) and the effect that would have on you socially at this vulnerable time. Many even withdraw and become almost social recluses.

Getting them off these meds and pain-free and allowing them to learn, compete, professionally track, socialize and gain personal self-confidence is a crucial need.

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4)      The importance of finding the right surgeon – In my opinion the TN subspecialty surgeon needs to be very well trained and experienced.  For MVD surgery this very specifically means that the surgeon in question:

A)     Has been trained by a well-known and established master in the technique (not picked it up on their own or trained by someone who is not a known MVD expert)

B)      Has overcome their personal learning curve for the procedure which for MVD, in my opinion, is at least 50 cases.

C)      Has an ongoing regular surgical volume to maintain outcome excellence and keep complication rates as low as possible (studies suggest 6-24 MVD’s per year)

D)     Only operates with experienced intra-operative ABR (auditory brainstem evoked response) monitoring to minimize hearing loss risk

E)      Works with an intact experienced team including neuroanesthesia, neurotechnicians experienced with shredded Teflon felt and microsurgery, a dedicated neuro-ICU and neuro nurses

F)      Ideally is analyzing and publishing their own surgical results in the peer-reviewed literature for comparative purposes

That last point, I (Meg) need to emphasize, and I believe the other TN Mamas will agree.  Two of us (Ang & Meg) came to Dr. Linskey for re-dos after our child’s first MVD failed.  MVD, to someone who is an experienced neurosurgeon, is not a super complex surgery, but it is delicate and ‘elegant’.  There is also important information, like the possible location of compressions, that is not widely known by those who do not practice this surgery regularly.  And MVD is something you want to get right the first time.

Stacie has also developed a more in depth questionnaire that she used for neurosurgeons here.

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I hope you all find this helpful.  These are points that have to become part of the discussion for pediatric – and for most of the points all – TN patients.