School and Trigeminal Neuralgia

I received my official TN diagnosis in the summer of seventh grade. I had already been dealing with what was assumed to be migraines since I was eight years old, though we later learned that those pains were actually TN. Still, my first big attack that got me my official diagnosis started in July, and it took until the end of the month for the doctors to figure things out and to start me on an anti-seizure medication. It was not until September that I learned how the medications and new pain would affect me in school.

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School and Trigeminal Neuralgia Medications

I won’t sugarcoat it. It was hard. I took my medications at night at that time, so that I would sleep through as many of the side effects as possible. While well-intentioned, the plan did not work as well as the doctors had hoped. The side effects would linger through the day, making me extremely drowsy through my school day. It would not be until seven or eight at night that my brain would truly wake up. It was then that I could get my homework done. What would take me three hours to complete at 4pm would take me a half hour in the evening!

This started a vicious cycle though, with me often taking naps when I got home from school, getting homework done late at night, and not getting a full night’s rest. The thing is, it didn’t matter if I got 2 hours of sleep or 12 hours of sleep – if I was within a certain time frame after taking my medications, I was exhausted, dizzy, and had difficulty thinking clearly.

This combo makes school very difficult! Classes that were once easy for me became a struggle. It was common for me to fall asleep in class, despite my best efforts to focus on the lesson. It was involuntary at times!

Trigeminal Neuralgia and School
Don’t let Trigeminal Neuralgia hold you back.

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Understand the Side Effects

Back in 2008, TN advocacy was not what it is today, especially for young patients. Until I was older, my parents blamed much of my newfound exhaustion on being a teenager, not realizing how strong the medications were that I was taking. They did not realize that accommodations could be made for me in school, like being given more time on tests or when taking my SATs. They knew I was struggling, but thought it was something that I’d just have to learn to deal with.

My parents are divorced, and my mom would drop me off at my dad’s house every morning before school. Since my dad did not see me as often as my mom, I don’t think he fully realized how drugged out I felt in the mornings. He assumed my newfound exhaustion was because I stayed up too late at night. I’m sure staying up to finish homework did not help, but it was my only window of thinking somewhat clearly. I treasured that time.

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School with Trigeminal Neuralgia: Best Practices

There were some things that helped me make it through school between the pain and side effects of the medications. There are some adjustments that I made that helped me to get through school.

Talk with your teachers

I learned that teachers were more likely to be understanding and make exceptions if I was the one who explained my condition to them, rather than my mom. In hindsight, I should have had a 504-plan set up, which would have made things easier. But since I did not, every year I would email my teachers with an explanation of what TN is, how it might affect me, and links to websites that contained information about TN. When I became older and created a blog, I wrote a generic letter that I now send out to my professors, which saves me (and them) a lot of time, and I have noticed that they actually read it because it is short and quickly gets my point across.

Maybe a handwritten letter that you copy each year and hand to your teachers will work best for you. Maybe setting up a time to meet with your teachers with a parent with you is what will suit you best. And by all means parents, know what accommodations may be available to your child! But TN kids – being a self-advocate means that you get to tell your story the way YOU want it to be heard. You know your needs, and you know what you want people to understand. It is hard to speak up for yourself, but it has also helped me in so many different areas of my life!

Plan your most difficult classes around your medication schedule

The beginning of my twelfth-grade year, I had calculus first thing in the morning. As I have mentioned above, this was not a good time for me. At this point, I was taking medication at night and in the morning. It was my most sleepy time of day. My teacher didn’t understand and was frustrated that I was falling asleep in her class. She thought I didn’t care. If only she realized that I was way more frustrated than she was! At the end of the first quarter, she walked around the class and showed us our grades. I got a C-. I had never scored that low before. She told me, “If you just stayed awake in class, you would do well.” I was embarrassed, frustrated, and ashamed. I remember my cheeks burning and wanting to cry, not because of the low grade, but because she made me feel guilty for something I couldn’t control.

That day, I talked to my mom about switching my math class and study hall. Originally, I had study hall at the end of the day. Since seniors were allowed to leave school early, I could leave the school after my eight-period class. However, doing well in school was a much bigger priority! We switched around my schedule, moving study hall to the morning (where I could catch some extra sleep or go into school late without missing anything), and math to the last period of the day.

Guess what? The next quarter, my grade moved to a B! And as the year progressed, my grades only got higher and higher. Was I ever an A student in math? Absolutely not! But I did so much better! Having the flexibility to change around my schedule was so important my senior year. In my early high school years, I was in a small private school that did not have this flexibility. Since everyone in the grade needed to take the same courses, I was not able to adjust my schedule. This is something to consider if you are thinking about moving to a smaller school.

Find a safe space in school

Whether it is the nurse’s office, a classroom with a supportive teacher, or the counseling office, make sure you have a place you can go where you feel understood, safe, and free to decompress. I always found this space by getting to know my teachers and sharing my story. My safe space was the library. I knew that if I was having a bad day, I could find comfort in that quiet room. I could hide in the corner and not worry about wearing the “happy mask” that I wore around school all day, when the “pain mast” was hidden underneath.

Ellie performing.  Trigeminal Neuralgia and School
Doing what she loves – performing!

Confide in a friend

I was always very secretive about my TN, until I met a friend who had a difficult medical struggle. He had attended the other high school in our district and was bullied because he had Tourette’s syndrome. His symptoms were very severe, so much so that he had a brain surgery that was experimental for his condition, and therefore wasn’t covered by insurance. The community helped to raise funds to help pay for the surgery, and he was even featured on Good Morning America because the surgery was successful! I was part of the community service club at my school, who raised funds to donate to his surgery. He ended up coming to our high school for his senior year, and we had a little celebration meet-and-greet at the beginning of the year, where we became friends.

When I was out of school for days and weeks at a time, he was the only friend I was completely open with. I told my other friends that I had “jaw pain,” but he could say (and spell) trigeminal neuralgia. When I told him about my meds, he understood the side effects because he lived them. We would joke that we were always told at school to “say no to drugs,” but both of our medicine cabinets were full of them! When he had a seizure at school one day, I remember texting him all night, reassuring him that the bullying that had happened in his last school would not happen at this one. When I would miss school, he would send me daily texts letting me know what I missed and cheering me up.

I know that I was lucky to have found a friend who really, truly understood. But looking back, I should have been more open with all of my friends. I should have told them ways that they could be there for me. I wouldn’t have had to hide my pain or sneak my medications because I was embarrassed and didn’t want to go into the details. Not every friend is going to be great. Some people just don’t know how to be there for you in a difficult situation. But there are some that can and will. You just have to give them the chance.

Join a club

This may not be an option for everyone, but knowing that I could help out in drama club or volunteer with “Interact” on the weekends gave me something to look forward to when school was a struggle. It is also where I made some great friends. Doing theatre was hard, because when I would miss school, rehearsals would still continue. I remember my mom sneaking me in through a side door, since you weren’t supposed to go to afterschool activities if you didn’t make it to school (my mom is totally cool, and realized that my circumstances were not the same as kids just trying to get out of class). Find something that interests you and go for it!

Never be embarrassed to go for extra help

I went to extra help whenever it was available and I was well enough to go. Was it fun? No. But it did more than helping me prepare for a test. It showed my teachers that I cared, and when it came time for grading, and even leniency for homework assignments, they excused a lot because they knew that I was truly giving it my best effort. Extra help also gives you the opportunity to have a conversation about your learning. The teacher will explain a topic in four different ways, instead of the two she will explain in class. If you’re meeting with a tutor, that person will break things down into steps you can understand and remember. Never be afraid to go to extra help – it will only help you in the end.

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Ellie graduating Summa Cum Laude.  Trigeminal Neuralgia and School.
Graduation Day

The Good Side of Trigeminal Neuralgia?

Being a TN kid is not easy. Everyone has to work hard in school to do well, and TN kids have to work even harder. But there is a good side. I’m not kidding!

It made me a hard worker

My brothers had an easy time in high school, and I struggled. When we went to college, my brothers couldn’t slide by like in high school. I was already used to working hard, so the transition to college was much easier! And guess what? I graduated college with a 3.94 GPA! You can go to college with TN and do well! In fact, I think that having TN made me a better student in college.

You will have an amazing college application essay

Your experience is so unique, and it will be sure to help you stand out in the crowd of college hopefuls.

You can speak up for yourself

When my friends all struggled to speak up for themselves in college, I had no problems because I had experienced it in middle school in high school. The nice thing was, as I was learning those skills, I had my parents to guide me, which made the situations easier. My friends did not have this luxury. Be proud that you can speak up for yourself!

You can apply to a wide range of scholarships

Form scholarships about chronic pain to those about overcoming a challenge, it is not difficult to find a way to relate your TN experience to a scholarship prompt. Apply away! You never know what you may receive!

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So, fellow TN kid, as someone who has gone through it and has come out the other side, I am here to tell you that you CAN do this! You only get to be a kid once, so do your best to enjoy as much as you can. Remember that everyone is dealing with something difficult in their lives, and while TN is so difficult to deal with, everyone is struggling for one reason or another to get through school. Just do the best you can and remember that you are not in this alone. I’m rooting for you, and so are the other TN kids, and TN kid-turned adults! You got this!

❤ Ellie

Surgery From the Kid’s Point of View

KatieRose has had two Microvascular Decompression (brain) surgeries, one just a few days after her twelfth birthday, and a second two months after her 13th birthday  (additional compressions not found in by first neurosurgeon).  For a recent writing assignment, she had to write an essay about something that has happened to her, and chose to write about the first surgery.

Living through a terrifying yet a great life-changing experience can make someone stronger, and that’s what happened to me. I remember the night before the scary, stressful experience. My mom and dad took my sister and me out to Ruth’s Chris Steak House in Baltimore, Maryland. It was a beautiful restaurant, and the food was a steamy, delicious delight, but I wasn’t thinking anything of it. I can’t remember if I’d really eaten anything either, I was too deep in thought and as nervous as a mouse to notice. All that night my stomach felt as if there was a pool of thick liquid and feathers mixing around.

Soon we arrived back at our room in a house for sick children. My mom and dad used the two twin beds, and my sister and I used blown-up mattresses. Lying in bed, I was tossing and turning in nervousness. I did soon fall asleep, but it seemed in a blink of an eye I was waking up again. It was still very dark outside, around five-thirty in the morning. Tiredly and groggily, I got ready to leave, my mom gave me a glass of water and a few pills and told me that was the most water I was allowed to drink for today. My mouth felt foamy, so I drank it with relief.

I can’t remember if we got a taxi, bus or rental car, but we piled into a vehicle and headed for the hospital. When signs passed directing drivers to John’s Hopkins Hospital, I’d close my eyes and try to gulp down my dread and fear. Taking deep, slow breaths helped as well, but every now and then I’d find myself fidgeting and shifting uncontrollably. I could hardly believe I was driving straight to brain surgery a few days after my twelfth birthday. Due to my Trigeminal Neuralgia, I was willing to do a lot to stop the invisible knife stabbing me in the face.

Finding myself sitting in the waiting room, I tried to fall asleep. Unfortunately, I’d find myself staring blankly at the floor, ceiling or walls. My dad gave me his laptop so I could play some games. This helped passed both the time and some of my fear—until one of the nurses, who I was surprised was even awake at this hour, called my name. We headed through a door and into the preoperative room where I got changed into a hospital gown and into a bed. Again I played on my dad’s laptop while the nurses put intravenous needles in me. I could feel something like a warm yet chilling ball in the pit of my stomach, probably fear. Later, they wheeled me into the operating room with my dad following me.

One of the nurses gave me a face mask and some sweet smelling chap stick. They told me the gasses would smell bad, but I could rub the inside of the mask with my favorite smell. In the operating room, I lay down on the metal operating table and waiting for them to place the mask on me. My stomach was swimming, yet I felt strangely relaxed. Little did I know they were giving me some sort of medication to make me relaxed. Putting the mask on me, the doctors told me nothing was going through it yet except oxygen. I took the mask off and replied, “Yeah, except the carbon dioxide I’m breathing out.” Once I placed the mask back on blackness followed.

Hearing voices, I was still wondering when they’d turn on the mask. My head was throbbing, and everything sounded muffled. Through a hoarse voice I said something along the lines of, “What happened?”

My mom replied, “It’s over.”

I told her I needed water. My mouth was like a sandy desert. The nurses and doctors said I wasn’t ready to consume anything yet. All of my other emotions were hidden somewhere, I was just very thirsty. After I had gotten ice chips, I was very tired and fell asleep. When I was conscious enough to think, I was very relieved and surprised the microvascular decompression went by so fast and went so well.

I had survived brain surgery.

Trigeminal Neuralgia, the Dentist, and Kids: Best Practices

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

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 MedicaidThis 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.

Pediatric TN Challenges: “Doesn’t Happen In Kids.”

This makes many of us TN parents absolutely insane.  Especially those of us whose children were finally diagnosed correctly and then treated (at least somewhat) successfully.  We know the damage that can be done to our children and families when we keep running up against incorrect diagnoses.

All the literature says that Trigeminal Neuralgia occurs more often in women, but occurs in men also, usually in patients over the age of 50, but can occur at any age.  Even in children.  However in practice, many doctors, including some of the top neurologists and neurosurgeons for Trigeminal Neuralgia, will just say that your child cannot have Trigeminal Neuralgia – because they are children.  One of our TN Mamas was told “I’m not sure what is going on with your child, but it’s not TN, because that doesn’t happen in children.”  Another was told, “If your child has Trigeminal Neuralgia, I’ll eat my belt, because TN doesn’t happen in children.”  (My emphasis added.)  And these docs are at top medical institutions in the country.  And just FYI, both of these children were later diagnosed with TN, and had successful MVDs.

For some doctors it’s just a matter of educating to show that this isn’t true.  Show them this site, show them the Facebook sites “Children with Trigeminal Neuralgia” or “Teens with Trigeminal Neuralgia”.  But for others, it just doesn’t matter.  You can show them children who are text book Trigeminal Neuralgia, and that won’t change their minds.  Show them children who had the pain, were given the anti-seizure meds prescribed for TN, and had their pain stop or suddenly become manageable.  Show them kids who had MVD and have had their pain stop immediately after surgery and not return – and the doctors will still say you cannot have Trigeminal Neuralgia if you are a child.  Because of this, parents will be sent on a wild goose chase of diagnoses that are never quite right, with treatments that do nothing to help.  It also means these doctors eventually conclude nothing can be done for this pain, or it’s just a psychiatric issue, and the child must learn to live with the pain.  Yes, I know it feels like you’re being stabbed in the face with a carving knife non-stop for hours.  I’m sorry, you’ll just have to learn coping skills.

If you have a doctor telling you your child doesn’t, or “can’t” have Trigeminal Neuralgia – maybe they are right.  (Stay with me for a moment…)  There are many facial pain conditions.  If you are new to this journey and/or your child’s symptoms are not quite lining up with Trigeminal Neuralgia, it’s possible you are dealing with something else.  It is important to not get too attached to the “TN” label, or any other label for that matter if it is not quite right, because the treatment will never fully work if the diagnosis is wrong.

It is also possible that your child is dealing with a combination of conditions.  It seems many of the kids we deal with have a combination, like our daughter who had Trigeminal and Geniculate Neuralgia (GN).  Classic (type 1) Trigeminal Neuralgia is caused by compressions on the Trigminal Nerve, while  her Geniculate Neuralgia was caused by compressions on the 7th and 9th cranial nerves. Another of our kids had compressions on cranial nerves 5 through 10 – what a mess!  If you child’s anatomy leans toward having complicated vascular structures, it is easy to see how they could have both TN and GN, or other cranial neuralgias caused by compressions.  However, some doctors will realize some of the symptoms your child is suffering from are not from TN, and just stop there, insisting they therefore do not have Trigeminal Neuralgia.  The doctor will not consider the possibility of a combination of these conditions.

If you believe your child may have Trigeminal Neuralgia, but a medical professional is insisting s/he does not, ask what of your child’s symptoms are indicating a diagnosis besides Trigeminal Neuralgia?  And what would their best guess of a diagnosis for those symptoms be?  If they cannot tell you that, or what they tell you does not line up with current TN literature, get a second or third opinion.  At least.

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Some resources you can arm yourself with for these conversations include…

<CLICK HERE> for information from the Facial Pain Association

<CLICK HERE> for John Hopkins Hospitals information on Trigeminal Neuralgia

<CLICK HERE> for National Institutes of Health information on Trigeminal Neuralgia

This PDF:  Differential Diagnosis Orofacial Pain for a very thorough breakdown of different facial pain conditions.  Thank you Dr. Hegarty & Dr. Zakrzewska!  Sorry for small type, many pages, and big words (honestly, don’t try to read this at 1:00AM) but if you can grab your dictionary and wade through there is some excellent information here.

I would love to include a reliable source of statistics that show the occurrence of TN in children, but honestly, I’ve not yet found any.  (If I do, I’ll edit this!)  There are individual reports of cases of pediatric Trigeminal Neuralgia, and a paper written here and there about a child or a very small sampling, but not much beyond that.  Truth be told, Trigeminal Neuralgia is rare.  And it is said that less than 1% of those diagnosed with Trigeminal Neuralgia are pediatric.  Sadly, I can name over 20+ kids easily because of the work we 4 TNMamas are doing.  But there’s not much literature out there for us.  Yet.

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An accurate diagnosis is crucial for successful treatment, so be open to new information.  However, be sure that the diagnosis you are getting – or ruling out – is being done on the basis of symptoms, not an inaccurate preconception, or dated knowledge.

Wishing you all the best, and pain-free days ahead.

Pediatric TN Challenges: Doctors

I hate to put this challenge so close to the top of our list, but it has to be done.  I know there are some absolutely wonderful doctors out there – with some effort, persistence, and TN Mama networking, we found one we will always be thankful for. Due to the rarity of Trigeminal Neuralgia, many adult patients have a very tough time finding a qualified team of doctors to work with.  Pediatric cases of Trigeminal Neuralgia are < 1% of the diagnosed cases of TN, so you can do the math on how much harder it is for the kids.

Is the very, very, VERY rare pediatric doctor who knows much beyond a quick mention in medical school about Trigeminal Neuralgia.  So, what they know is often restricted to a text book or mention in a lecture.  And who knows how long ago that happened and how dated that information may be.

Let me clarify – I am not saying this to be overly critical of these doctors.  The overwhelming majority of pediatric doctors will never see a case of Trigeminal Neuralgia, so we really can’t have the expectation that they are going to know the most complete and up to date information on symptoms, diagnosis, imaging, and treatment options.

However, there are several areas where this causes real problems:

One, if you have a pediatric doctor that is not working to come up to speed on the current medical information with you.  Some doctors know what they know, will treat based on that, and aren’t going to invest the time to look for other alternatives or better information for you.  Each of us TN Mamas tends to be forced into the position of educating ourselves and coming to the doctor with specific medication questions, options of treatment, etc.  (Which is one reason we started this site!  Check out www.fpa-support.org and www.facingfacialpain.org also.)  If your doctor consistently does not know information you need and isn’t willing to help you find it, or has no interest in research you have done and your questions – find a new doctor.

Two, many of the non-pediatric doctors – who actually know this condition and have experience working with it – just won’t take a pediatric patient on.  This is true for neurosurgery, other specialties, and especially when it comes to neurology.  I’m not sure of the reasons for this, but my guess is it has something to do with medications working differently in pediatric cases than adults, and dosage adjustment concerns.  However, when you are dealing with TN, your neurologist is your partner in keeping your child’s pain managed, which often becomes the center of life.  The frustration level of working with a neuro who isn’t up on the latest medications and medication combinations – which become increasingly important and complicated – is immense.  And it is worse when you know there are doctors who understand this better, but they will not see your child.  While I want a doctor to be honest with me if they do not feel comfortable treating my child, it can be infuriating.

Three, even doctors who have treated a good number of TN patients, may not have treated enough pediatric patients to know about some of the issues specific to them.  Really, finding a medical professional who has treated enough TN patients to be considered somewhat of an expert, and who has treated enough pediatric TN patients to know the issues specific to them is an extremely difficult thing.  They are the magical unicorns of the pediatric TN world.  It is a combination that is nearly impossible to find.

Finally, unfortunately many times now, insurance companies decide whether you can see a certain doctor or not. So, even if you have found a non-pediatric doctor who is willing to take your child on as a patient, and who has treated enough pediatric cases – the approval process with the insurance company just may not come through.  Yes, this makes you want to hit someone, scream until you are blue in the face, and basically throw a temper tantrum until someone listens to you.

Our best advice on this issue, is persistence.  Remember to be someone the doctor you are pursuing would want to work with.  Polite, but firm and persistant.  Tug the heart strings.  Explain your situation. Call.  Call again.  See if you can get an appointment for a consult or a discussion “to learn more about TN” if they are hesitant to take on your child as a patient.  Enlist your pediatrician or whatever doctor will consider it, to write a letter/email or make a call on your behalf.  If it is the insurance company refusing, see if the doctor who is willing to see you and your pediatrician or primary care physician would write letters on your behalf to the insurance company.  Write a letter/email yourself explaining why you want to see a specific doctor and why it is important for your child to have treatment from a medical professional with sufficient knowledge and experience, regardless of the “pediatric” title.  Call whoever says no at the insurance company, and ask (politely but firmly!) who their supervisor is.  Repeat this to the boss.  Never Give Up is the motto of so many of us.

It’s really exhausting, I know.  It seems overwhelming, and sometime, yeah, it is.  When you hit your wall, it’s ok to fall apart, get mad, cry, throw something, nap.  Then get up and keep going.

We’re sorry about this, and we are hoping it starts to change.  But we know you are the best asset your child has right now, and you will leverage that to give them all they need.  You will get there.

Love, Hugs, & Hope, from us to you.

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This photo is of 6 of our TNKids, with our personal favorite team: neurosurgeon Dr. Mark Linskey, and his PA Wendy, of UCI Medical Center.  All 6 kids are post MVD and doing well.

Pediatric TN Challenges: Communication

Having Trigeminal Neuralgia is painful and overwhelming and hard beyond the English language’s ability to describe it.  Someone with TN, in my experience, often does not even try to really communicate the depth of the battle that it is, so I can certainly not explain it sufficiently.

If you child has Trigeminal Neuralgia, they are going through that fight on a daily basis.  On top of that, kids have some unique, and incredibly frustrating challenges when facing this condition that is considered an “Over age 50” affliction.

Here we are going to discuss some of those challenges that need to be taken into consideration, and even expected at some level.  As much as some of them will make you want to scream at someone, or hit something, we need to realize these things happen – and be ready to respond or compensate.

This is the first installment topic, more will follow.

Special Note:  I reserve the right to modify, add to, and update this list going forward.  It seems the longer we think and talk about this topic, the more things pop to mind.

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Communication:

The most immediate and obvious issues will probably be communication.  There is no test or scan that diagnoses Trigeminal Neuralgia, though many – even “top” doctors – will look to the MRI for compressions for diagnosis, MRIs are NOT effective at diagnosing TN.  There are many facial and head pain conditions, so a proper diagnosis depends on an accurate description of the pain and any other symptoms, by a doctor with a large amount of knowledge and experience with Trigeminal Neuralgia.  Depending on the age of your child, this can be anywhere from easily misunderstood to impossible.

Our daughter was 11 years old and highly verbal at the onset of symptoms. (Seriously, when she was very young one of her punishments was “no talking” for a short period of time.  Within a minute she would be moaning in frustration at her lack of expression.)  However, when we made it to the pediatrician, she kept using the word “headache” which threw things off for a short time, giving us a diagnosis of Atypical Migraine.  Once we started keeping a detailed pain journal, and asking her to point to where it hurt, the discussion changed.  But in her defense, she explained, “your face is part of your head, right?”

Very young children may not be verbal enough, or have a sufficient vocabulary to describe what they are feeling beyond the obvious pain.  For the very young it will be important for you to pay careful attention to nonverbal communication. Are they holding a specific spot during pain?  Are they pulling or pressing on a specific spot on their face or head?  Are there things they have stopped doing – like eating, chewing (altogether or on a specific side), drinking cold beverages, brushing teeth.

Older children may still not have the subtle variations in vocabulary to tell you they are feeling “electric shock” pain, or a “boring” pain, subtle differences that are important.  They can answer your questions, so knowing what to ask becomes important.  The 5th neurosurgeon we went to did the absolute best job of this.  He would ask her about an aspect of her pain, letting her describe it.  But then he would also give her options to choose from in describing the location, pain descriptors, any other sensory factors.  Choosing the right word was often much easier than coming up with it out of her head – it’s just important to give a wide enough range of options so they don’t just choose something to give you an answer.  Sometimes these options would also be a starting point for her to say “It’s kind of like that, but it does this, too.”   This is how a good diagnosis happens.

Some pain descriptors you can ask about are:  aching, boring, burning, cutting, dull, electric, freezing, gnawing, inflamed, irritating, numbing, pins and needles, radiating, sharp, shocking, shooting, stabbing, stinging, tender, tight, tingling, throbbing, and vise-like.  This is just a start, feel free to add your own.

Two tools that may help are:

A face front/side image you child can use to specifically point out where pain is located:

Facial Sketch

A photo of the 1-10 pain scale with some descriptors to help understand it:

Facial Pain_Chart Horizontal

It is also good to choose your times to ask about the pain. I would often ask limited questions during the pain when it wasn’t too bad.  As the pain ramps up, there is no sense trying to ask annoying questions.  However, often, an hour or so after the pain stopped, when my girl had rested, she would then be willing and able to answer my questions more thoroughly.  It’s trial and error.  See when it works to talk to your child.  Experiment with different descriptors and see if any of them really connect with your child’s pain.

Your kid may do really well describing what they are going through.  Or they may really struggle. Or, like mine, you may think they are doing great when you are actually missing important pieces.  Know that we all miss things, we all stumble our way along. Especially in the beginning, but even throughout the journey.  It’s ok.  We offer this information to help, not to beat yourself up about – so you are now officially not allowed to do that.

Love, Hugs & Hope, from all of us to you.

Do I Have the Right MRI? What If My MRI Is “Clear”?

So many of us have had the same experience when, after being diagnosed with Trigeminal Neuralgia, we finally get our long awaited MRI back. All that waiting, thinking THIS is finally going to reveal why our child is in excruiciating pain. Only to be told the MRI is “Clear”. There is no compression.

Then, we are so often told, since the MRI does not show a compression, there is no surgical option for our kid’s Trigeminal Neuralgia.

But in discussing this with the neurosurgeon who was finally able to help our daughter, Dr. Mark Linskey, Associate Professor of Neurological Surgery and Director of Neurosugery, Cranial Nerve Clinic, University of California, Irvine, he has a different response. Dr. Linskey told us 100% of people with “the classic syndrome”, TN1, will have the vessel there. Even if it is not seen on the MRI, it will be there.

Why is that so important? Because it means you can treat the CAUSE of the TN, not just the symptom of pain, and as research marches forward MVD remains the best chance for long lasting relief by addressing the primary cause of TN1. 

When your child is diagnosed with a rare, chronic illness, passivity is not a luxury we have.  We can waste time wading through the confusing medical terminology, get bogged down in immediate pain relief scams or spend too much money desperately seeking the slightest hope at relief and all the while our children suffer.  But our kids are better served if we can go straight to the source.  The best source for those suffering from TN are experienced neurologists and neurosurgeons who are well versed in this disease.  They need experience with this disease, and experience is not simply knowing what TN is by learning about it in medical school.  Experience is working with patients, keeping up on research, and knowing all the options and how to choose the best option for each patient.

For most of our kids, treatment will start with a good MRI.  We asked Dr. Linskey, the same neurosurgeon in the video link above what kind of MRI patients need to have.  His answer was specific and direct:  “A volumetric, T2 acquisition with fine secondary slicing, sub-millimeter, either .8 or .5 millimeter.  Depending on the make of the machine, this is sometimes called a CISS or Fiesta, or other nomenclature.”  So make sure when you are getting consults and second or third opinions, you have the right building block, a good MRI.  

Next, you need to have that MRI read by the experienced TN neurologist or neurosurgeon.  You heard it in the video, and I have to say that our widespread experience is that even radiologists– excellent radiologists– are not experienced enough with trigeminal neuralgia to know specifically what to look for.  Yet an experienced neurosurgeon will often times look at that same “clear” or “negative” MRI and immediately see compression.

But now I am back to that one simple fact from Dr. Linskey: “But not showing a blood vessel there doesn’t mean anything.  If you have the classic syndrome you will have the blood vessel there.  The chances of finding it there in my series are at 100%.  In a larger series of Dr. Jannetta’s it’s at 97% and the other 3% if followed over time turned out to be patients in the very early course of their MS and when followed longer were found to have MS later on.”  Not that it wasn’t clear, but it bears repeating that at surgery, even when a patient was shown to have neural imaging clear of compressions, there were vessels compressing the nerve ONE HUNDRED PERCENT OF THE TIME.  That means that the same vessels can be decompressed during surgery.  Specific anatomical anomalies were addressed as well in the video, but the biggest lesson is that there is hope.  For all the times you were told to wait, to give your child another pill, to resign to a life of pain for your child, I am telling you there is hope.  You just have to ask the right questions and keep asking the right people until you get the answer you want.  And there is a growing group of TN Kids who are finding the answer and a pain free life.  Please do not give up!

It’s Not Just Kids Being Kids… Recreational Drug and Alcohol Use

This may be a little jarring to those of you with younger TNKids, but we are in contact with families of kids up to age 20, and not so out of the realm of possibility at all for older teens.  It may also seem inconceivable given how poorly your child is doing and the fact that you are with them all the time.  However, if your child’s pain is managed with medications for periods of time, this may come up.

DISCLAIMER:  First, we are not here to tell you how to parent.  That’s not our place, or the purpose of this site, and we aren’t trying to do so.  By posting this, we are not making a statement either way in regard to allowing or not allowing your child to use alcohol and recreational drugs.  We may or may not have strong feelings on this individually, and as the 4 of us TNMamas together.  HOWEVER, it doesn’t matter one way or the other for the purpose of this post.  Any comments degrading other parents will not be approved for post.

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Especially those of you with older teen TNKids may have kids who have experimented with alcohol and drugs.  This may be with or without your knowledge and/or permission.  If you have a child who is not wrestling with the TN beast, and all the medical issues that come along with that, this leads to family discussions, rules, policies, maybe punishments, whatever.  However, if your child is a TNKid, there are more issues involved that need to be considered, and that is what we are going to discuss here.

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Greater Risks with Recreational Drug & Alcohol Use for TNKids

Drug interactions:

First, you and your child need to understand the very real and extremely serious dangers of combining the medication they are on for Trigeminal Neuralgia with alcohol and recreational drugs.  What seems like an evening of ‘teenage fun’ or ‘rebellion’ can lead to reactions with long term consequences and even death.  Did you read that?  This is NOT something to be messed with.

According to drugs.com here one of the most common TN drugs, Carbemazepine/Tegretol, when combined with alcohol leads to “increase nervous system side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with carbamazepine.”

It says basically the same thing for many, if not all of the medications prescribed for Trigeminal Neuralgia.  Ingesting alcohol while on these medications worsens the side effects of the medications, including:  dizziness, confusion, insomnia, headache, visual disturbance, loss of motor coordination, etc.  This also includes the rare but serious side effects such as: chest pain, difficulty breathing and seizure.

This is true and even more unpredictable with recreational drug use.

According to the National Institutes of Health, as much at 25% of ER visits have drug/alcohol interaction as a contributing factor.  Linked here.

One evening of poor judgment can be very, very bad when combined with these medications.  Talk to your child about this.  Impress on them the seriousness of the consequences of this decision.

Another note:  Depending on what prescription meds your child is taking, these interactions can be true of things as innocuous as cough syrup.  So you need to be considering side effects and interactions with even the simplest of other medications.  We recommend asking your prescribing physician about safe over-the-counter options for any needs you may have.

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Greater Likelihood of Hospital Screening

When your child is wrestling with Trigeminal Neuralgia, the truth is that they will be seeing doctors and having tests, including blood tests, more than the average young person.  Much more.  And it will at times be very unpredictable.

That means that if your child thinks they can sneak one night and no one will know?  The odds are much higher for your child that someone will find out.  If you find yourself in the ER or at the doctor’s office the next day  – or even for some things (such as cannabis) up to 30 days later – they may wind up with a positive drug screen.

This can wind up being a very big mess.

First, pain patients often run into problems with being suspected of being drug seekers.  This can cause them to be turned away from ERs, pain management offices, or doctors who are in fear of feeding an addiction instead of treating a patient.  (Agree with it or not, it happens.)  If your child shows up positive for recreational drugs in their system, or with the morning after evidence of underage drinking and partying last night, this will wave red flags in front of medical professionals.   Some systems have very strict rules about this, and even if they still want to help you, medical professionals will face problems with doing so.  You don’t want to find yourself in a position where hospital systems refuse to give your child the help they need, or delay it substantially.

Second, with repeated visits to the ER with a minor on multiple medications, social services have been called on at least a couple of our families even without any drug or alcohol use.  Because these families were doing nothing wrong and were following proscribed usage of their medications – and nothing else – these situations were resolved as well you could hope for (though it is infuriating and a subject for another post!).  HOWEVER, if you show up in the ER for help and your child is shown to be “self-medicating” this could be an entirely different battle with a much worse outcome.

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Pain Patients have Greater Likelihood of Addiction Struggles

The last thing I’m going to mention is the longer term risks of recreational drug and alcohol use for our fighters.  See one study here.

The sad truth is, as chronic pain patients, our kids have a greater likelihood of struggling with addiction.   When I watched my daughter in the excruciating pain of TN, I could easily see how this could happen.  Who wouldn’t want an escape from that?  But what may just seem like a momentary escape can lead to a long term battle that snowballs the issues listed above.  As parents, we need to be aware of this risk, and fighting this battle for and with them.  We should also be talking to our kids about the long term ramifications of a momentary decision.

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It may seem like ‘no big deal’ or ‘normal teen rebellion’ to many, but for our kids (and even in some ways adults in this battle) it carries a much greater risk.  Talk to your kids.  Talk to them even if – and maybe best if – it can’t possibly be an issue at this point. Teach them about the dangers, risks and consequences they face beyond what most kids face.

Hugs to you families.  Fight on.

The Things I Wish I’d Known When My Child Was Diagnosed With TN, alternatively titled, “Do You Doctors Know ANYTHING?”

I’d say it’s the words we didn’t want to hear, the diagnosis we did not want.  But since none of us had probably ever heard of Trigeminal Neuralgia, your first reaction was likely, “Huh?”

There is a dearth of information out there, especially good information and especially for pediatric patients with TN.  I feel the crux of the article is really best summed up in a catchy title, so here it is…..”Everything You Ever Wanted To Know About TN You Are Learning From A Mom Who Has Been There, Tried That.”

My daughter was 11 when she was diagnosed with Trigeminal Neuralgia.  Seeing her have attacks those first couple days was awful and confusing and I just knew she had a cavity and I may have even chastised her for being dramatic and not brushing well enough.  Our pediatric dentist could find nothing wrong, though.  So we told them to look again.  And when they still couldn’t find anything wrong, we took her to an after hours emergency dentist.  She asked us a few specific questions: ‘describe what happens when she’s in pain’ and ‘does anything in particular set it off’?  She paused, left the room, and came back carrying two pieces of paper.  One said “TRIGEMINAL NEURALGIA” in block letters and the other was a prescription for Vicodin.  She said, “I think this is what your daughter has.  I can’t help her, but God help you if I’m right.”  Which brings me to the

First Thing I Wish I’d Known When My Child Was Diagnosed With TN: dentists are good people and we need them, but trigeminal neuralgia is not a dental problem.  

So we went to the ER.  We had an MRI and mercifully it was clear of any tumor or physical brain anomaly that might be irritating the nerve.  But it was also clear of compressions, and so a few days later when we saw a pediatric neurologist, he declared, “If this kid has Trigeminal Neuralgia, I will eat my belt!”  Which brings me to the

Second Thing I Wish I’d Known When My Child Was Diagnosed With TN: Trigeminal Neuralgia is an adult condition and needs to be treated by an adult neurologist.  Pediatric neurologists do not have the education or experience to treat a disease seldom seen in children. 

Despite his doubts that she really had TN, he started her on Tegretol.  She lasted a week.  She was a zombie and barely functioning.  She was just starting seventh grade and we had no idea how she would get through the days.  We stopped Tegretol, and believing that neurologist, the man with “Dr.” in front of his name, we went back to our dentist.

They were determined to find a cause for this seemingly inexplicable pain.  After much poking, prodding, hot and cold tests, and lengthy questioning, they determined she had suffered “jaw trauma” on the playground in third grade and a recent growth spurt had exacerbated a latent injury.  Huh?  We couldn’t remember any jaw trauma, but these were very wise doctors who clearly knew what was best, so they sent us to a specialist who dealt with jaw alignment and pain relief.  Our daughter was fitted with a MAGO (Maxillary Anterior Guided Orthotic).   Picture a very thick piece of acrylic that snaps on to her teeth and removes any pressure from the jaw joint.  And it cost $3,000, not covered by insurance.  But we were desperate and willing to do anything to keep her out of pain and off those horrible medications.  So here is the

Third Thing I Wish I’d Known When My Child Was Diagnosed With TN: try anything, try everything…but be very cautious of expensive treatments that promise ‘too good to be true’ results. I feel many of us start throwing money at ‘solutions’ or give up hope once we are told there are no visible nerve compressions. 

As time went by, the attacks– those horrible, screaming attacks– became more frequent.  She would stick her finger in her ear and clutch her face and scream in guttural, primal ways I pray I never hear again.  That was the

Fourth Thing I Wish I’d Known When My Child Was Diagnosed With TN: that some of the ear and eye pain associated with TN could be caused by compressions on other cranial nerves.

The first neurologist we saw should have told us that, but instead the MAGO got thicker and activities started dropping away.  No more volleyball.  No more youth group.  Not much socializing.  We had to do something.  I called and begged one adult neurologist after another to see her until finally I found one.  He told us he’d never seen a case so severe and especially in someone so young.  He gently told us that we had to put her on medication if we loved our daughter and wanted her to have relief.  So we started Trileptal.  An initial dosing of 150mg twice a day didn’t do much, so we upped it to 300mg twice a day.  That worked for a while, but within six months it had doubled to 600mg twice a day.  Which brings us to the most painful lesson of all and the

Fifth Thing I Wish I’d Known When My Child Was Diagnosed With TN:  the amount of medication she is taking will sneak up on you. As you fight to control the pain and add more and more medication, you will lose parts of your child.

She was slipping away and we knew it.  Within a year and a half of starting medication she would be on 2100mg of Trileptal and 1200mg of Gabapentin.  TN would not steal my child, though, and I was determined to get her back.

But time marched on and so did TN.  The voices of all those doctors who told us she would ‘likely’ go into remission were ringing in my head.  Where was this remission?  When would it stop?  When could she have one day of total relief? But two years in and I hadn’t learned yet the

Sixth Thing I Wish I’d Known When My Child Was Diagnosed With TN: this disease is progressive and it will get worse. Pain will get more intense, periods of relief less frequent, and outbreaks will last longer…..DESPITE increasingly higher doses of medication.

Once I learned this, I was a mama on a mission.  I “knew” that the best place for medical care was the Mayo Clinic, so we worked with her neurologist to get her in.  They scheduled a week’s worth of tests and repeated most of them twice.  They did new MRIs. She met with a psychologist and learned biofeedback.  We had left our other child at home with relatives to travel 900 miles to finally have answers, and after a week they said the MRI was clear, she had idiopathic trigeminal neuralgia and we should add Gabapentin to her medication regimen.  So we called John’s Hopkins for a second opinion.  They told us the first thing they would start with was a rhizotomy.  We contemplated another extended travel trip across country and started researching balloon versus glycerol rhizotomy.  In the meantime, we made appointments with Upper Cervical Chiropractors and took her to get acupuncture and bought Chinese herbs (refer to the Third Thing I Learned).  It was later that a very wise man taught me the

Seventh Thing I Wish I’d Known When My Child Was Diagnosed With TN:  all treatments other than MVD for TN are palliative–they treat the symptom of pain but do not address the cause of the trigeminal neuralgia.  Medication, rhizotomy, nerve blocks, MAGOs– all of it  are just very expensive Band-Aids. 

Her pain will likely reoccur.

I look back and I wonder how we were getting through those days as our daughter’s TN progressed and as she started wasting away.  She couldn’t eat, she barely slept, but she trudged on.  We really don’t know how.  We were trying desperately to help her and nothing was working and no one had answers.  At least not answers that got my child out of pain.  I was stuck, though, and I needed to learn the most important lesson a caregiver can learn, or the

Eighth Thing I Wish I’d Known When My Child Was Diagnosed With TN: progression of this disease is not a failure on your part or a failure of your child. As time marches on it will get harder to “deal with the pain.”  When medications stop working, it isn’t your fault.

This realization was very freeing for our family.  We decided to live, not just exist, and we decided to resist all the self imposed limitations we had placed on our entire family and embrace life again.  We boarded a plane to California one day in late January 2014 to give our child the opportunity to do something she finally really wanted to do– to do something despite trigeminal neuralgia.  It was so freeing, and it ended up being the greatest decision of our lives.

In all the research we had done, in all our consultations and doctors and tests, we never strayed from the mainstream “best” doctors: Mayo Clinic, Johns Hopkins, top neurologists and neurosurgeons.  We never looked for the best trigeminal neuralgia and MVD surgeons.  So I learned the

Ninth Thing I Wish I’d Known When My Child Was Diagnosed With TN:  all neurosurgeons are not equal. They all LEARN to do MVDs, but it doesn’t mean they SHOULD do MVDs. Doctors have to stay current and be experienced in the procedure.

They need to be able to explain trigeminal neuralgia and its physiology in a way that makes sense to you.  They need to acknowledge and understand the medications and what they are doing to your child and their developing brain. They need to look you in the eye and tell you that it is possible to have your child back.

We found that doctor on that chance trip to California.  We made the appointment and had the Mayo Clinic send all her records.  Those FedEx charges were worth more than all the MAGOs, acupuncture and chiropractic treatments we’d paid for over four years.  It took this MVD specialist, a trigeminal neuralgia neurosurgeon, one glance to tell us he saw one very clear compression where countless others had seen none.  I wept with relief.  There was hope!  She had a compression!  And his startling response was counterintuitive and went against everything we had previously learned but became the

Tenth Thing I Wish I’d Known When My Child Was Diagnosed With TN: just because a compression isn’t visible on MRI, doesn’t mean there isn’t one there.

MRIs are not diagnostic tools; they are only used to rule out other things.  It is estimated that over ninety five percent of type one trigeminal neuralgia patients have a compression.  My daughter’s neurosurgeon has never– I repeat, never– performed an exploratory MVD that was negative for compression.  That means one hundred percent of the cases he has done have had compressions.  Most all of his patients that I have spoken to were told their MRIs were clear of compression and that they did not “need” MVD or that they would not get relief from MVD.  The notion that “clear” MRIs always indicate that your child is not an MVD candidate is wrong and in my opinion borders on malpractice.

So we did it.  We looked this man, another man with “Dr.” in front of his name in the eye and said, “Fix our child.”  Five weeks after we met him, he performed an MVD on our daughter.  The girl with multiple “clear” MRIs read by multiple specialists at top facilities around the United States had seven compressions– four on her Trigeminal Nerve, two on her seventh cranial nerve and one on her ninth cranial nerve (remember the Fourth Thing I Learned and pain that caused her to stick her finger in her ear?)  And as her neurosurgeon closely monitored her progress and her healing I discovered the

Eleventh Thing I Wish I’d Known When My Child Was Diagnosed With TN: once compressions are removed, the nerve can re-myelinate itself, and healing of the nerve is possible, but only if the nerve has not been permanently damaged by previous destructive palliative procedures like nerve blocks, rhizotomies and gamma knife.   

Healing.  It seems like such a simple word, but there was so much to heal.  Our child’s spirit was broken by TN; her psyche was fragile.  Our home had a dark cloud all around because we were fighting something no one else understood.  We were an island of pain.  We were isolated from friends, even family because there is just no way  to accurately describe what you are all going through.  Which is why we are so thankful that we have this small but powerful community rallying for all our kids with TN.  We are all at different points in the TN journey but we share a commonality.  Our children are the bravest of the brave and we are more determined than most.  And we are determined because deep down we know there is something more for our children than a life sentence with Trigeminal Neuralgia.  We know the truth and the

Twelfth Thing I Wish I’d Known When My Child Was Diagnosed With TN: we will never stop searching because an answer, a cure, HOPE is out there.  

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