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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Why We Chose Microvascular Decompression (MVD)

My family and I have been asked by many people, for many different reasons, why we chose to pursue Microvascular Decompression for our daughter.  Friends and family were curious and trying to understand this crazy journey we are on.  TN friends and family are looking for information and to see if there is something to learn from our thought process. Others thought we were a bit crazy for jumping straight to the big, scary treatment for TN, even doctors we were going to.  But let me explain…

KatieRose before her 1st MVD, just days after her 12th birthday.

Before the first surgery, a rather small dose of Trileptal was managing KatieRose’s pain quite well.  So I can understand the questioning.  After all, if your choices are “invasive brain surgery” or a couple of pills twice a day, it seems pretty straight forward, right?  But it really isn’t.

We were told we should stay on medications, and this “is a disease of desperation.  Stay on these meds until they stop working.  Then we will add something else in.  When that stops working, we will switch to something else.” (My emphasis added.)  And that was from a neurosurgeon who would not perform MVD on KatieRose, because he didn’t see a compression on her MRI.  I was told this was just to be her life now.  I sat in my husband’s office and lost it.  I cried and sobbed.  I was absolutely defeated.  I did not want a life on these meds, with a future of more medications and breakthrough pain, to be our girl’s path.

We had been turned away from 2 neurosurgeons for MVD with KatieRose, so initially it wasn’t even an option.  Then we cold called Dr. Ben Carson’s office at Johns Hopkins and after a consult and new MRI  he told us that while he still didn’t see a compression, from her symptoms he really thought he would find one if he went in.  He was willing to do exploratory MVD if we were.  After recovering from my surprise (I took his call while driving down the road and had to pull into a parking lot until my brain could catch up!), and some discussions and prayer with hubby (exploratory brain surgery?!) we decided to go for it.

Following is the list of reasons my husband and I developed for pursuing MVD with KatieRose:

  1. There is no guarantee she is ever going to go into remission.
  2. If she does go into remission, it is temporary. It will come back.  The longest remission I’ve read about or heard about is 6 years.  It is overwhelmingly likely that, if she had a remission at all it would be short lived, in the range of a few months.  Then we are right back at this decision.  If she was fortunate enough to get a really long remission, that would make her how old – 16? 18? –  when it came back.  Is it going to come back and have us right back in this same place when she is a new driver? graduating from High School?  Or maybe our remission is amazing, and it’s when she’s graduating from College?  Getting Married?  Pregnant with her first child and can’t be on meds to help with the pain?
  3. These meds are not good for many reasons. For one thing, her academics are really hurting.  She has worked 3 extra hours a week with a private tutor – for three years – to read on grade level, and these meds are taking that all away.  And making her withdrawn and not herself.  For another thing, no one can tell me what the long term effects of this volume of medication is on a developing brain, but I can tell you no one is reassuring when I bring it up.
  4. We don’t like these meds, and they are escalating much more quickly than I am happy with. At this rate, there is no way these are going to be effective for the next 5 years, much less the 70 years we still have to manage TN.
  5. Other procedures are damaging (palliative is the medical term). That means they are going in and damaging part of her nerve to stop the pain.  But they are temporary, and it is assumed the pain will return and the nerve will have to be damaged again.  And again.  Each successive time the nerve is damaged increases the chances of nasty side effects that include permanent facial numbness and/or pain.  That is not a road I am ready to start down with my 12 year old.
  6. MVD *after* any of these aforementioned palliative procedures has a lower success rate, so doing any of those now hurts the chances of MVD being successful later.  Depending on what it done and the progression of her pain, MVD may not even be a viable option after years of other treatments.
  7. Right now, she is 12 and in 6th grade, and I can carry her through this.  If she misses some math class, no big deal.  We can make that up.  I can get her to appointments, get her home, care for her in her own home while she heals.  These things won’t always be true of her life.  Are we looking at juggling this surgery in college?  When she has her own kids?
  8. MVD is the only procedure that is directed at removing the source of the pain – any compression – also preventing continued damage to the nerve. MVD is the only procedure that does it’s best to not damage the nerve in the process.  MVD’s “success” is defined as pain-free & medication free for 6-10 years, which is a higher standard than any other procedure.  And I have spoken with 2 people who are at 20 years and counting, and heard from another who is at 30+ years.  It’s a shot.
  9. I understand that this may seem a drastic step. But I have to make decisions for her right now that are good decisions for the rest of her life.  TN has no cure right now.  I understand that.  But  I have to make a decision now that not only helps her pain now, but does the least damage with the long term in view.

This list of reasons still stood, even though that first MVD wasn’t successful and relapsed after 8 months.  We found ourselves with Dr. Mark Linskey at UCI Medical Center for a second MVD.  There is more to that decision, but that’s a story for another time.

In the interest of honesty here, the fact that we had reasoned this all out and were as sure as we could be of our decision, doesn’t mean I didn’t have some sleepless nights leading up to her surgeries.  It’s a big thing to hand your child over to a neurosurgeon.  Twice. There were still nights all the ‘what ifs’ plagued me.  But those things didn’t change the above, it just meant I was human, and I was afraid.

I realize that not everyone is  a candidate for MVD.  However, I do encourage you to get a second and third opinion, at least, if you have heard that your child is not a candidate.  Whether or not you are a candidate should be determined by a very thorough evaluation of your child’s pain by a top neurosurgeon who works with Trigeminal Neuralgia patients regularly with success.  We will be posting a list of questions to ask a potential neurosurgeon in the near future.

I wish all of you on this journey many pain free days ahead, and a cure for us all.

The Power of Not Being Alone

We have had an amazing experience this week.  We have a secret little corner of Facebook for parents of TN patients.  We share info, ask questions, and sometimes vent at the basic wrong-ness of having a child fighting this beast.

A couple of weeks ago, one of the families posted that they would be in CA for a doctor’s appointment with one of the doctors a number of us have traveled to see, would anyone else happen to be there at the same time?  Astonishingly, 7 families would be there about the same time, with ~40 hours of overlap.

So coordinating went into overdrive, and literal spreadsheets of schedules were made.  We unfortunately were unable to get all 7 kids together at the same time. But we did get 6 at one time, and then swap one child out and another in, and have 6 another time.

If you are a parent of a TN Kid, you need to talk to other parents of TN kids.  I can not tell you how beneficial this can be.  The first night when we got 6 families together, we were in an Italian cafe, and we toasted not being alone, and we shut the place down together that night.  It is powerful to not be alone.  To say “the pain” to someone, have them reply “I know.”  And they really do.  Really.  They’re not comparing it to that bad headache they had last week.  To meet others who are tearing up – Moms and Dads – because they have been fighting the same battle with their children.

You are not alone.

And you know what?  Your child needs to connect with other children with TN.  Because THEY ARE NOT ALONE.  They are not the only one.  They are not weird.  (Well, ok, they may be weird.  We have plenty of the best kinds of weird running around.  But it’s not because of the TN!)

It can be awkward: texting, skyping, whatever, with far flung other kids your child doesn’t know.  All of the kids who have done so have been hesitant at first.  Most of the actual “texting nights” have been precipitated by one of the kids being in a particularly bad place, motivating the other kids to throw caution to the wind and jump in.  And every one of them have said it was really awesome, and not nearly as awkward as they were worried it would be by the end.

They are not alone.

Don’t be alone in your fight.  If you want to get more connected with other TN families, you can email us at TNKidsRock@gmail.com.

TNKidsRock the News!

In a very last minute coordination, we were able to arrange a follow up interview with Eileen Frere of KABC news channel 7 this afternoon. Tracy and Ang were both there also, so the interview was with all three of our TN Kids!  To see the segment, check it out here.

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We are SO THANKFUL to Eileen Frere for following our story since we first met the day before my girl’s 2nd MVD.  She has always been quick to do a follow up with us, and has been thankful right along with us to hear of the number of kids and adults who have found hope, and even another avenue of treatment, through this story.

If you find yourself at the page because of seeing the story, welcome!  Thank you for your interest in Pediatric Trigeminal Neuralgia.  This site is newly launched, and we are just populating it.  Keep checking back for new information.

If this story has touched you, and you want to DO something – here’s what you do:  Go to The Facial Pain Research Foundation and make a donation of any amount at all.  This is the only organization researching specifically for a cure for Trigeminal Neuralgia.  Michael Pasternak is not only the founder of the foundation, but also a TN patient himself, and a dear friend.  The foundation is 100% volunteer, and is funding 3 different research projects right now – not counting the one that is so promising it has now been picked up for funding by NIH.  If you make a donation and mention TNKidsRock, Michael will know it is because of our work and send us a note letting us know it happened.

If you are a TN Patient, welcome, and gentle hugs to your non-TN side.  We fight on along side you, and are working for a cure for all of us.  For more info on Facial Pain and TN, check out TNA – The Facial Pain Association, including upcoming conferences where you can not only meet others with TN, but hear leading medical professionals talk about their work in the field.

If you are here as the family of a pediatric TN patient… You are not alone.  I know it feels that way so much of the time.  Pediatric doctors usually have never seen a TN patient before, and you are all learning together.  There are many unique challenges you will face, and you have to think about treatment differently than an adult patient.  We want to be here to walk alongside you, share knowledge, and learn together.  You can contact us through TNKidsRock@gmail.com.  Hugs to you.

To all in the TN world, fight on.

~Meg, Ang, Tracy & Stacie

The Pain Journal

I’m so sorry to be making this post.  I’ve stopped several times and had to walk away.  It’s hard to talk about the reality of the pain your child is going through.  At times you develop a clinical distance from the emotional part of it, because you have to in order to get through the conversations you have to get through.  But other times, well, that’s just impossible.  This is a very, very hard topic.  Yet it is also very important.  So we will discuss it.

One of the things we recommend is keeping a pain journal. If your child is younger, this will be you, asking questions and writing things down. If your child is older – or as your child gets older – this changes to them tracking this information.

The information in your journal is an extremely helpful diagnostic tool. When your child has pain like this, you think you will never forget, and in a way that is true. But after months of dealing with TN, things do start to run together.  Details get lost in the pile of details you are having to stay on top of every day.  So it is truly important to write details of the pain down.

The pain journal will allow you to go back and analyze things like: How did she react to that medication? or Is this action becoming a consistent trigger? How long has this new pain been involved in attacks? How often does she get attacks in the middle of the night? Is his pain more stabbing or throbbing or boring? Are these attacks getting longer? Or more frequent?

This information is very valuable to your doctors, and the more detail you are able to give a good doctor, the better diagnosis you will get. For several of us, our (or our child’s) ability to specifically describe the pain expanded the exploration during brain surgery, and caught compressions on other nerves that may not have been caught without that information.

Your doctor may or may not want to actually review your pain journal. However, I strongly recommend not only taking it to the appointment and referring to it, but reviewing it before your appointment and marking significant changes and/or anything that sparks questions for you.

So – what should be included in the pain journal?

The basics should always be included:

  • The date
  • What time did pain start and end?
  • What type of pain is it? (stabbing, throbbing, etc.)
  • Where was the pain located? (The more specific the better.  Does “ear” mean in front of the ear?  Or inside the ear?)
  • Is the pain constant? Or are there breaks?  Or are there both components?
  • Where was it on a scale of 1-10? (You will get this question A LOT.)
  • Was there any action immediately prior to onset that could be a trigger?

It’s also good to include information such as:

  • The current regular medication dosage. I would always note the day that we changed dosages and highlight it.  That would make it easier to find later.
  • Any medication taken for breakthrough pain, and dosage.
  • Whether breakthrough medication helped or not.
  • Things that may help you narrow down triggers: location, weather, eating/drinking, etc.

As far as what you should use, it can be as simple as a pocket –sized notebook, that’s all I used.  It fits in the purse, it goes everywhere with us.  Or as sophisticated as it helps you to make it.  The biggest thing is for it to be something you will have with you, and you (or your child) will use.

On the Resource Documents page is a downloadable spreadsheet called Jen’s Pain Journal, which one of our dear TN Mama friends developed for her teen daughter to use.  With it, she need only fill in blanks, and circle the correct information.  During pain, the quicker and simpler, the better.

When they are experiencing pain, it is sometimes very hard to impossible for our kids to communicate details clearly.  There were times I would just have to wait and cry through it with her, then once it was finished – or at least less – she would go through and answer questions for me.  Sometimes I would make notes of body language, and ask her about it later.  When she was actively trying to claw through her mattress and sobbing, I didn’t have to ask where she was on the scale.

It became a weird kind of sixth sense, to be able to look at her body language and mentally guess pretty close what level her pain was at.  For my daughter (and yours may be different, so don’t necessarily go by this) talking, school work, and life as normal could continue up through a “3” pretty easily.  Quiet and eyes closed happened at about “4”.  Fidgeting started around “6”.  Tears around “7”.  And I don’t like talking about the top of the scale, which seems to me to shoot past “10”.  Her scale also changed over time as she developed a high tolerance for pain.  I guarantee you that her “2” is not my “2”.

This can be a hard thing to do.  Who watches their kid in pain and takes notes for goodness sake?!  I know. Really.  At the same time, a good neurologist and neurosurgeon are going to be really helped by the details.  That part will be entirely worth it.  Once we started going to doctor after doctor, and they would ask so many questions about the pain, my girl became very cooperative in making the notes.  If I didn’t ask the right question, she would tell me about some new piece needed to be noted.

Again, if you are reading this, I’m sorry.  You’re probably doing so because you or someone you love needs this information.  It’s not an easy place to be.  We wish you all the best in your journey.