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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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Discussion

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

  1. Very well written on the steps you go through with this disease. I am so glad you never did any of the destructive procedures. I didn’t either and my journey was similar except my Dr. told me that I had “transitioned” from TN1 to TN2 because the de-myelinzation of the nerve was so bad. One thing I wish I had learned was that even the “best” neurosurgeons may be wrong. They are all always “in training” and the technology is changing all the time. I wish i could say that the myelin would heal but in my case it has not (so far). I am left with the damage but there is still hope.

    Eight years after having my MVD (which supposedly did not show a compression) I decided on the Motor Cortex Stimulator for pain management. Before the surgery the neurosurgeon did another MRI and when comparing them he could clearly see the compression on the first MRI done 8 years earlier. Although the pain is not completely gone it has helped control it so I can have a semi normal life now. Before this device I had pain at a 5-8 most days with a cocktail of antiseizure meds and narcotics. Since the surgery I live between a 3-5 range. I’ve lost 15 years of my children’s lives in pain and still have to manage it but I have developed an attitude that I CAN live a life of love and happiness despite my circumstances. My children have grown up to become the most loving, sensitive and compassionate young adults and my husband is a gift from God.

    Like

    Posted by Amy M | March 12, 2015, 6:07 pm

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