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.
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.
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.