Doctors and pediatric trigeminal neuralgia
Adult neurologists go through four years of training in a neurology residency right out of medical school; however, “pediatric neurologists” do not do a neurology residency. They complete a three-year general pediatrics residency followed by a one to two-year “pediatric neurology” fellowship which usually only includes three to six months of adult neurology exposure and training, and in some programs includes none at all.
Since less than 1% of trigeminal neuralgia (TN) occurs in patients <18 years old, many pediatric neurologists have never seen a case of TN, and very few have any training experience in the disorder. 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 seven-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.
Out-of-state subspecialty referral for rare pediatric diseases
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 U.S. received their healthcare services through Medicaid. This is 59% of all children in the U.S. 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.
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-state referrals then can become significant barriers to access and quality of care.
High-dose anti-epileptic drug use in children
TN patients are initially treated with one or more antiepileptic 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, they 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. Imagine being afraid to have someone touch your face or kiss you if you are an adolescent 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.
The importance of finding the right surgeon
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. 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 intraoperative ABR (auditory brainstem evoked response) monitoring to minimize hearing loss risk E) Works with an intact experienced team including neuroanesthesia, neuro technicians experienced with shredded Teflon felt and microsurgery, a dedicated neuroICU and neuro nurses F) Ideally is analyzing and publishing their own surgical results in the peer-reviewed literature for comparative purposes