Thread by @EvanThomas84

1/🧵 Let’s talk about Trigeminal Neuralgia (TN), a debilitating condition causing severe, electric-shock-like pain in the face due to irritation of the trigeminal nerve. Often called the “suicide disease” for its intensity. Today, we’ll cover TN, its tx, & a rare but serious complication: Anesthesia Dolorosa. #TrigeminalNeuralgia

2/ TN affects about 12 per 100,000 people annually, more common in women over 50. Symptoms: Sudden, stabbing pain triggered by simple actions like eating or talking. First-line treatments are meds like carbamazepine or oxcarbazepine to stabilize nerve signals. If meds fail, procedures like microvascular decompression or rhizotomy (SRS, RF, glycerol) may be needed.

3/ Now, Anesthesia Dolorosa (AD): A known but rare and very serious side effect of TN treatments, especially invasive procedures. AD means “numbness with pain” – constant burning pain in a completely numb area of the face after trigeminal nerve damage. It can occur post-surgery or rhizotomy, affecting quality of life profoundly. Incidence is low, but devastating when it happens.

4/ Managing TN and AD relies heavily on medications. Anticonvulsants are key: Carbamazepine is gold standard for TN, but alternatives like gabapentin, lamotrigine, or baclofen are used when needed. For AD, gabapentin has shown promise in providing relief, even in tough cases.

5/ Focusing on gabapentin: It’s an anticonvulsant that calms overactive nerves, effective for both TN and AD. However, not all formulations are equal. Generics work for many, but some patients report better efficacy or tolerability with brand-name versions due to differences in absorption or release. This isn’t universal, but it’s a real issue in personalized care.

6/ Case in point: A patient of mine underwent glycerol rhizotomy for severe TN – a procedure injecting glycerol to disrupt pain signals. Tragically, they developed AD as a complication, with constant facial pain and numbness. They tried myriad meds, but only Gralise (extended-release brand gabapentin) provided meaningful relief, allowing her to function daily.

7/ Then, disaster: Blue Cross Blue Shield of Florida (@AnthemBCBS) intentionally excluded Gralise from its formulary. Despite its proven benefit for this patient, generics didn’t cut it – likely due to bioavailability differences. We pursued prior authorization: Denied. Then a formulary exception appeal through Prime Therapeutics (@PrimeRxMed ): Also denied, solely because “it’s not on formulary.” Circular logic at its worst.

8/ This isn’t just bureaucracy – it’s denying life-changing care. Patients with rare complications like AD deserve access to what works, not blanket exclusions. @BCBSFL @PrimeRxMed – reconsider this for those suffering. External pressure can drive change; share if you agree. #AnesthesiaDolorosa #HealthcareAccess #PatientRights

9/ In summary: TN and AD are tough, but manageable with the right tools. Insurers must prioritize patient outcomes over cost-cutting. If you’re affected, advocate! Resources: Facial Pain Association.

(We are considering bilateral centromedian thalamotomy & cingulotomy, which will be necessary without meds)

End/🧵