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“Bilateral trigeminal neurologia?”

I was told by a neurosurgeon that my Bilateral Trigeminal is inoperable because of the damage they would probably cause getting to the damage to my nerve. I am having trouble even getting another appointment with him to ask questions. I was told I would have pain and burning in all 6 regions. The sheath is disintegrating. The problem as time goes on, I am even having trouble talking, eating, speaking, opening my eyes, and blowing my nose. The pain is not only on the top of the skin of my face. Is this the way it should be progressing or should I think something else is also wrong?

Female | 62 years old
Complaint duration: more than 5 years
Medications: Insulin both daytime and nighttime, Thyroid meds, Seizure meds, Gabapentin, Cymbalta, stomach meds, mini-press for PTSD, Blood pressure meds and Percocet
Conditions: I also have a jaw that has died and is breaking apart, Diabetes, High Blood Pressure, No Thyroid or Gall Bladder, history of cervical Cancer, Liver Disease and systs on my Kidneys and Seizures

2 Answers

Have your neurologist consult a different neurosurgeon and get a second opinion. You are already on a significant amount of medications used to treat Trigeminal Neuralgia (apparently without significant success). I would consider alternative therapies. Try CBD, it's highly efficacious for pain, inflammation, and seizures. You may also try vitamin B6 (Pyridoxine 50 mg daily).
Bilateral trigeminal neuralgia is exceedingly rare. Only 3% of all trigeminal neuralgia patients have it on both sides and almost all of the 3% have multiple sclerosis as the cause for the pain. Surgery for trigeminal neuralgia is microvascular, meaning the hole in the skull made to do the surgery is about the size of a quarter. If bilateral surgery is done, then each side of the skull would have a small hole. In patients with multiple risk factors for surgery, in whom medications have not worked, the alternative therapy is "Gamma Knife." This uses a focused beam of radiation, without any incision, or anesthesia risks. It sounds that you need to see a neurosurgeon who can provide you with multiple options, including making sure you really do have bilateral trigeminal neuralgia and not something else.

John A. Ortolani, MD - What Is Neurology?

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