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VNS Surgery

This article was written shortly after Sara had the VNS surgery.

A Cure for Seizures?

By Jeanette Joy Fisher

Perhaps you or a loved one suffers with a seizure disorder and you’re looking for the magic pill. Some seizure drugs work well for many patients. However, other patients in desperate situations have gone through major brain surgery, which sometimes proves ineffective. When our daughter’s prescribed seizure drugs caused her life-threatening side effects, we looked for other new alternatives besides brain surgery.

Vagus nerve stimulation (VNS), a new FDA-approved procedure for the treatment of epilepsy, does not involve brain surgery. Doctors implant a devise similar to a pacemaker in the patient’s chest. My husband and I opted for our daughter Sara to have this seizure control therapy.

According to our doctors, the few side effects of the VNS treatment usually decrease over time. These include hoarseness and minor discomfort in the throat, ears and teeth.

A week after putting our daughter Sara through this painful medical procedure, I found a website forum slamming the radical VNS implant.

Oh no! The angry forum writers advise not to use the VNS device on patients who don’t talk! Some seizure sufferers report MORE seizures. Others report intolerable tingling in necks, infections, and paralyzed vocal cords. The forum lists problems like broken leads with no hope of repair, and a defective unit. Posts about turning the devise off; getting it removed (but, the wires can’t be taken off the nerve once wound in)! On and on the ranting goes. Did we make the biggest mistake ever about Sara’s medical care?

What have I done to my precious daughter?

The surgery, currently approved for use in adults and children over the age of 12 who have partial seizures that resist control by other methods, involves implanting a devise approximately the size of a silver dollar under the skin in the left chest area. The surgery lasts between one and two hours and requires general anesthesia. The device, a pulse generator, functions like a pacemaker. Thin wires (electrodes) extending from the generator are threaded under the skin and wound around the vagus nerve. Doctors program the generator to send a few seconds of painless electrical impulses to the vagus nerve every few minutes. Patients who feel or parents who see the onset of a seizure can manually trigger the device by the use of a special magnet to temporarily increase the electrical impulses.

The vagus nerve, located in the neck, sends messages to and from the brain. This nerve carries messages to the heart, lung, stomach and voice box. The vagus nerve also communicates with a part of the brain stem linked with seizures. VNS therapy prevents seizures by sending regular small pulses of electrical energy to the patient’s brain. These electrical pulses interrupt the abnormal brain activity that leads to seizures.

Why would a parent or patient make this surgery choice?
In our case, Sara suffered quit-breathing, turn-blue, aspirating seizures.

Who qualifies for VNS treatment, which costs around $20,000?
The test to see if a patient qualifies for this devise is if two treatment drugs have failed. Only two? How about Dilantin, Phenobarbital, Tegretol, Lamictal, Depakene (valproic acid), Mysoline (Primidone), Phenobarbital (again), and Keppra? And the Ketogenic Diet.

These specific seizure drugs caused Sara the following complications:

1. Dilantin (A trademark used for the drug phenytoin.): irritability, caused by headaches, dizziness, or? Sara can’t speak verbally. We never knew what bothered her, only that she hated something about this medicine.

2. Phenobarbital (A crystalline barbiturate, used medicinally as a sedative, a hypnotic, and an anticonvulsant.): sleeping all the time; zero seizures, zombie life.

3. Tegretol (trademark for carbamazepine): red, roving, bumpy rash.

4. Lamictal (trademark for lamotrigine): gripping all the time—who knows why?

5. Depakene (trademark for valproic acid): Sara became extremely ill and was hospitalized with this diagnosis: thrombocytopenia (an abnormal decrease in the number of platelets in circulatory blood.) and erythroid hypoplasia (red blood cell development stopped). Name of condition? Doctors thought Sara had Leukemia. A specialist was called in to give her a bone marrow test. After more tests, this dedicated doctor determined that a little-known side effect of her commonly used valproic acid was eating up her red blood cells, causing her to bleed out. Within hours of taking her off valproic acid, Sara’s platelet count soared. She woke up and smiled, the first time in days. Depakene controlled seizures for years, but when had the damaging side effects started?

6. Mysoline (Primidone): cardiomyopathy or erratic heart beat.

7. Phenobarbital (again): low heart rate; drowsiness; many seizures with blood levels in therapeutic range.

8. Keppra (trademark for levetiracetam): no side effects noticed; however, no seizure control, either.

9. Ketogenic Diet (A high-fat, low-carbohydrate diet that includes normal amounts of protein): Doctors weaned Sara off her seizure drugs to put her on this diet. Then, they decided that she was too skinny for the special diet.

At the time we chose to have VNS surgery for Sara, no other seizure drug therapy seemed practical. Although she did have a significant decrease in seizures, I can’t say the device lives up to all the doctor’s promises.

If you or a loved one suffers with a seizure disorder, make an informed decision about therapy. Maybe someday soon a cure for seizures will heal the underlying causes and not just try to “control” seizures.
VNS Implant Complications

Copyright © 2004-present Jeanette J. Fisher. All rights reserved.

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