Alternatives to lobectomy and VNS?

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kirsten

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I spoke to my medical insurance provider yesterday and they've told me VNS is an exclusion. I need a little help from those of you with more experience.

Just to begin, I have truly exhausted the medication option--I've tried everything except neurontin, which will not control my tonic clonics so is not much of an option. I have temporal lobe epilepsy and have had the pre-operative hospital EEG (not sure what it's called these days) and that shows that I am a good candidate for the lobectomy. My neurologist wanted me to have VNS and, if that didn't work, he wanted me to have a lobectomy.

After speaking to my provider, I now know that they do pay for deep brain stimulation, which is not VNS. I am wondering why it wasn't mentioned by my neuro. Have any of you had it, and found it worked? Does anyone have information on its efficacy?

Of course, the lobectomy is the obvious solution but it seems excessive when I think that if I wait a year, I can go to a better health plan and get the VNS. The trouble is that I am really ill on my meds at the moment and am struggling to work. I can't imagine going through another year of it and I am, in any case, having seizures now, so things are looking pretty bad. I have read through all the positive stories from those of you who have had a successful lobectomy but I have to consider that there are major risks and some people don't get results. My thoughts are to move from the least invasive option to the most invasive--in that order.
 
HI Kirsten, I really don't have much info for you, but I do agree with you about moving from the least to the most invasive. As you have probably read, I just got a vns which I am optimistic will really help my refractory partial seizures. As you know, though, there are no guarantees with any of these treatments or procedures. I have read some about deep brain stimulation but not a lot. Google it and you will find all you could ever want to know, though. Be sure to find research and stats on it as well as anecdotal information from people who may have opinions biased one way or the other based on personal experience or stories they have heard. Anyhow, I'm sure you know all of that, but I wish you well in your search. I had a neuro who kept talking to me about a lobectomy but I really did not want them fussing around with my brain. The vns seems very non-invasive. At this point I hardly know it's there, but I just got it activated this morning. We will see what happens over time. Best to you!
 
Thanks, Arnie. I've been reading your progress. I've really appreciated your giving us all the details. It's the sort of thing that can't be researched and it's helpful for those of us trying to make decisions.
 
cut it open, get in there with a spoon, and dig around, see what you find.
 
Sounds like a plan, COurt. After all, what could go wrong?
 
Thanks, CQ. I've gone through the thread and pmed her. Hopefully she is still hanging around the forum.
 
Kirsten,

I had a Left Temporal Lobectomy back in 1990 and was seizure free for 14 months. Then the seizures came back with vengeance. I had tried nearly every AED, too. In 1998, I had my first VNS put in, and although it hasn't completely stopped my seizures, it has reduced the frequency. In April of last year I had my 3rd battery replacement. I have it on the highest setting, charging every 3 minutes for 8 seconds, whereas initially they usually set it to charge every 5 minutes for 30 seconds. It will effect your voice when speaking and some have trouble with swallowing. But for me, it beats brain surgery. Depending on which side of the brain they're thinking of cutting open, there is a lot to consider: speech, memory loss, mood changes, more seizures, stroke, or more.
 
kirsten said:
After speaking to my provider, I now know that they do pay for deep brain stimulation, which is not VNS. I am wondering why it wasn't mentioned by my neuro. Have any of you had it, and found it worked? Does anyone have information on its efficacy?
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According to the epilepsy.com website, here is some info on the efficacy of the Deep Brain Stimulation:

http://www.epilepsy.com/epilepsy/newsletter/apr10_deep_brain_stimulation

In March, 2010, the scientific Journal, Epilepsia, published results of the trial entitled Stimulation of the Anterior Nucleus of Thalamus for Epilepsy (SANTE), authored by Fisher and colleagues, with trial sponsorship from Medtronic®, Inc. The trial studied 110 people with partial seizures with or without secondary generalization, not responsive to at least three seizure medicines. At baseline, the average seizure frequency was 57 seizures per month, with a median seizure frequency about 20 per month. Under anesthesia, wires were implanted in a "pacemaker" structure deep in brain called thalamus. The wires were connected under the skin to a battery-powered programmable stimulator on the chest. For the first three months (after a three-month baseline), half of the patients were given 5 Volts stimulation and half 0 Volts (placebo). One subject initially had seizures triggered by each stimulation cycle, but this improved immediately when the voltage was reduced. Not counting that individual’s seizures, the median reduction of seizures compared to baseline was 40% in the stimulated group and 15% in the control group. Injuries from seizures and the seizure type designated by the patient as most severe were significantly improved by stimulation. Subjects who previously had not benefited from vagus nerve stimulation or epilepsy surgery still could show benefit from deep brain stimulation. After the three-month blinded phase, all stimulators were turned to 5 V, and both groups continued to improve over time. By two years of stimulation, seizures were reduced a median 56%, and for those reaching three years, a median of 68% (to 1/3rd baseline levels). Stimulation was generally well tolerated. There were no deaths attributable to stimulation, no symptomatic brain hemorrhages and no brain infections during the trial. There was a suggestion of increased depression or memory problems in some subjects, and a few subjects had seizures triggered at the immediate onset of stimulation, which improved with lowering voltage. The conclusion is that deep brain stimulation is a useful new therapy for some people whose seizures cannot be controlled by other means.
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Thanks, all, for the information. Yes, Bernard, I had gone through those pages. After the lessons learned in these many years, I have cut out all the negatives and tried out all the positives. Still no luck.

I spoke to my neurologist this morning and we are now leaning towards trying to manage the medication for the year it takes to get onto insurance that will cover VNS. If that isn't successful, it will probably be DBS, but I've decided not to get ahead of myself just yet. The doctors are now taking action after having seen me so confused and messed up this morning, and are admitting me to hospital to make a more drastic change than they would if i stayed at home, and to look after me. I'm relieved about that, because I am struggling alone at home. You've given me a more realistic view of these procedures. I didn't think of the possibility that someone might need more than one of them. Thankfully, my expectations are now more in tune with reality.
 
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