A relative of mine in California is about to have a vagus nerve stimulation (VNS) implant installed for treatment of epileptic seizures. Her quote: "My new neurologist, who is an epileptologist, suggested I consider VNS to control my seizures since they are considered intractable if not controlled by taking two medications (and I take three). I know there are no guarantees, and there are (generally) minor side effects. My doctor gave me names of other patients to talk to, and Cyberonics' representative met with us to answer questions in advance. It's an outpatient procedure at Kaiser."
Anyone out there want to offer comments on their personal experience with this therapy to help her in anticipation of her surgery next week, and the device being turned on a couple of weeks after?
At least she'll never have to have another MRI.
ReplyDeleteI hope it works for her.
GruntDoc
I'm an epileptic and thank goodness my seizures have been under control for 7 years now. But there was a time when they were not - and having repeated and uncontrollable seizures is a frustrating, traumatic thing to go through. If I were in her shoes, I'd do the VNS, no questions asked.
ReplyDeleteA good friend of mine's husband is plagued by seizures after a severe head unjury. He is currently considering undergoing something similar.
I just can't imagine any side effect being worse than a seizure.
I hope all goes well for your relative!
There is research being conducted on the effects of noninvasive brain stimulation on epilepsy here at BIDMC. So far the results look promising. But it is still just research and it depends on the type of epilepsy a person has. Just something else to consider...
ReplyDeleteI only have an amusing anecdote to contribute, which may point to a mild side effect. I had never heard of this procedure until a conversation with the extremely nice, but mentally challenged, son of one of our prominent surgeons. He was employed by the hospital in the mailroom and everyone kept an eye on him as he was known to have frequent seizures.
ReplyDeleteOne day, seeing him in the hall, I asked him how he was like I usually do. He said "Well, I don't know." When I asked what was wrong, he said "I just got stimulated." I had no idea what he was talking about nor the faintest idea how to respond to that statement.
Later, I learned that he had undergone this procedure on an experimental basis. All reports were that it seemed to help him, but I never forgot that exchange. I gather it may have some 'shock effect' when the device discharges.
My daughter is 16 months old and had VNS surgery in August of this year. She was dx'd with Infantile Spasm at 3months of age and her seizures were ranging from 100-800 a day. Yes 800 seizures daily! She has since (in Aug) graduated from IS to Intractable Epilepsy and that is when we decided on VNS. She is one of the youngest, at her hospital, in Ft Worth, to receive VNS. It has helped her tremendously and it was turned on directly after surgery when they closed. The side effects are minimal considering the alternative, ie., more seizures and/or brain damage. If your relative would like to know more have her e-mail me. We have a dvd that they gave us pre-op and she's welcome to have it. My e-mail is canivalpo@yahoo.com
ReplyDeleteYou might also encourage her to join some online groups on yahoo. They have several epilepsy groups including surgery patients and/or differnet therapy patients, such as VNS and for family members.
Hope she does well with whatever choice she makes.
I used to work with a few Neurosurgeons on the West Coast that I consider experts - drop me a line at helgerso@gmail.com if you'd like to connect with them.
ReplyDeleteDear Paul,
ReplyDeleteI had the chance to listen to you speak the other day at the ELP luncheon at the Marriot Copley. As a nurse I found your speach inspiring so I decided to check out your website. I found it interesting to see mention of the VNS as the first thing I read. My sister has had a epilepsy since childhood. She had the VNS stimulator placed several years ago when they were still very new. Unfortunately with her disorder being so severe we did not see much improvement. But as your family member mentioned there was no horrible side effects. My sister has been on every epileptic medication known, and has had surgery on her brain with no improvement. After she had the second surgery on her brain she was left with no short term memory and her seizures worsened, the medications can give her horrible moods and once caused her to have aplastic anemia and when we finally realized it her HCT was 18. We used to be willing to trial new medications or consider new surgeries but not anymore. But, one thing we have discussed recently is the implant of new a VNS this is the one thing we are willing to do again. Especially since they have improved and again there is so very little risk. Just remind your family member never put the magnetic swiper near her credit cards...Best of Luck in her decision
Hi Mr. Levy,
ReplyDeleteYou have a great Comprehensive Epilepsy Program at BIDMC comprised of many experienced physicians and nurses!
Use them as your resource! Drs. Schomer, Schachter, Drislane, Krishnamurthy, Chang, Pang, Kiriakopoulos, Selvitelli, and Sheen or nurses Shafer and Sundstrom would be more than wiling to answer any questions you may have or provide additional info.
Thanks, I agree, and she has gotten information from that quarter.
ReplyDeleteAt least she'll never have to have another MRI.
ReplyDeleteOh please. MRIs are noisy but harmless. CTs give radiation and don't let you see the mushy bits well. That's a disadvantage.