DBS aka deep brain stimulation

shortie89

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I have never had a medication that has controlled me. So my next thought was surgery. As much as that scared me, i just went for it.

I went to Stanford and spoke to my neuro and asked him what can be done, I told him that i am sick of living in fear and having to depend on others because of my E. Thats when it all began.

He then gave me an appt for a DBS, its very similar to a VEEG. However the probes are actually in the brain. The probes are about 3-4 inches long, I had 7 of them in my head total for the duration of 5 days. I had 3 on each side of my head (above the ears), then one placed in the crown.

Once these probes where in place, the surgery itself was 4 hours, i was awake and monitored the rest of the time. While these probes where in place i was even given an EEG..So my head had alot going on.

Once the test was over my neuro told me that he was able to pin point my focal points of the seizures. I had focal points of both sides of the brain, right and left :(

However, my neuro then told me that Stanford is waiting on FDA approval for a new implant that has had very good success. He said that it should happen within the next 6-12 months...so now im a tad bit anxious, but still nervous. I say nervous because if it does happen then i will have to go through "surgery" again

This DBS test is/was usually used on those who have parkinsons disease. I was only wondering if any others have had it done because of the disibility of the "lovely" epilepsy?

Shortie:e:
 

Nakamova

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My cousin with Parkinson's has had DBS, prior to his own brain surgery. It sounded like a very strange experience...

The current track record of implants (such as VNS) is less-than-perfect. It can definitely help some people, but doesn't necessarily eliminate seizures altogether. I hope this new implant really is an improvement -- Make sure you know the success-rate statistics before you sign on.
 

shortie89

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Strange experiance is true..

My neuro has even said it would be looked at very carfully before we go through with anything..He has also told me that i will most likely just have to deal with meds for a pretty long time...depending on how i react to this implant...i might be on less as well. At the moment i take 1800 mg of Trileptal and 500 mg of Topamax, I also have to take Ativan when it takes me a good while to come out of a seizure.
 

Cint

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The current track record of implants (such as VNS) is less-than-perfect. It can definitely help some people, but doesn't necessarily eliminate seizures altogether. I hope this new implant really is an improvement -- Make sure you know the success-rate statistics before you sign on.
I had an unsuccessful LTL, have tried many meds and then went for the VNS surgery. NO, it hasn't eliminated all my seizures, but it has lessened them significantly. Prior to the LTL, I was only having CP seizures. After surgery, they progressed to TC seizures. Now the VNS can at least stop the TCs and most of the CPs if I don't drop the magnet during the aura.

Here's an article about DBS:
http://www.sciencedaily.com/releases/2010/03/100318082016.htm

I hope you have success with your decision.
 
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I'm a qualifying candidate for DBS, but I'm not eager to have my skull cut open to have probes inserted. What I fear most is possible hair loss afterwards lol. My hair is full and thick and I don't want to lose that.

I have partial/ focal seizures or events. My hand twitches (a prefix to a seizure anywhere from 30 seconds - 2 mins) my neurologist says DBS may stop that. "That" is a 40% chance of stopping my events.

He mentioned it only has had a 40% success rate so far. (another deterrent for me)
I'm consulting another doctor that is a "leading neurologist and an innovator" in neurology tech for another opinion.

I'm in a similar scenario: I have exhausted my medicinal options. Only sleep helps my seizures; no matter how perfectly I take my meds or how many times they're adjusted.

Best luck, though.
It's your brain. Use it to make smart, rational decisions.
 

epileric

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I am in the middle of reading an article on Deep Brain Stimulation in "The Brain" magazine, put out by Discover.

According to this interview with Neurologist Helen Mayberg, there are only 100 people with DBS in the US and not all of them for epilepsy so it's very early to say what the results are.

If someone recommended it to me I would as to see the statistical results & the specifics. If someone says (hypothetically) that 80% of people using DBS had positive increases in seizure activity, then I would ask by how much because if they all only had a very small increase I'm not interested. Try to think in those terms when asking questions & reading results.

However, my neuro then told me that Stanford is waiting on FDA approval for a new implant that has had very good success. He said that it should happen within the next 6-12 months...so now im a tad bit anxious, but still nervous. I say nervous because if it does happen then i will have to go through "surgery" again
If the implant hasn't been approved yet then how can it have had good success other than in its trials? You should ask to see the results if they're so good. If they're hard to understand ask if s/he can explain them to you & if not then ask if you can photocopy them & take them home. Otherwise, I'd be suspicious.
 

suebear

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I have never had a medication that has controlled me. So my next thought was surgery. As much as that scared me, i just went for it.

I went to Stanford and spoke to my neuro and asked him what can be done, I told him that i am sick of living in fear and having to depend on others because of my E. Thats when it all began.

He then gave me an appt for a DBS, its very similar to a VEEG. However the probes are actually in the brain. The probes are about 3-4 inches long, I had 7 of them in my head total for the duration of 5 days. I had 3 on each side of my head (above the ears), then one placed in the crown.

Once these probes where in place, the surgery itself was 4 hours, i was awake and monitored the rest of the time. While these probes where in place i was even given an EEG..So my head had alot going on.

Once the test was over my neuro told me that he was able to pin point my focal points of the seizures. I had focal points of both sides of the brain, right and left :(

However, my neuro then told me that Stanford is waiting on FDA approval for a new implant that has had very good success. He said that it should happen within the next 6-12 months...so now im a tad bit anxious, but still nervous. I say nervous because if it does happen then i will have to go through "surgery" again

This DBS test is/was usually used on those who have parkinsons disease. I was only wondering if any others have had it done because of the disibility of the "lovely" epilepsy?

Shortie:e:
I have a DBS for Epilepsy. I had mine installed in August and I'm doing okay with it. I've almost reached six months but not fully; it takes the brain a full six months for recovery.

Feel free to email me at any time if you have questions. I had my surgery done at University of Nebraska in Omaha, NE.

By the way to whomever it was that was stating they were seeking information on the Internet about DBS for epilepsy, you won't be able to find any as the DBS for epilepsy is still a new procedure in the United States.
 

suebear

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I am in the middle of reading an article on Deep Brain Stimulation in "The Brain" magazine, put out by Discover.

According to this interview with Neurologist Helen Mayberg, there are only 100 people with DBS in the US and not all of them for epilepsy so it's very early to say what the results are.

If someone recommended it to me I would as to see the statistical results & the specifics. If someone says (hypothetically) that 80% of people using DBS had positive increases in seizure activity, then I would ask by how much because if they all only had a very small increase I'm not interested. Try to think in those terms when asking questions & reading results.


If the implant hasn't been approved yet then how can it have had good success other than in its trials? You should ask to see the results if they're so good. If they're hard to understand ask if s/he can explain them to you & if not then ask if you can photocopy them & take them home. Otherwise, I'd be suspicious.
I honestly have to say you have no right in passing judgement on something or telling someone how to live if you do not know what it does. The DBS for Epilepsy is something that has been on the market in Europe for 10 years - 10 years!

While the item has been used here in the United States it was discovered by accident that it can be beneficial for epilepsy along with other muscle and nerve disorders. The FDA has a lot of codes that require this item still needs to be tested. So, to answer your question as to how someone can actually obtain it?

I got it by proving to the insurance company that I was a candidate. I went through a series of testing with my neurologist. In the neurolgical world, it stated that should I meet certain factors that I will fall into the required candidacy. I'm not going to go down the list but everything the insurance company wanted I met plus I added a few extra onto the list they did not anticipate.

I was accepted and shortly afterward it was a matter of waiting. In total, I spent approximately a week in the hospital because they removed me from medication first, then mapped my head with seizure activity with an EEG, then performed the surgery, I then stayed in the hospital for recovery thereafter.
 
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