Get The Facts on DBS for Epilepsy - Connect with Education and Patient Stories
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- Опубліковано 30 лип 2024
- Fiona Lynn, NP from Rush University educates on refractory epilepsy and when DBS may be an option. Two people with refractory epilepsy share their journey and life since having DBS therapy.
- Наука та технологія
Pls sort out the sound in this video
What would you suggest for someone having up to 5-7 simple and complex partial seizures a day? That’s also with a 2/3 posterior Corpus Calosotomy, I’m on my 2nd VNS, and I’m currently taking 23 seizure meds a day. I have a very rare type of Epilepsy ,LGS, and experience several types of seizures. My doctor is pushing for DBS and researching it now. Before my Corpus Calosotomy, this was the option he gave me, choose between the two, you would be ideal. I chose the Calosotomy just because it’s been done since 1940.
About to have one done on me soon.
Hey, you had the device implanted? How things turned out for you?
@@patirocha everyone is different.
They implanted two of them in me. In different places (spots where my seizures were mostly coming from).
They have to adjust your meds when they’re implanted. The two work well together but when one is too strong things don’t go well. I take fewer meds now but it took a while to find the correct dosage of my meds and the correct power for the implants.
No I do not feel anything when they are active. You need to remember to record your daily data to your computer every night so your Doctor can see it.
I'm gonna get it in a few months. Can you please help me get in contact with Sarah or Erica? My name is Van and I've had epilepsy for 37 years.
Hey, you did the procedure? How things turned out for you?
@@patirocha It was easy. Ever since I believe the amount of my seizures has decreased.
I feel no different or my head feels the same.
The stimulator needs recharging using a wireless collar device.
When it's turned on I feel a small nuclear explosion in my head causing no pain. Lasts for less than 10 seconds.
Lucky me, I feel no symptoms or side effects ever since.
@@patirocha The device is split into 2 wires, but sadly, my seizures take place from 3 areas of my brain
Had to stop watching this because the sound quality is ridiculous