Seizures and surgery

Posted by mmaryemc @mmaryemc, Oct 15, 2018

Now that my granddaughter has been close to 80 days in a coma, with maybe over 30 different medicines, the ketonic diet and shock therapy done the Drs. next step is brain surgery. They want to remove a "golf ball sized" part of her brain to stop the seizures. They aren't interested in trying to help her control or live with the seziures. Any views on this surgery?

Liked by Leonard, daniel17

Just a couple seconds makes all the difference

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Liked by menville

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@lethargic

I am sorry for what you are going through with your granddaughter. She deserves a normal and healthy life as the rest of us do who are posting on this site along with others who suffer from epilepsy and seizures.
My posts specifically relate along with others who are posting about the effectiveness and their experiences with the drug, Keppra.

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Please does this drug, Keppra really prevent siezure?

Liked by Leonard

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@chynex

Please does this drug, Keppra really prevent siezure?

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From our experience, each med affects each patient differently. But all seem to have side affects too.

Liked by Leonard

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@lady35

I'm 35 have had epilepsy that has gotten worse over the years, so much so that in 2015-2016 hey erased my memory of everything, my 3 kids being born growing up, my childhood. It was being worse I was forgetting conversations 5 min after having them. I at this stage didn't know I was having them I was either asleep or would forget everything from before and after it started., it turned out I had right frontal lobe seizures. Was told I needed to have a partial lobectomy. Or in less than a year the little of my short term memory I could sometimes use would be gone in a year.and the electric currents from the seizures were already getting close to passing to t the left side of they do if be dead by 40. I had the Partial right temporal lobe resection sept 2016. They didn't stop my seizures but they've changed them. I can remember more now. I remember being able to see my son graduate high school. I'm on highest doses of Lamictal, zonigran, and Keppra they couldn't back any off since I'm still having them. So for me it was worth it even if it didn't fully work improved. So the hardest part is deciding is it worth taking the risk doctors want the will probably give some help if not all or keep things ss they are and hope. I did it for my kids any chance at a better option for them was the choice I needed to try. Didn't mean to gamble on just hope some outsider insight might help. Good luck

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Hi! @lady35 ..im 40 yrs old, started having seizures at 20, but wasnt diagnosed with epilepsy until 24 or 25. I cant remember..long story short, no seizure med worked for me ever, had my right temperol lobe removed because of an abnormality. I think i went about 2 or 3 months and didnt have any seizures but slowly started coming back. Had a VNS implanted, does nothing for me! I always hope it will 1 day though. Im on 3 different seizure meds now all at the highest doses, VNS at its highest setting and doing the medical cannabis and still I continue to have seizures every single day!!! About to do a clinical trial for Alprazolam inhaler. Its suppose to be used as a rescue drug. So we will see if that will do anything! Im thought about talking to my neuro about an RNS. Have wondered if that would help me any. I really thought the medical cannabis was going to be my cure since they talked it up so much and all about it curing "this and that"…helps me sleep, thats about it! And its expensive!! Oh i wanted to say (i forgot) that my short term memory is awful too!!! I cant remember a conversation i had 10 min ago, I have 3 boys and its very hard to remember them growing up, pictures help but not very much!! Like you I dont and cant remember going in labor with them, how they were being lil babies, just stuff like that and all you said. I hope things will get better for you, I will be thinking of you!! Good Luck with it all!!!

Liked by Leonard

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@chynex

Please does this drug, Keppra really prevent siezure?

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@chynex
I totally agree with @boston2mayo.
I have a friend in San Francisco who hasn’t had a seizure since he began it. I know other people who it doesn’t phase and some who discontinued it because of the mood side effects.
I hope it works for you if your on it or contemplating taking it.
Jake

Liked by boston2mayo, Julia

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@jakedduck1

@chynex
I totally agree with @boston2mayo.
I have a friend in San Francisco who hasn’t had a seizure since he began it. I know other people who it doesn’t phase and some who discontinued it because of the mood side effects.
I hope it works for you if your on it or contemplating taking it.
Jake

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Ok, thanks. My friend was taking it as a result of the seizure. And there was no side effects when he was taking it. Within the few months he took it, the seizure stopped. But when he finished the dosage, he couldn't buy another one and the seizure started again. I don't know if I should advice him to look for it again. Although is not easy to get the drugs, Keppra here in Nigeria.

Liked by Leonard

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@chynex

Ok, thanks. My friend was taking it as a result of the seizure. And there was no side effects when he was taking it. Within the few months he took it, the seizure stopped. But when he finished the dosage, he couldn't buy another one and the seizure started again. I don't know if I should advice him to look for it again. Although is not easy to get the drugs, Keppra here in Nigeria.

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@chynex
Phenobarbital is the most prescribed seizure medication in the world and the most affordable. It’s been around over 100 years. It would probably be easier to get than Keppra. Also it’s very dangerous to abruptly stop taking any seizure medication.
Jake

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@jakedduck1

@chynex
Phenobarbital is the most prescribed seizure medication in the world and the most affordable. It’s been around over 100 years. It would probably be easier to get than Keppra. Also it’s very dangerous to abruptly stop taking any seizure medication.
Jake

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Ok. Thanks

Liked by Leonard

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Hi – hoping to check in with some of you who have talked about seizures and surgery to see how things are going recently. I know that it helps all those who follow the discussion to hear about your experiences.

@menville – thinking of you today and wondering how things are going with your seizures? Are you still taking a high level of diazepam (Valium) to manage them?

@boston2mayo – how is your son doing lately? Does he continue to be seizure-free?

@lady35 – wondering if you are continuing with the highest doses of lamotrigine (Lamictal), zonisamide (Zonegran) and levetiracetam (Keppra)? I also remember you were hardly sleeping. Has that gotten any better?

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This week's member spotlight is for one of our most active members @jakedduck1. He's always willing to offer his support and share some laughs.

Transforming stigma to acceptance: Meet @jakedduck1
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/transforming-stigma-to-acceptance-meet-jakedduck1/

Liked by Leonard

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@menville

I am 41 years old and have all four types of seizures plus a plethora of other undiagnosed neurological complications and an extensive medical history that I have been studying and struggling with for many years now. I just got out of the hospital myself so please forgive me if this has been repeated. Please look at some older posts if this gets too complicated. I have part MS, ALS, Parkinson’s, an AUTO-Immunodeficiency as well as nine documented cases of Shingles b/4 I was 34 years old. I retired from my CEO position to explore why I couldn’t remember how to get home from my office (round trip was only 0.2 miles). After exhaustive testing, they found my neurological problems may have been an attempt at poisoning me and neurological-psychiatric Aptitude testing was showing a serious rapid decline in spacial awareness, recall, etc. when I had a photographic memory and was a very advanced child early on in life. My first seizures started as hallucinations but were triggered by motion…automobiles, etc. and we’re definitely tied to time of year. I was diagnosed very early on with some form of beta thalassmemia as my very young grandfather was simultaneously given two-weeks to live with an incurable form of leukaemia at the TIME. My family was large and all military service members so they’re WWI and WWII early deaths were just mistaken as part of their service and sacrifices for the US of A. My paternal grandfather 👴 fought his diagnoses as he had a grandson in Desert Shield 🛡 who would have his one and only daughter on Dec. 7th, 1990. This was significant as my grandfather and all his 15 siblings served in the US NAVY and five were actually at Pearl Harbor when Japan 🇯🇵 tried to invade the US. He was kept in an isolation room and dedicated his life to science. His two-three weeks gave us almost three years and he did get to see his great-granchild. His grandson continued his service and was watching over me when he passed away at 41…I am 41 today and trying my heart out to beat these problems and find a cure as well. The only way they’ve been able to manage my seizures is through a high level of Valium. I have several life-threatening injuries that have me in and out of Brain and Spinal Rehab programs. No other drugs worked so we’re using a bunch of older drugs off-label to manage my life. It’s taken me along time to reconcile with a one-day-at-a-time life and fighting ignorance at every turn. I have even been accused of being crazy because no one could possibly understand this in two minutes yet they still try and continue to try and reinvent the wheel when MAYO Clinic and I found a way to make it just a little easier every day. I have lost so many but care so much for those that are experiencing the same thing. I try hard to be available when possible. I know I digress so Keep Hope and understand that the lack of Dignity, Human Kindness and such as will never matter as long as you KEEP LOOKING UP as Michael J.Fox has written and said.

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Hi, @menville – wanted to check in with you and see how your health has been lately? Have you experienced any seizures recently? How are things going with your recall and spacial awareness you mentioned before had been declining?

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@chynex

Ok. Thanks

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Hi, @chynex – how are you doing? How is your friend and his seizures?

Liked by Leonard

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@lisalucier

Hi, @chynex – how are you doing? How is your friend and his seizures?

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I'm fine dear, thanks for your concern. He is better now. He has been free from seizures since he started taking phenobarbital. I thank God for that and I pray that he will continue to be free. Thanks once again.

Liked by Leonard

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@chynex

I'm fine dear, thanks for your concern. He is better now. He has been free from seizures since he started taking phenobarbital. I thank God for that and I pray that he will continue to be free. Thanks once again.

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What good news, @chynex!

Liked by Leonard, Julia

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