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

@jakedduck1 Thank you! Before my surgery i was having 20-40 complex partial seizures daily. And 1 or 2 gran mal a year. About 3 months after my surgery I started having the partials and now absence about twice a month, then just over the years they have slowly become more frequent. Even with me doing the medical marijuana and on 2 seizure meds they are just happening daily again. I have wondered about the RNS and would consider getting it. I havent talked to my neurologist about it yet. I feel its worth a try. Especially since the medical marijuana isnt helping at all!!! Have been reading all about it and at this point Im desperate for help! My husband thinks since im not using the bathroom in myself that i should be thankful for the seizures im having now and how they are not nothing like before. And im very thankful but at the same time the auras and the ones im having now are still scary and my anxiety is through the roof!!! I definitely dont drive, was working before all this but im a stay at home mom now. I had asked a question on drugs.com about the medical marijuana not helping my seizures and if anybody else was using it and it not helping and my question was deleted. I feel like it was deleted because it seems that everybody is all about the medical marijuana helping this and helping that and hopefully it does for alot of people but i think its a joke and people are just making tons of money off of it!! Thays just my opinion of course!

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Hi. My son was diagnosed with epilepsy at the age of 9. We went through an extremely difficult time at Boston Children’s Hospital. The were literally scratching their heads. Their only course of action was to keep trying different drug cocktails. His side effects were to most of the meds were horrendous. We finally found help at the Mayo Clinic in Rochester, MN. They knew right away what to do. My son had brain surgery at the age of 10. They removed a section of his brain they said was about the size of his fist. They made no guarantee that he would be seizure free, but it’s been 8 years and he’s been seizure free since the surgery and is doing well.

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Hi! My son also had surgery at Mayo in February 2017 and today we are here at Rochester Saint Mary’s Hospital and he is having another video eeg monitoring. It’s not easy at all, but we have to decide what is going to be his next step, although he continues having spells. Maybe another surgery will be necessary. We are really afraid!
But we will continue hoping he will be fine…

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@boston2mayo

Hi. My son was diagnosed with epilepsy at the age of 9. We went through an extremely difficult time at Boston Children’s Hospital. The were literally scratching their heads. Their only course of action was to keep trying different drug cocktails. His side effects were to most of the meds were horrendous. We finally found help at the Mayo Clinic in Rochester, MN. They knew right away what to do. My son had brain surgery at the age of 10. They removed a section of his brain they said was about the size of his fist. They made no guarantee that he would be seizure free, but it’s been 8 years and he’s been seizure free since the surgery and is doing well.

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@boston2mayo
Welcome!!!
I’m glad his surgery was a success. My parents refused to allow surgery and I’m so grateful. It’s a gamble. It might have worked then again???
What type seizures did he have? What part was removed? Is he off medication?
Health & Happiness & Happy New Year,
Jake

Liked by menville

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@jakedduck1

@boston2mayo
Welcome!!!
I’m glad his surgery was a success. My parents refused to allow surgery and I’m so grateful. It’s a gamble. It might have worked then again???
What type seizures did he have? What part was removed? Is he off medication?
Health & Happiness & Happy New Year,
Jake

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Thanks Jake. Part of the left frontal lobe was removed. My son was at high risk of SUDEP and didn’t respond to medication. We’re convinced if we continued care in Boston that my son would be severely affected if not worse. The doctors at Mayo were completely baffled by what the BCH doctors were doing. It was a very difficult decision to have surgery. Yes it was a gamble but we were fighting for his life. He is off medication.

Liked by menville, Leonard

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@patrassi

Hi! My son also had surgery at Mayo in February 2017 and today we are here at Rochester Saint Mary’s Hospital and he is having another video eeg monitoring. It’s not easy at all, but we have to decide what is going to be his next step, although he continues having spells. Maybe another surgery will be necessary. We are really afraid!
But we will continue hoping he will be fine…

Jump to this post

I'm thinking of you and your family, @patrassi. It's not an easy decision you face, but I'm confident that you and the expert team at Mayo Clinic will weigh the options carefully and make the decision that is needed for your son. Good luck with the monitoring. Remember the feedback that you and other Connect members gave to the nurses at the monitoring unit here? https://connect.mayoclinic.org/discussion/been-to-an-epilepsy-monitoring-unit-whats-it-like/ They are very compassionate even more so having heard feedback from parents and patients.

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Hi – several of you have talked about avenues you are pursuing – surgical or otherwise – for seizures you or a loved one has been coping with. It would be great to hear how things are going, and I'm sure others will benefit from reading about your experiences.

@patrassi – how have things have gone with your son's monitoring and your visit with the doctors so far?

@crstyday40 – how you are doing? Did you end up talking to your neurologist about the possibility of a responsive neurostimulation device (RNS)?

@mmaryemc – how is your granddaughter? How have things gone with the seizures she was having?

Liked by menville, Leonard

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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

Liked by menville, Leonard

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HI @lady35 and welcome to Connect. Thank you for sharing your story! It must be so relieving to have found some relief from the surgery.

I think your story would be something that @jakedduck1 @crstyday40 @boston2mayo and @patrassi would love to hear.

Have you been feeling any side affects from the heavy doses of medicine?

Liked by menville, crsty40

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@ethanmcconkey

HI @lady35 and welcome to Connect. Thank you for sharing your story! It must be so relieving to have found some relief from the surgery.

I think your story would be something that @jakedduck1 @crstyday40 @boston2mayo and @patrassi would love to hear.

Have you been feeling any side affects from the heavy doses of medicine?

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@ethanmcconkey
I'm 35 started when I was 15, I've been on every epilepsy medication these were the last 3 I had never been on and still none work alone. Lamictal gives me a rash at 200mg 2x daily and higher but I can take lower doses, I'm on 150 instead and feel the rash but barely noticeable they really want me to stay on it if I'm willing. I personally don't have any side effects of any other medication but no benefits either, they don't help prevent migraines, seizures, etc. Making me drowsy would nice since I seemed to only be able to sleep because I was having frequent seizures during sleep now due to the surgery I almost never sleep because I'm not having as many even with ambien. I've been a difficult case 4 different seizures types, 3 different hospitals as I grew the seizures did too

Liked by menville, Leonard

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@colleenyoung

I'm thinking of you and your family, @patrassi. It's not an easy decision you face, but I'm confident that you and the expert team at Mayo Clinic will weigh the options carefully and make the decision that is needed for your son. Good luck with the monitoring. Remember the feedback that you and other Connect members gave to the nurses at the monitoring unit here? https://connect.mayoclinic.org/discussion/been-to-an-epilepsy-monitoring-unit-whats-it-like/ They are very compassionate even more so having heard feedback from parents and patients.

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Dear @colleenyoung , sorry for not answering at time, it was really difficult the last days. My son had his video EEG done and some MRI and Spect.
The Mayo doctors told us he will need another surgery… but it is a really unique procedure , that was never done at Mayo Hospital.
So, in February, they are going to discuss his tests in a neurosurgeon meeting in Rochester and then , at the end of the month they will call us …
I don’t know if I would have courage to submit him another procedure…
They increased his medication a lot.
We are waiting …

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@patrassi

Dear @colleenyoung , sorry for not answering at time, it was really difficult the last days. My son had his video EEG done and some MRI and Spect.
The Mayo doctors told us he will need another surgery… but it is a really unique procedure , that was never done at Mayo Hospital.
So, in February, they are going to discuss his tests in a neurosurgeon meeting in Rochester and then , at the end of the month they will call us …
I don’t know if I would have courage to submit him another procedure…
They increased his medication a lot.
We are waiting …

Jump to this post

@patrassi
Has his seizures improved any since surgery? If you decide
If you decide to have this procedure done, if it were me I’d scour the Country for a surgeon who has experience with this procedure. I believe Mayo has an excellent rating and good doctors but I also feel
there is no substitute for experience. I would think you are, (or should be) held to a higher standard in authorizing medical treatment for a child than for yourself. I wouldn’t consent to surgery based on hope. You have to very seriously consider the negative consequences that may occur, like the last time. Have all other options been absolutely ruled out? Have you discussed RNS or DBS? There is also treatment available in Canada that's not approved here. Might want to check it out or ask Mayo about it.
Living with seizures in my opinion is less risky than brain surgery. I had seizures nearly every day from 15-59.
Have realistic expectations.
Good 👍 luck,
Jake

Liked by menville, Julia

REPLY
@jakedduck1

@patrassi
Has his seizures improved any since surgery? If you decide
If you decide to have this procedure done, if it were me I’d scour the Country for a surgeon who has experience with this procedure. I believe Mayo has an excellent rating and good doctors but I also feel
there is no substitute for experience. I would think you are, (or should be) held to a higher standard in authorizing medical treatment for a child than for yourself. I wouldn’t consent to surgery based on hope. You have to very seriously consider the negative consequences that may occur, like the last time. Have all other options been absolutely ruled out? Have you discussed RNS or DBS? There is also treatment available in Canada that's not approved here. Might want to check it out or ask Mayo about it.
Living with seizures in my opinion is less risky than brain surgery. I had seizures nearly every day from 15-59.
Have realistic expectations.
Good 👍 luck,
Jake

Jump to this post

Thank you for your attention and advices. I will never approve another procedure in my son without absolute certainty… I don’t know if I would approve at all …
we are waiting for his tests results.

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@lisalucier

Hi – several of you have talked about avenues you are pursuing – surgical or otherwise – for seizures you or a loved one has been coping with. It would be great to hear how things are going, and I'm sure others will benefit from reading about your experiences.

@patrassi – how have things have gone with your son's monitoring and your visit with the doctors so far?

@crstyday40 – how you are doing? Did you end up talking to your neurologist about the possibility of a responsive neurostimulation device (RNS)?

@mmaryemc – how is your granddaughter? How have things gone with the seizures she was having?

Jump to this post

@lisalucier Im just now seeing where you asked if I have talked to my neuro about the RNS. I apologize for the late response. I havent yet. When I went to get my botox injections for my migraines, I brought it up but she said I would need to make an appointment to discuss that…she was in and out, so next visit I will for sure! I will let you know what she says!! Thank you!!

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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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