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patrassi
@patrassi

Posts: 21
Joined: Mar 12, 2017

Insula Surgery for Epilespy – What can I expect?

Posted by @patrassi, Wed, Jun 13 9:08am

Hello! My son had left hemispherotomy at Mayo in February 2017, and he is having seizures. We were not expecting for that… and now the doctors told us he must have another surgery, in the deepest part of his brain , insula cerebral. I have never listened about it. Does anyone knows anything about it?

REPLY

Most importantly how many seizures is your son having? How many seizures did he have before the hemispherotomy? How many AED’s has he been on? How many different combinations of AED’s and over what period of time?

@jakedduck1

Most importantly how many seizures is your son having? How many seizures did he have before the hemispherotomy? How many AED’s has he been on? How many different combinations of AED’s and over what period of time?

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Also, what type of seizures does your son suffer from?

@jakedduck1

Most importantly how many seizures is your son having? How many seizures did he have before the hemispherotomy? How many AED’s has he been on? How many different combinations of AED’s and over what period of time?

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@jakedduck1 Hello!
Before his first surgery, he had tonic clonic seizures, and it happened about 7 or 8 times a year, but they were really severe. It lasted about 20 minutes and he always became purple and needed hospital assistence. After surgery he started to have partial seizures that lasts about 1 minute, but it has happened once a month, and sometimes 9 per day. He takes 2 medications twice a day, Trileptal and Frisium. He also had taken Keppra , Depakene, Topiramato ….

@jakedduck1

Most importantly how many seizures is your son having? How many seizures did he have before the hemispherotomy? How many AED’s has he been on? How many different combinations of AED’s and over what period of time?

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This post is based only on what you have shared so far. I mean no disrespect however to me any doctor who recommended such a drastic surgery made a very irresponsible decision if only based on the seizures you describe. Brain surgery itself often causes seizures so you shouldn’t be so shocked he’s having Focal seizures now. Didn’t you have emergency medicine for your son after his seizures lasted so long? My parents gave me meds after I seized so long. Was your sons left hemisphere not fully functional or was it removed based solely on the seizures you described?

The insula plays a role in cravings, eating, distinguishing good food from rotten, pain, anticipating pain, empathy with others, listen to jokes, music, among numerous other things that are known about. But what about what is not yet known and the complexities of how and why it interacts with other parts of the brain. Researchers now believe the mind and body are integrated in the insula. It provides unprecedented insight into the anatomy of human emotions.
It was once believed the Insula only played a part in eating and sex. Much has been learned since and continues to be learned.
Many now believe that rational thinking cannot be separated from feelings and emotions. The insula plays a major role in this function.
Neuroscientist, Arthur D. Craig at the Barrow Neurological Institute in Phoenix, went on to describe exactly the circuitry that connects the body to the insula.
According to Dr. Craig, the insula receives information from receptors in the skin and internal organs. Such receptors are nerve cells that specialize in different senses. Thus there are receptors that detect heat, cold, itch, pain, taste, hunger, thirst, muscle ache, visceral sensations and so-called air hunger, the need to breathe. The sense of touch and the sense of the body’s position in space are routed to different brain regions, he said.
All mammals have insulas that read their body condition, Dr. Craig said. Information about the status of the body’s tissues and organs is carried from the receptors along distinct spinal pathways, into the brain stem and up to the posterior insula in the higher brain or cortex.
As such, all mammals have emotions, defined as sensations that provoke motivations. If an animal is hot, it seeks shade. If hungry, it looks for food. If hurt, it licks the wound.
Removing this vitality important structure, especially when the other has already been removed should require long and carful thought. My seizures were also severe, more so than what you have described. I also required medical intervention and have been put into an induced comas on numerous occasions. Also did you check into VNS? One of my former neighbors new a boy with who was having over 100 seizures a day and he went to a Neuro Chiropractor and now he is seizure free. There are other alternative therapies that sometimes work, from diets to vitamin therapy to implants and more that sometimes control or reduce seizures before engaging in risky dangerous surgery, often with unknown and unexpected complications.

@jakedduck1

Most importantly how many seizures is your son having? How many seizures did he have before the hemispherotomy? How many AED’s has he been on? How many different combinations of AED’s and over what period of time?

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All the decisions we have done about my son surgery was based in the knowledge of the best doctors I’ve had ever known , the Mayo doctors neurologists, so I am pretty sure it was not an unresponsive act . We will soon return to Mayo to have some appointments with his doctors to have the best treatment for him again. Thank you for your reply.

Hi @patrassi
I'm just catching up with this discussion. It must be hard to hear that your son requires another surgery. Since first posting about this new surgery to the insular cortex have you been given more information about what to expect?

@patrassi
I certainly hope you have researched the severity of what your planning to do to your son. If you have even the slightest amount of love for your son you will stop this lunacy as should his doctor. You and his doctors refuse to give your son a chance for his seizure to change or even perhaps stop. I have have had over 13,000 seizures and have been put into a coma at least 10 times and doctors at Stanford University Hospital in California told my parents I’d continue to have seizures till I died. They were wrong, my seizures have stopped. No one knows why and I don’t care. I m just grateful they stopped. My parents had the intelligence to refuse to let the doctors do any type surgical procedure to my brain. My parents did unending research on Epilepsy prior to the internet. They went to Universities Medical research libraries and talked to many experts from around the world. I thank God and my Mom everyday for not allowing the doctors to experiment and dissect my brain. Perhaps you and your husband are just ignorant but if you continue on your current path of destruction then you both must be insane. Doctors are not Gods, they are not always right, they make Indeterminable mistakes. I could tell you horror stories from Epilepsy surgeries. Sadly your on a road of destruction that your son may never fully recover from. Perhaps then your conscience may kick in. Knowing you refused to give him the chance or pursue other less invasive procedures he deserved. Surgery is ALWAYS a last resort. You still have a chance to do the right thing. Please give your son the chance he deserves.

all I can say is that I didn't have Brain Surgery due to the fear of this situation Like Leonard says doctors are not Gods they are only practicing on us that is why a doctor is in practice.

@patrassi

All the decisions we have done about my son surgery was based in the knowledge of the best doctors I’ve had ever known , the Mayo doctors neurologists, so I am pretty sure it was not an unresponsive act . We will soon return to Mayo to have some appointments with his doctors to have the best treatment for him again. Thank you for your reply.

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Hi, @patrassi – wanted to check in with you to see how your son is doing and how you are doing, as well.

I also wanted to bring in a few other members who've talked about epilepsy into this conversation, like @mmaryemc @suellipo68 @hermsenk @ndapanda and @dawn_giacabazi.

When will he have his surgery, and how are you feeling about it?

@lisalucier

Hi, @patrassi – wanted to check in with you to see how your son is doing and how you are doing, as well.

I also wanted to bring in a few other members who've talked about epilepsy into this conversation, like @mmaryemc @suellipo68 @hermsenk @ndapanda and @dawn_giacabazi.

When will he have his surgery, and how are you feeling about it?

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Hi Lisa!
Thank you for your attention! My son is better this week, he restarted Keppra and the seizures have stopped for some days and we hope it lasts.
We will return to see his doctors in Rochester in January and we are really concerned about it.
First he is going to have some tests done at Mayo Clinic. Those tests have already been done here in Brazil, but they would like to have it done in their hospital.
Dr Wong , his brilliant neurologist, called us last month and said we will have to go , and maybe another surgery at insula would happen , according to his results.
I am scared ! We are providing money and courage to return.
We don’t know what to do.
With best wishes
Patrícia

@patrassi

Hi Lisa!
Thank you for your attention! My son is better this week, he restarted Keppra and the seizures have stopped for some days and we hope it lasts.
We will return to see his doctors in Rochester in January and we are really concerned about it.
First he is going to have some tests done at Mayo Clinic. Those tests have already been done here in Brazil, but they would like to have it done in their hospital.
Dr Wong , his brilliant neurologist, called us last month and said we will have to go , and maybe another surgery at insula would happen , according to his results.
I am scared ! We are providing money and courage to return.
We don’t know what to do.
With best wishes
Patrícia

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Hello, @patrassi. Good news that your son is better this week and no seizures for some days.

With your return visit and a potential insula surgery in mind, what would you say about his visit or this particular surgery is making you feel most scared, @patrassi?

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