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mmaryemc
@mmaryemc

Posts: 10
Joined: Aug 15, 2018

Seizures and surgery

Posted by @mmaryemc, Mon, Oct 15 9:47am

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?

REPLY

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.

I'm sorry. I thought I was starting a different conversation. I'm not quite sure how to do this.

@mmaryemc

I'm sorry. I thought I was starting a different conversation. I'm not quite sure how to do this.

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Try to find one of the Mayo Clinic counslers or moderator who decide on which messages go out and those that are not allowed. My experience is that some messages are moved to a different category than that which the writer believes was the one where they can get the most input, useful and helpful information.

Hi @lethargic, Mary's message is posted correctly. She started a new discussion in the Epilepsy & Seizures group, specific to her questions about surgery and other treatment options. You received an email notification about this newly started discussion because you are following the Epilepsy & Seizures group. Her questions are directed to everyone following the group, not specifically to you. Click the group here https://connect.mayoclinic.org/group/epilepsy-2bb359/ and you will see a variety of topics related to Epilepsy. If you wish to receive notifications about Keppra only, then unfollow the Epilepsy group, but follow the Keppra discussion. See more tips about How to Use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

@mmaryemc, as mentioned you did start a new discussion. I was reviewing your past posts, but didn't see anywhere how old your granddaughter is. How old is she?
This must be so difficult for your family. I'd like to bring others into the conversation who know a bit about what you are going through. @patrassi can share about the surgery her son had and what things were considered to help her and her doctors make the treatment decisions. Also meet @sarahlou, who's son had one surgery, but decided not to have the second surgery that was proposed as an option.

Mary, is it a tumor that they are proposing to remove from her brain or actually a part of her brain?

Thank you so much. It's very nice to have someone actually seem to hear me and have some advice. One of my posts was posted as "My grandaughters seizures. HELP!!" I posted it on September 17. My granddaughter is 14 years old . The Drs want to actually remove a golf ball-sized PART of her brain. It's not a tumor they just think that's the part of the brain where the seizures are coming from. I'mm having a hard time even conceiving this idea.

@mmaryemc
Hello Mary,
Obviously I’m not a medical person however I’ve had severe Epilepsy for 51 years and have also been put into induced comas at least 8 times. I was having from 1-12 mostlyTonic Clonic but also, Status, Focal and Absence seizures a day for 44 years. Although I’ve had over 10,000 seizures for so many years, I am so very grateful to my parents for not allowing the doctors to operate on my brain.
I am 65 years old and have been a member of numerous Epilepsy forums, read many research papers at various medical libraries and have run computer searches at medical university hospitals on different Epilepsy subjects.
Living with seizures was not always easy but I will never let doctors operate on my brain. Of course that’s my choice and based on my situation.
Admittedly there has been a lot of progress made in Epilepsy surgery and I know people who have benefited from it and some who have died. I had a friend I loved very much who died on his driveway from an episode of Convulsive Status Epilepticus. and a 17 year old girl I knew died from SUDEP and others.
I know your decision is a terrifying one and one you may not know what the right answer is until she either stops having seizures or suffers irreversible damage or God forbid doesn’t make it.
If I had a 14 year old child I would let her get older unless that’s not a viable option. Has she been brought out of her coma yet.
I was told by Neurologists and Neurosurgeons I had intractable Epilepsy, they were wrong. My parents were told I would probably be in a coma a good part of my life, wrong again. Although I was in a coma a number of times. But no doctor can predict if or when a seizure will occur, what type it will be or how long it will last.
In my opinion doctors are too anxious to operate. I certainly would make sure they knew exactly where ALL the seizure activity was. A parent had half their child’s brain removed at Mayo. The child is still having seizures but a different type. I don’t think anyone should put doctors on a pedestal like his parents did and think they have all the answers. When it comes to the brain there still is far more we don’t know than what is known.
I assume your granddaughter is being followed by an Epileptilogist? Also is she being treated at a level 4 Epilepsy center?
My heart goes out to you all.
God Bless you all.
Jake

@colleenyoung

Hi @lethargic, Mary's message is posted correctly. She started a new discussion in the Epilepsy & Seizures group, specific to her questions about surgery and other treatment options. You received an email notification about this newly started discussion because you are following the Epilepsy & Seizures group. Her questions are directed to everyone following the group, not specifically to you. Click the group here https://connect.mayoclinic.org/group/epilepsy-2bb359/ and you will see a variety of topics related to Epilepsy. If you wish to receive notifications about Keppra only, then unfollow the Epilepsy group, but follow the Keppra discussion. See more tips about How to Use Connect here: https://connect.mayoclinic.org/get-started-on-connect/

@mmaryemc, as mentioned you did start a new discussion. I was reviewing your past posts, but didn't see anywhere how old your granddaughter is. How old is she?
This must be so difficult for your family. I'd like to bring others into the conversation who know a bit about what you are going through. @patrassi can share about the surgery her son had and what things were considered to help her and her doctors make the treatment decisions. Also meet @sarahlou, who's son had one surgery, but decided not to have the second surgery that was proposed as an option.

Mary, is it a tumor that they are proposing to remove from her brain or actually a part of her brain?

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I have no problems with Mary's post. If you study my most recent post, my objective was to try to empathiize with Mary by saying how badly I felt for what she is going through and how much I hope her granddaughter achieves some quality of life.
I was referred by one of your moderators, Ethan McConkley to join a more limited group about Keppra. Because there are so many stories about families dealing with epilepsy or their caregivers, I was attracted to Connect by those who focused on a narrow subject about Keppra. This does not mean that I am not interested in all posts.
If I am further criticized in the future, I will disconnect from Mayo Connect and the many who have liked my posts might be disappoined.

@lethargic

I have no problems with Mary's post. If you study my most recent post, my objective was to try to empathiize with Mary by saying how badly I felt for what she is going through and how much I hope her granddaughter achieves some quality of life.
I was referred by one of your moderators, Ethan McConkley to join a more limited group about Keppra. Because there are so many stories about families dealing with epilepsy or their caregivers, I was attracted to Connect by those who focused on a narrow subject about Keppra. This does not mean that I am not interested in all posts.
If I am further criticized in the future, I will disconnect from Mayo Connect and the many who have liked my posts might be disappoined.

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My apologies, @lethargic. My intent was not to criticize but to give guidance as to how you can tailor your preferences to receive notifications about the topics you are interested in on Connect. If you have further concerns or wish to discuss further, please send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

It is really sorry that your granddaughter isn’t better.
My son had a surgery at Mayo Clinic in February 2017, hemispheretomy .He has now just a half of his brain and he is the same child he used to be before surgery . He has a normal development to his age (8 years) , right hemiparesis and he lost his size views . His seizures don’t stop, but it has changed… he is taking medicines daily ( Keppra and Oxcarbazepine), and we have to return to Mayo Clinic for another surgery… it’s very scary. We thought he would be seizures free after all , but it doesn’t happen.
We are afraid that another surgery would be dangerous and I really understand your feelings, but you have to decide about her life and if this surgery will be necessary to bring her back … maybe it’s her chance.
It was not easy for us to decide it, But we were so scared about losing him …
I am sure you will do the best for her !
With best wishes
Patrícia

@mmaryemc
Hello again, if you read the post above you can see another example of unforeseen consequences of brain surgery. Doctors cannot predict these occasional and potentially grievous complications. Did your granddaughter have Epilepsy prior to this episode? Did she have any acute or chronic disease? Was she in an accident or other trauma?
I imagine Hypothermia and Steroids have already been tried. Do you know which anesthesia she’s being given?
I believe you mentioned your insurance won’t pay to move her to another facility. If so, were it me, I’d file an appeal or a grievance not sure which is correct but I’d get legal help in moving her to a level 4 Epilepsy center where her Super Refractory Status Epilepticus may be treated with more specialized care.

Hi! I had my right temperol lobe removed in 2011 because of an abnormality. Have a VNS as well, which doesnt help but would like to think it does. I am still having seizures. I havent had a gran mal seizure since that surgery but I feel like my seizures are slowly becoming more frequent and am scared and worried that I will have a gran mal seizure anytime. Im having complex partials and absence seizures now. I also downloaded a seizure app on my phone so that when I go see my Neuro I can show her when and how often. It helps her see how many im having. On 2 seizure meds at the highest dose and my VNS settings are set pretty high as well. Good luck to you and your granddaughter!!

@crstyday40 – I'd like you to meet and hear about the stories of members like @mmaryemc, who has a granddaughter for whom doctors are considering surgery to stop her seizures; @jakedduck1, who has had over 10,000 seizures and not had surgery for his epilepsy; @ndapanda, whose daughter had a modified hemispherectomy; @robertjr, who has shied away from brain surgery; and @patrassi, whose son had a hemispherectomy and now may have another surgery.

You mentioned having your right temporal lobe removed in 2011. Do you feel that you would select this surgery again? Recommend it to others?

@lisalucier

@crstyday40 – I'd like you to meet and hear about the stories of members like @mmaryemc, who has a granddaughter for whom doctors are considering surgery to stop her seizures; @jakedduck1, who has had over 10,000 seizures and not had surgery for his epilepsy; @ndapanda, whose daughter had a modified hemispherectomy; @robertjr, who has shied away from brain surgery; and @patrassi, whose son had a hemispherectomy and now may have another surgery.

You mentioned having your right temporal lobe removed in 2011. Do you feel that you would select this surgery again? Recommend it to others?

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I would recommend it, for it has helped with me not having a gran mal since my surgery. My only problem now is my memory is getting worse with every complex partial i have, which has been daily with sometimes having up to 6 seizures. I dont know if i mentioned before that i have another abnormality on my hippocampus, which i was told cannot be removed. So im always wondering if it can get worse or spread to other parts of my brain, especially since ive been having them every single day now. But, I also fear what if they get bad again and I start having gran mal seizures. So scared its just a matter of time. I dont regret having the surgery at all. Good luck to anybody thinking about doing the surgery!!!

@crstyday40

Sorry to hear about your multiple Focal Impaired seizures. Did your seizures change from Tonic Clonic to Focals after your surgery? How many were you having before surgery. I believe Focal Impaired seizures may be more hazardous than Tonic Clonic as far as accidents are concerned. At least when someone has a Tonic Clonic seizure they go down where they are and the dangers are usually less provided your not engaging in a dangerous activity. (Bathing, swimming, biking, driving etc.) Have you considered using the Response Neurostimulation system for your seizures? You might ask your doctor about drug-gene testing also called pharmacogenomics to find the most effective AED.
Hoping your seizures settle down,
Jake

Sorry to hear about your grandaughter. My son had laser ablation surgery in July 2018. Although time will tell whether the surgery has been a success, so far so good. I believe it is a good thing your grandaughter can be a candidate for a surgery. Is she still in a coma?

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