When You Were Told That Medication To Assist You, Did You Choose Surgery Or Alternative Solutions? How Well Did It Work For You? | MyEpilepsyTeam

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When You Were Told That Medication To Assist You, Did You Choose Surgery Or Alternative Solutions? How Well Did It Work For You?
A MyEpilepsyTeam Member asked a question 💭

I have heard in the past from several friends who have tried many others including surgery, implants or non-medication alternative methods. However, I think it would help if those of you who have to share your experience with those are now at the point where they have been told that medication will never allow them to reach a long-term seizure free state.

If Q + A section was better organized, then I would not have to ask this question, but we have a support site, so we have to do what we can… read more

posted December 1, 2022
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A MyEpilepsyTeam Member

I know that surgery comes with risks because I've had 5. I had a three-stage craniotomy in 2003. Most people usually have two stages, but the surgeon wasn't comfortable with taking out the internal EEG leads after the resection or second stage. So, we left them in for another week so they could make sure they got it all. One year later I needed a cranioplasty because my skull didn't fuse back. They replaced the dead bone with titanium mesh screwed into the surrounding skull and "spackled" over it with a polymer (or plastic) called methyl methacrylate. It is often used in bone surgeries. My doctors were unsure why the bone didn't fuse; however, I was a smoker & that can be a contributing factor. The fifth and last surgery wasn't brain surgery. It was to fix the methyl methacrylate fake skull. It had rippled and had deep ridges in places. They 'sanded' it and I was able to leave the same day. I needed the surgery because my complex partials were occurring too frequently. www.kerricroake.com I have written two books about my epilepsy journey and am in the middle of writing the third. I've had epilepsy for 30 years. I do not regret surgery or the changes that the brain has and will always make when it tries to connect neuronal pathways. I still have seizures and take 5 different meds three times a day. When it comes to insurance companies the hospital will take care of talking to them for approval. Patient advocates are always available if you need them to be your voice. And yes, I would do it all over again because helped to lessen the frequency and intensity of my seizures.
GOOD LUCK TO YOU AND EVERYONE READING MY STORY.

posted February 2, 2023
A MyEpilepsyTeam Member

I chose surgery in 2004 and had a handful of seizures in 2005 followed by one in 2010, one in 2011, I started with Vimpat in 2012 and I’ve been seizure free since then.

posted January 15, 2023
A MyEpilepsyTeam Member

Once they hospitalized me and changed my med to Topomax Voila new me woo hoo

posted February 15, 2023
A MyEpilepsyTeam Member

Okay.. I need to put my own thoughts on this one.. Vagus Nerve Stimulator is different for everyone. Just as a person reacts different to a medication he or she will do the same in surgery. I've been through the VNS surgery in 2008 because it was needed the seizures started going down quite well unfortunately they came back so in 2011 I went through the Deep Brain Surgery well before it was approved for Epilepsy patients because we felt it was the best thing to do since I was having 4 to 5 seizures a day. The combination of the DBS and the VNS work very well for my case.
As I stated earlier, every person is different.

posted February 6, 2023
A MyEpilepsyTeam Member

Surprisingly enough I had NO trouble getting procedure approved by insurance companies. I figure by now I have cost at LEAST 5 million in medical bills between the initial encephalitis 11yrs ago bringing seizures into my world, random Emergency Room Visits, medications and a fight with squamous cell carcinoma 6 yrs ago they see me come across and say "OH IT'S HER AGAIN". I had a nice fight with Bacterial Meningitis and Kidney failure resulting in dialysis thrown in there as well. I am one TIRED woman. But hey the sun is shining

posted February 1, 2023
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