Friday, July 1, 2016

NeuroPace RNS Surgery: Half of My Life

I began having seizures when I was 19.  I turn 38 this October.  I realized a few days ago that I have been dealing with epilepsy for half of my life.  19 years ago when I had my first Grand Mal seizure in the cafeteria of BYU-Idaho, I had no idea that so many years later it would continue to control my life.

If you're unaware of my epilepsy history, you can read here to get caught up.  From this article there are many links to past blog posts regarding my story.  (There are also many other fun blog posts from when I did this MUCH more frequently!)

About a year ago, I was meeting with my neurologist when she told me about a new procedure called RNS (responsive neurostimulation).  It's very difficult to understand, so here's a video describing the procedure.






My initial reaction to this was "OVER MY DEAD BODY".  The LAST thing I wanted to subject myself to, was actual brain surgery.  The RNS is very similar to the VNS device that I currently have.  Sure, I've had the VNS surgeries, but this is way more than making a small cut into my chest.  RNS surgery is opening up my entire head!  That was all I had wanted to hear about this procedure and the subject was dropped.

I had my VNS device replaced in November, 2013.  Since that time, my seizures have continued, and even increased.  The VNS device, and many medications I've taken, are proving to no longer work.  The time had come to find something else that would help restore me to a "normal" life.  Our attention focused once again on the RNS surgery.  We received more information from my doctor, and were told that the results from this procedure were changing lives, for the better.  There was a DRASTIC decrease in the amount of seizures these patients were having, and our thoughts were that if those who were having hundreds of seizures a month were now only have 20 - 30 each month, then it should work wonders for me.  On average, I have between 10 - 15 each month.  We decided to begin doing the required tests that would determine if I was even a candidate for this surgery.

An MRI I had in December showed us that my seizures were changing.  Instead of coming from the same side of my brain that they've been coming from for the past 19 years due to the malformation inside my brain, they are now coming from many different places.  We had no idea that seizures could do this, so we were caught off guard, and a little startled by this.  For the past year my seizures had begun changing.  Usually if I had a seizure, it would be the only one I'd have that day.  Now when I have one, it's almost a guarantee that I'll have at least 2 more during the same day.  The last seizure I had took me nearly 30 minutes to completely recover from.  The tests showed that I was a candidate for the surgery.

We met with the neurosurgeon in March to get as much information as possible, and to get answers to many questions:

1- What is the next step?
A procedure called Depth Electrode Placement would need to be done.  I would be admitted into the ICU and have surgery where 10 - 15 electrodes would be placed on different parts of my actual brain and make a map showing where my seizures are coming from, so that the doctor could know exactly where the RNS needs to be implanted.  This means there would be holes drilled into my skull so the electrodes could go onto my brain.

2- How long does the procedure last?
I will be taken off all my seizure medication, stuck in a hospital bed, unable to leave it for ANYTHING; no shower, walking around to stretch, getting up to use the restroom; NOTHING until the doctor has seen 3 or 4 seizures that will provide them with the information they need to more accurately place the RNS.  So basically, we have no idea how long I'll be stuck in that bed, unable to get up.  They make you stay in bed because they are also video taping me so they can see my seizures. More often than not, a patient will have seizures while they're not in the bed...defeating the entire purpose of the person being there!  Realizing that every hour spent in the ICU will cost THOUSANDS of dollars, the hope is that once I'm taken off my medication I will begin having seizures very quickly!



Based off of pictures on Google, I believe this is what the depth electrode placement portion of the surgery will look like.  This picture also helps me understand why I won't be allowed to get up.  It looks like it wouldn't be very easy!!

2- Will I loose my hair?
The doctor says that since I have long, thick hair I won't have to have my head shaved.  He believes that I should be able to comb my hair over the holes that he says are very tiny.  I am more skeptical about this. There are only so many ways you can do a "comb over" before it simply becomes ridiculous; so we'll see. When I first heard this, I wanted to die.  Who wants to loose all their hair?


This is a picture from Google when I searched RNS surgery.  There were many like this and it's why I believe it's very possible that I might loose my hair.  I've grown used to the idea and have decided that if I do loose my hair, I'll buy the coverings that chemotherapy patients wear.




My neurosurgeon told us that all the patients he's done this on have had no issues having the surgery approved by their respective insurance companies, and I was put on the schedule for July 5th.  They wouldn't go for approval until a month before, so it became a waiting game.

After calling the insurance company each week in June (I'm a squeaky wheel!), the decision came out last Friday (which was also my wedding anniversary) that the insurance company had DENIED my surgery. After spending MONTHS mentally preparing for this, having friends put in place to watch Brandon while I was in the hospital, and having Nick request work off, it was over...just like that.  Doing EVERYTHING I could not to obviously cry on the phone, I asked what my options were now.  I could write a letter appealing the decision and request a peer to peer meeting where my neurosurgeon would specifically talk to a doctor from my insurance company and plead my case.  Why this isn't done to begin with is beyond me!  Three different time slots were allotted for the peer to peer meeting, and I was told it could take MONTHS for a final decision to be made.  I spent the next hour in uncontrollable tears.  Not only was I not able to have the surgery during the summer, which meant not missing work, and making the process much easier for my family and I, but I might not even have it done at all!

Not willing to give up, and with my mom's help reminding me about all the issues I've had over the years (because my memory has been GREATLY effected by all of my seizures ) I wrote and faxed this letter to the appeals department 2 hours after the decision came out last Friday.


My name is Wendy Toale. A decision came out today to deny the multiple procedures my neurosurgeon has asked for because “deep brain stimulation is medically unproven to be helpful”, which is the quote I was given regarding the denial as read to me by a United Healthcare worker. Do you realize that deep brain stimulation is needed before a Responsive Neurostimulator (RNS) can be properly, SAFELY installed into the brain?

I have suffered from epilepsy for almost 20 years and it has COMPLETELY taken over my life. I’m almost 38 years old and have no independence. Where I work dictates where we live since I rely on others for everything I have to do in my life. Epilepsy has taken away my livelihood. I spent thousands of dollars to obtain my teaching credential, but no one will hire me to teach in a classroom alone. I am now a teacher’s aide making less than half of my potential, without medical insurance, vacation pay, and not even earning money towards retirement; all things that people find crucial to their survival in life. 

Discrimination is a constant for me. I live each day in fear, wondering when the next seizure will happen, and where I’ll be when it does. It is humiliating. I can’t sing, or perform on the piano in public anymore because I never know when a seizure is going to hit. My son has had to watch his mother have seizures. I am supposed to be his protector. Instead, he’s ended up having to grow up much more quickly, and has in many ways become my protector. I'm also unable to safely have any more children due to the harmful side effects of all the medication that I'm on.  

I’ve had seizures where I walk away from people in the middle of conversations with them. They don’t understand why I walked away, and it makes me look like a horribly rude person. Search parties have been sent out to look for me on a number of occasions because I’ve gone walking off during a seizure.  Every time I have a seizure, brain cells die.  I suffer from debilitating migraines, and we’ve discovered that my seizures are now coming from different parts of my brain, which is very disturbing.

I have been on many different medications that have all failed. I’ve had a Vagus Nerve Stimulator implanted. For 6 incredible years it worked, making me seizure free, and then the lead broke, which RARELY happens. Since the replacement of that lead, the device is no longer working the way it used to. My seizures continue to increase not only in frequency, but also the length that they last. Years ago they would last only a few seconds. Now they can go a good 5 minutes. And I have no idea what has happened during that time. I rely on others to tell me what happened while I was having a seizure.

I need, I DESERVE the best FDA approved procedure there is to restore my life to as normal as possible.  I have studied and read everything I can get my hands on regarding this procedure and my neurologist, neurosurgeon, and I agree that I am a perfect candidate. When the idea of the procedure was first presented to me a year ago, it was the scariest thing I’d ever heard of. Brain surgery isn’t something that people jump to have done. It took me months and months to decide that this was the best shot to help me lead a normal life. There are still many unknowns regarding this entire process. I am still scared. But I know with all my heart that this is the best thing for me, and you can’t take this away from me. This is the best chance for the normal life that I haven’t had in almost 20 years.

RNS has been put through clinical trials. The data now shows that with every year, even within months, seizures become less and less. Patients who would suffer from hundreds of seizures each month are now only having 20 or 30 each month. Isn’t that INCREDIBLE? Patients are getting their driver’s license back, they are regaining their independence. Insurance companies everywhere have been approving this procedure. Why would they do this if RNS hasn’t been proven to work? 

How much worse do I need to get before you will consider the newest and best treatment available?  There is no rhyme or reason to my seizures. I had the Vagus Nerve Stimulator implanted because I used to have auras...I could detect when a seizure was coming and use the device to stop them. I can’t detect them in advance anymore to prevent them from happening. This is why the RNS would be so beneficial for me. The device would detect, and stop the seizures for me. Short of continuing down the road of constantly changing medications that are expensive and have horrible side effects, I don’t know what to do. If Cannabis had been approved in Utah I would be going down that road. It is helping so many people decrease the number of seizures they have. Unfortunately I don’t have the finances to relocate to Colorado, where it is legal to use Cannabis.

I hope that this letter, that my story will help you to see how imperative this procedure is for my health; both mental and physical. It will not only improve my quality of life in amazing ways, but it will also improve the lives of my family members who help me deal with this on a daily basis.

This is the best way I can describe what my last 19 years have been like.  It once again became a waiting game.  I cancelled all the help I needed for Brandon, our family made camping plans, and life moved on.

Just this morning, I called the neurosurgeon's office to find out if the peer to peer meeting had happened yesterday as scheduled.  The meeting was hopefully going to happen this afternoon.  3 hours later I received a phone call from the neurosurgeon's nurse:  my insurance company had approved my surgery, and they still want to do the surgery on the 5th...4 days from today!  The doctor's nurse said that she'd be working like crazy this afternoon making sure that everyone who would be involved with the surgery is still available, and that I would be hearing from her by the end of the day.  Once again, it became a waiting game.  Only this time, I knew the surgery would happen...I just didn't know when.

Well, turns out the blessings are in my favor today.  I will be having the surgery done this Tuesday.  I have no idea how long I'll be in the hospital.  I know it will be the most BORING, and difficult stay ever since I can't leave the bed for any reason at all, so I'll be bringing books to read, and thankfully they have WiFi; so Netflix will once again become my best friend!

I'm VERY nervous, and I have A LOT of planning to do before Tuesday morning at 5:15AM when they want me to check in!  Like I said, I'll have WiFi access, so I'll do my best to update everyone about what's happening as the week goes by.  We know this is the right course for me to take.  There are still A LOT of unknowns, so I will GLADLY take all the prayers in the world!

Here goes nothing...

2 comments:

  1. We will keep you in our thoughts and prayers. We wish you all the best with healing as quickly as possible. Peerys from Turlock 4th Ward.

    ReplyDelete
  2. We will keep you in our thoughts and prayers. We wish you all the best with healing as quickly as possible. Peerys from Turlock 4th Ward.

    ReplyDelete

Related Posts Plugin for WordPress, Blogger...