Epilepsy Awareness Month: Surgical Options

Robert’s Epilepsy was considered uncontrolled, otherwise known as refractory or intractable. I always called it intractable but either is correct.

Epilepsy is classified as intractable after two anti-seizure medications fail. Robert’s seizures continued after several (and I mean several) anti-seizure medications and combinations of medications failed. This happens for approximately 30 percent of people living with Epilepsy!

Medications aren’t the only treatment option for Epilepsy though. There are several surgical options and Robert tried several of those as well. The Epilepsy Foundation has some good information about the different kinds of surgeries for Epilepsy so I won’t go into all of them.

I do want to tell you about the surgeries Robert had. Robert was willing to try anything to control his seizures – even surgery.

Shortly after Robert was diagnosed, Robert was about seven years old and our parents wanted him to see the best neurologist in the world. That seemed pretty far-fetched since, believe me, we did not have Kardashian money, but our parents did love us kids so I can’t really blame them for wanting the best for Robert.

They found a neurologist and was able to get an appointment. In Switzerland!

I always wondered who they had seen and while searching for photos after Robert died, Rich and I found a piece of paper with the neurologist’s name! How crazy is that?! That surgeon said he could not do surgery on Robert but I looked him up and it turns out he really was the best! He was chosen as “Neurosurgery’s Man of the Century” in 1999.

I need one of those shocked face emojis right about now.

Robert didn’t have surgery when he was seven years old but he did have two Brain Resections in his twenties. They helped some in that he no longer had Tonic Clonic seizures but he did still have seizures.

Robert also participated in a trial for the Vagus Nerve Stimulator and then the Deep Brain Stimulator.

2021 DBS Surgery

Once the Deep Brain Stimulator was approved by the FDA to treat Epilepsy, Robert had that implanted. It had shown promise when he was in the study so we had hope it would help him. Robert had the DBS implanted in 2021 and, if I understand it correctly, it works better and better over time. That seemed to be the case for Robert as we thought his seizures were decreasing! His wonderful neurologist and I were very hopeful for the future! (Unfortunately this last visit to the neurologist was three days before Robert died.)  

Our hope was that Robert could reduce or eliminate some of his anti-seizure medications since all the side-effects of the medications are just awful. For Robert, the worst was the Depakote! That was brutal on his liver and he was consistently living with high ammonia levels making him pretty drowsy.

While Robert’s surgeries weren’t a miracle cure for him, they can help and they did help him. I personally know (okay, I know her through social media) at least one young lady who had a major surgery for her Epilepsy and it stopped her seizures. She’s been seizure free for many years now. When that happens, it is a miracle!

And, as you know, we are all about miracles around here!

Comfort in a Diagnosis

Robert has declined so quickly this year and had so many different things going on, my head has been spinning.  I just want to find out what’s wrong!

 

Looks like Robert's appetite is back!

Questions have swirled this year: Why is he getting pneumonia so frequently? Do we use antibiotics when he has bronchitis and risk resistance to them or risk the bronchitis turning into pneumonia? (Side question: Why aren’t there any good choices?) Why does he now sometimes have both urinary and bowel incontinence?  Do we blame the antibiotics or is there something more going on?  What’s with the increased seizures? The irritability? The trouble walking? The sleeping 18 hours a day?  The eating half of what he used to?

We got a possible diagnosis of Cervical Disc Disease with Myelopathy at the last neurology appointment.  Boy, that didn’t sound good.  The neurologist needed an MRI to confirm what he suspected but Robert couldn’t tolerate the MRI.  They decided to do an MRI with anesthesia and wrote a referral for that.

Just a few short days after that, Robert was literally unable to move his legs.  Richard (yes, my husband with the severe and chronic back pain) had to lift Robert from his wheelchair to the bed. The day after that, Robert slept and slept and slept.

Neurology suggested we take him to the ER and get a CT scan done and then the hospital could do the MRI with anesthesia. It was a Tuesday afternoon.  How bad could the ER be?

Oh how naïve I am!

It was a very long day.

Almost as soon as Robert was settled in his hospital room he started throwing up and running a fever off and on.  What in the world?!  Day Program informed me the following day that other consumers had been throwing up lately. Great. Robert has a stomach virus on top of everything else.

And, it’s contagious. Thank you very much.

After several days of waiting for the MRI with anesthesia (we had to wait for the stomach virus to subside, then there was the 4^th of July and then a weekend and then a promise of “maybe we’ll do it Monday but for sure Tuesday”).

By late afternoon Tuesday, the neurologist was not hopeful and was as frustrated as the rest of us.  For whatever reason, the hospital does not actually schedule MRIs with anesthesia for people actually admitted to the hospital.  They “squeeze” them in between emergencies and the general public appointments (as in, if I had taken Robert home and then made him an appointment, he probably would have gotten it a lot faster).

The neurologist did what she could and called hospital administrators (the hospital neurologist is not his usual neurologist).  They pulled some strings and we were on our way to the basement of the hospital housing the MRI machine.

It was miles away from his room and I did my best to keep up with the transport team pushing the gurney but I wasn’t about to complain.  We were getting this done and we will be able to actually find out what is wrong!! Woohoo!! 

Until I hear the word “cancelled” on the mikes hanging around the necks of the transport team and they stop cold.

Oh hell no.

We were no more than ten feet from the door leading to the MRI.  This test we have endlessly waited for.  A voice from the room said, “He has hardware in him still.” 

NO HE DOESN’T!

I made my way around the transport people and past the gurney into the MRI room.  Mr. Radiologist, MRI technician and the transport people looked as if they just might call security.

He does not have hardware in him.  The VNS and DBS have been removed.  I was assured by the neurology team at his former hospital – he can have an MRI. 

GET HIM IN THERE!

Mr. Radiologist towered over me but respectfully talked to me, even while I ranted and raved and told him he was flat out wrong.

He insisted there was a piece of the VNS still wrapped around the vagus nerve and that Robert’s nerve could be burned if he had the MRI.

But he’s had an MRI since the equipment was removed! We’ve waited for a freaking week for this test!  This is ridiculous!

All Mr. Radiologist could do was say how sorry he was.  He was not backing down. The transport team was already leaving with Robert, walking back to the room and I just threw up my hands and stormed back right behind them.

As soon as we got to the floor, I looked at the nurse – who was as surprised and disappointed to see us as I was to return – and said, “Call neurology!”

One of the neurologists from Robert’s team showed up within minutes. She was mortified and apologetic and by this time, I was in tears. A moment later, Mr. Radiologist peeked into the room and I dropped my head into my hands. 

I’m sorry I lost it but we need to find out what’s wrong.  We’ve been waiting for a week for this test!  I just can’t take this!

He was very sympathetic but again explained how dangerous it would be for Robert to have the MRI.  I told him I understood and appreciated him coming to the room to further explain his position. 

I get it.  I do.  I just want answers.

The lead neurologist on the team came in a short while later and apologized profusely. She missed the hardware on the CT scan. She should have seen it and didn’t.  She was kicking herself and felt absolutely horrible. She assured me the entire team would learn from this which really was of no comfort to me at that point.

What’s next?

She had a plan and for that, I was grateful. 

She decided the next best test would be a CT scan with myelogram.  

Will this get us a diagnosis?  When can we get this?  Can this happen tomorrow?  It’s already Tuesday night – we have been here a week and Robert is losing function by the minute. 

Please!

According to the neurologist, there were two options: Cervical Disc Disease with Myelopathy or Cumulative Traumatic Encephalopathy. The CT scan would be able to confirm or rule out the Cervical Disc Disease.

She made it happen and the next morning preparations were made for the CT scan.  By noon we were done and after waiting an hour for transport (perhaps the story of the lunatic sister was making the rounds and they were drawing straws for the job), we were back in the room waiting for the diagnosis.

The results were that there was some narrowing of the spinal column in the C5/C6 area but there was enough space left that they were comfortable ruling out Cervical Disc Disease.

The neurologist said she thinks all of Robert’s symptoms and decline are a result of Cumulative Traumatic Encephalopathy.  Since all I had was time at the hospital, I had done research on this so asked if it was CTE or CTEM. 

CTEM? 

I didn’t really mean to play “stump the neurologist.”

The resident on the team went to the computer to look it up: Cumulative Traumatic Encephameylopathy.

The neurologist confirmed it was CTEM, the slightly more aggressive and serious cousin of CTE.

This is not something that can be fixed and it is extremely serious and progressive (sort of like ALS, aka Lou Gehrig’s disease).

But it is a diagnosis and I find great comfort in knowing what we are dealing with.  While we can’t predict exactly how this will progress in Robert, it makes sense.  His lung muscles are getting weaker, he has a swallow disorder and his leg muscles are unable to get moving. His brain is forgetting to tell his muscles to work.

For me, not knowing what is going on or what to expect is worse than knowing. 

For me, there is comfort in a diagnosis.

For Robert, he knows he is going to get physical therapy for a few weeks at a Skilled Nursing Facility. He knows he is getting meals served to him and he’s looking forward to the activities at the SNF. 

That’s all the comfort he needs for now. 

What Epilepsy Means to Me: Mandy Krzywonski from My Life as Mandy . . . with Epilepsy (Part 2)

We started to get to know Mandy yesterday in Part One of her interview.  At 19 years old she is still trying to find the right treatment for her seizures yet she is determined to help others. Mandy talks about her blog and her advocacy work today.

Robert’s Sister:  Have you done any advocacy work (individually or with an organization) or participated in any research studies?  What made you want to be involved?

Mandy getting an EEG

I have done a lot of advocacy work and it is something that you could probably say that I have lived for. I started my blog My Life as Mandy. . .with Epilepsy when I got my VNS [Editor’s note: VNS = Vagus Nerve Stimulator] put in. Literally! I blogged about my first days with the VNS and what it was like. Why? I wanted to help others trying to make the decision. The VNS reacts differently with everyone else’s body, and I had some rare side effects. So I am very glad I shared my story. I have had side effects from the VNS that I haven’t even heard of but from three people in my life! I stopped blogging about the VNS when it stopped working for me. Things didn’t change, and there was no need to continue the same post over and over again. Am I right?

My blog took a turn as I started to meet other advocates, and as I started to take a better look at myself. I saw how I felt alone a lot in this world. Wondering if others went through everything I went through with seizures. The VNS stopped mattering to me at all. I saw how other advocates and bloggers spoke a lot about their lives, and I found myself saying “Me too! That happens to me too!”

Then I realized – people want to know about my everyday life. People don’t want to feel alone anymore. Now, I had written about my everyday life already. But not as much as I should have. So I started to write more, and more detailed. It’s as simple as that! Within six months my blog got pretty popular. I had comments and emails everyday by the dozens. I noticed folks started to call me the “EpilepsyBlogger,” which is where the name came from. I made a Facebook fan page, and things went wild! I had readers from all over the entire world!

I wanted to give up sometimes. Sometimes there were weeks when I felt like I wrote my heart out and I didn’t reach anyone. And some weeks my mother would say, “You don’t need to be blogging if you’re not getting paid to do so.” But something said to keep on going and good things would happen. Sure enough, I’d wake up to an email from someone thanking me for making them feel less alone. Or someone telling them that I helped them understand their son a little better. Or someone saying that they haven’t felt this “understood” in their entire life. That’s why I blog. It’s not for the money, (although, that would be great!) it’s simply to help others.

Other than blogging, I have done volunteer work with the Epilepsy Foundation in my area. I do a personal fundraiser each year during National Epilepsy Awareness Month (November), along with donating 50% of my artwork proceeds to the fundraiser during November. I drop off hospital gift baskets to the children’s Neurology floor in my local hospitals every four months. I have three Facebook pages dedicated to helping families and people with epilepsy, and an epilepsy support group on Facebook! I don’t think I am even listing all that I do – but I’m sure everyone gets the point!

Robert’s Sister:   How has epilepsy affected your life?

Epilepsy – being as painful as it is – has not affected my life in entirely negative ways. For each “-“ there is a “+”. For example, I wouldn’t be able to blog about epilepsy and be as powerful of an advocate as I am if I hadn’t first suffered so badly with epilepsy.

Or, although I have not been able to carry a job because of my seizures, I have been able to create more art, which is something that I love. It is another thing I live for, and it is how I express my deepest feelings. Most of my art is about my epilepsy, so it is really something to look at for a while when I’m  finally done with each piece. Each tiny detail has a specific meaning that only a person with epilepsy could understand. I’ve even had one of my pieces featured on the cover of Epilepsy & Behavior, the one and only international Epilepsy medical journal! It was so awesome!

Robert’s Sister:  What is your favorite memory? 

As far as memories go, I have so many. But here’s a summation!

1.       Finally going home after a terribly long and violent hospital stay. EEGs are always the worst. My mother (sometimes mother and father) always take me home and spoil me with something. They ask me what I want, and I usually want a nice chicken finger basket with white gravy and Texas toast from Whataburger. Sure makes up for all that disgusting hospital food! Although, this last time I scored an iPad! But truly, something about knowing that you’re safe with your parents after a week (sometimes two weeks) of Tonic-clonic seizures is just heaven. That’s why I always scream for my father when I wake up, and that’s why I always want to lay next to my mother after the pain wears off.

2.       Having my boyfriend of two years, Rafael, love me through all this mess. He’ll hold me during a complex partial (which happens a lot when I am half an hour late on my medication) and feed me medication. Then he’ll help me to the couch and let me fall asleep on him while he holds a bag of frozen peas on my head. (If you have epilepsy, you know the headaches you get afterward are enough to take out a crew of soldiers. He doesn’t care when I am swollen and ugly from my pills – Heck, he still lies and say I’m beautiful! It means a lot to have someone love you that much. (Read A Love Like Frozen Peas to learn more about my boyfriend and I.)

3.       Dropping off my children’s hospital care baskets and seeing the smiles on their faces. I drop off the hospital baskets to the children’s Neurology floor, where many children have epilepsy. I wasn’t allowed to know which ones, but many of their parents told me when they saw my "EpilepsyBlogger” t-shirt. It takes a lot to make a child smile after a day full of seizures, and I am glad that my baskets fit the test.

Robert’s Sister:  Do you ever wish you didn’t have epilepsy?

I won’t lie. There are days when I look to the sky and ask God, “Why did you pick ME?!” At one point or another, we’re all going to do this. For me, I feel like God picked me because of all the things I am currently doing to help others like myself. However, I don’t think we’ll ever know the real answer. Maybe there is no answer. Nonetheless, we just have to keep on moving. We must be thankful with what we have, work for what we want, and get over what we can’t have.

I have to get brain surgery this January (Left Temporal Lobectomy) and I am scared out of my mind. I’ve been crying for the last two weeks constantly, and I’ll gladly admit that. My boyfriend, Rafael, is so sweet and he’s always there to listen and make me laugh. But sometimes he has to give me the cold truth so I can pick my butt up off the ground and keep chuckin’. He says, “Mandy, we’re all living on borrowed time. There’s millions of people who wished that they could have lived to your age, but never made it. So keep enjoying your life, and cherish every minute. Go into this surgery with confidence that you’re going to kick epilepsy’s ***. I’ll be holding your hand when you go in to the hospital, and I will be there when you get out.  Just be thankful for the life you have been given.”

Robert’s Sister:  What do you want people to know about epilepsy?

If I could pick something that I really want people to know, I would have to say that epilepsy is really real. It isn’t just this illness that is “all in our heads” or “not so bad because it doesn’t kill us.” So first of all, it hurts mentally, emotionally, and physically.  A lot of that mental and emotional pain comes from the fact that others don’t understand what we go through.

Second of all, epilepsy, unfortunately can be deadly. Look at status epilepticus or SUDEP. That’s something doctors don’t say much about because they want us all to have good attitudes about our health – they don’t want us to worry about dying all day every day. I thank them for trying to help in that manner. However, the public needs to be aware and understand that we must all be aware and we must all donate so we can find a cure for this illness that has taken just as many lives as breast cancer.

Robert’s Sister:  Please tell us how we can contact you.  

Mandy's website: http://mandykrzywonski.blogspot.com/ 

 

EpilepsyBlogger Fan Page

(EVERYTHING EPILEPSY!)

 

 

 

 

 

 

 

 

 

 

 

Epilepsy, A Love Story

(For mothers, fathers, aunts, uncles, grandmas, grandpas, nieces, nephews, step-fathers, step-mothers,

daughters, sons, step-daughters, step-sons, friends, best friends, wives, husbands, couples, and so on! Even singles!!!)

 

 

Epilepsy Blogger's Words of Hope for Epilepsy

(Hopeful words, videos, music, and more to brighten up your day!)

 

Epilepsy Support Group on Facebook

Loved ones of those with Epilepsy also welcomed.

Topics posted each week by Mandy (EpilepsyBlogger).

All ages!

 

Robert’s Sister:  Thank you, Mandy, for sharing your life with epilepsy with us.  You are clearly enjoying and cherishing every bit of life possible! You are an inspiration and we wish you nothing but the best outcome possible for your surgery.

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.  

 

What Epilepsy Means to Me: Linda Andersen, Jason’s Mom

Today we meet Linda, a mom living in North Dakota with her husband and her 43 year old son, Jason, who has had uncontrolled epilepsy since he was 2 ½ years old.  Linda and I crossed paths last year during epilepsy awareness month and she shared her story with Robert’s Sister then.  Linda and I immediately had a connection because her Jason and my brother, Robert, seem so similar.  Close in age, same uncontrolled seizures, same positive attitude. Meet Robert’s doppelganger:

Jason chooses Happy

Robert’s Sister:    When was your loved one first diagnosed?  Tell us about the process of getting the diagnosis. 

 

Jason was diagnosed in 1971.   He was 2 1/2 years old.  We live in a very rural community in North Dakota so getting a diagnosis was long and difficult.  We started at the ER at the local hospital, we were then sent to the nearest neurologist (who was 180 miles away) for testing and examination.  Over the course of several years, we went to the Mayo Clinic four times, the University of Wisconsin, Gillette Children’s Hospital in Minnesota and the University of Minnesota.  It was a long, difficult journey, not just mile-wise, but mentally and physically.  We now have a neurologist in South Dakota and at The Epilepsy Group in Minneapolis, Minnesota.   

 

Robert’s Sister:  How did you feel when Jason was first diagnosed with epilepsy?

 

Scared, confused, angry, sad and helpless but hoping somehow it would all work itself out in the end with an answer as to why and, of course, with seizure control. After 41 years, sadly, we do not know why and Jason still continues to seizure on a daily basis.  But now, I feel okay.  It is what it is and we just take each day as it comes but truthfully those feelings I had in the early years still creep in from time to time. Sad is the one that gets me the most. 

 

Robert’s Sister:  Did your family treat Jason differently after the diagnosis?  If so, how?

 

Jason's younger brothers grew up knowing Jason as a brother who had seizures so, no, they just accepted him as he was.  The extended family, of course went through the same emotions as we did but overall he wasn't treated all that differently, we were just more cautious for reasons of safety.

 

Robert’s Sister:  Did the kids at school treat Jason differently because he had epilepsy? 

 

Yes, but not always in a bad way.  Jason was a pioneer of sorts at our local school.  No one previously had seizures to the extent Jason did or had behavior or mood problems (caused by medication) like Jason.  So for teachers and students alike it was a learning process.  Of course, there were always someone who teased but for the most part the kids at school and the teachers were protective of him when it came to seizures.  But he was also left behind as far as forming friendships, mainly because the kids just didn't understand why he acted the way he did.  Jason had many years of bad behavior caused by the seizure medications he was on so kids tended to leave him alone.  They were friendly from a distance but responded if it was required because of a seizure in the classroom or on the playground.  Jason was in Special Ed with mainstreaming out to a few classes.  For the most part, we had very understanding teachers for Jason who were easy to work with. 

 

Robert’s Sister:  What treatments has Jason tried?   What has worked?  What hasn’t worked? 

 

Jason has been on practically every medication out there.  None have really worked.  Most caused horrible behavior and mood swings so we finally settled on Carbatrol and Lorazepam which control the behavior the best.  On all the meds he still continued to seizure so it just was a matter of deciding which med gave him the best quality of life without turning him into a zombie.  He still averages 30 seizures a month which may seem like an unacceptable number but it just is what it is.  Besides the medications, he had a Temporal Lobe Lobectomy in 1983 which failed and a Vagus Nerve Stimulator Implant in 1999 which also failed.  He was just hospitalized a year ago for two more medication trials (“black label” drugs) and tests.  Neither medication worked and from the testing and because of his past history, the neurologists at The Epilepsy Group informed us there were really no more options for Jason at this time.   

 

Robert’s Sister:  Do you think the medications affect how Jason feels?

 

Most definitely!

 

Robert’s Sister:  Have you done any advocacy work (individually or with an organization)?  What made you want to be involved?

 

When Jason was first diagnosed with epilepsy, I became an ARC member and was on the ARC Board for many, many years.  I was also involved with Spark, a local parents group.  We worked with other parents, teachers and administrators and the community educating them about special need children and adults in our school system and community. I also helped, along with many others, in making the dream of a sheltered workshop and group home in our community a reality.  I am now a Crowdrise member trying to raise awareness and funding for epilepsy.   

 

Robert’s Sister:   How has epilepsy affected your life?

 

How has it not!  From the moment of Jason's first seizure, the whole dynamic of our family changed.  I quit my job. Instead of vacations, we spent time in clinic or hospitals. We spent time trying to convince Jason's brothers he wasn't being favored because of the amount of time his dad and I devoted to his care.  We spent time trying to deal with the guilt I felt, because I knew that is exactly how his brothers felt when they were younger. Having to ask family members to "watch" Jason from to time for one reason or another and knowing they really didn't feel all that comfortable taking care of him if one of us weren't there too, so I just quit asking.  I could go on and on, since I think it affected every aspect of our life in one way or another on a daily basis.  But, 40+ years later, despite the seizures and all that goes with that, life is pretty darn good compared to what many others face in their own little corner of the world.  I read somewhere that if we all threw our troubles in one big pile, we would probably still take our own back compared to what's in that pile.

 

Robert’s Sister:  What is your favorite memory of Jason? 

 

Jason giving his younger brother by eight years advice.  His brother had come home for the weekend from college tired, depressed and confused about where he wanted to go in his life.  And, as his Dad and I discussed this with him most of the weekend, Jason sat quietly on the couch probably taking in every word said but saying nothing.  When his brother came to say goodbye to him before heading back to college, Jason got off the sofa and looked at Ryan and said, "You know, Ryan, you can choose happy or sad. I choose happy, what do you choose?"  Simple as that!  Ryan said it was the best advice of the whole weekend. That piece of advice Jason gave his younger brother has stayed with me all these years.  If he can choose happy after all he has been through, then seriously, how can I complain how a life of epilepsy has affected me and my life?

 

Robert’s Sister:  Do you ever wish Jason didn’t have epilepsy?

 

Every second, minute, hour, day, week and year. 

 

Robert’s Sister:  What do you want people to know about epilepsy?

 

To just be aware of the stigma and fear that still surrounds those that live with epilepsy in the schools, workplace and life in general.  And of course the first aid that goes along with someone having a seizure. 

 

[Note from Robert’s Sister: First aid information from the Epilepsy Foundation can be found here.]

 

Robert’s Sister:  Is there anything else you want to say?

 

Jason will be 44 in a couple of months. He works at ABLE, Inc. (a sheltered workshop here in town), five days a week, lives at home with us, still thinks of his two younger brothers as his big brothers and is an uncle to three nephews and two nieces who are so gentle and kind to him. He loves his sofa, movies, puzzles and books and accepts life for what it is and never complains about anything.  If anyone asks if he is having a good day, he will always nod yes.  He still chooses Happy even if he isn't as verbal as he once was.  

 

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business.

 

Jason's Story is on Crowdrise at http://www.crowdrise.com/LindaAndersen.

 

Robert’s Sister:  Thank you, Linda, for sharing your epilepsy story!

 

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”   Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.