Cricket’s Epilepsy
(updates below this history, latest on top)
Many customers have been aware of my epilepsy, something I have been fighting since I was ten years old. I have been through many years of testing, different medications, treatments, and nothing has seemed to work.
My seizures are generally small. They are what have been diagnosed as complex- partial seizures. I used to refer to them as “dizzy spells”, as that’s all they were. I’d get a bit of tingling in my head, and feel a bit dizzy until the seizure ceased. Throughout the years, the seizures would get worse, then they’d get better with a medication, and that med would slowly wear off. When they got worse, the meds would change. I went through years of this with no real solutions.
About 20 years ago, I had the biggest seizure I’d ever had that knocked me off a bar stool at our favorite restaurant. Jeff says I wasn’t breathing for 12 minutes. That put me in ICU for a day and CCU for three. It was there that I met the head neurologist at the hospital. I thought he’d be able to take care of me as needed. But, eventually, he’d be the one who made me feel like the one who’d say, “Take two of these and call me in the morning.
There was a period of about five years that I didn’t have any seizures, until the pharmacy began giving me a generic of the medication that was working well for me. Who said the generic brands were the same as the real thing? This, I would say was proof that the statement is false.
Note that all this time, I had no insurance, as I couldn’t afford it until ObamaCare came about, as I couldn’t find an insurance company who would accept an epileptic as a patient, or who would charge me more because of my pre-existing condition.
The new program I am on introduced me to a new neurologist (new to me, anyway). He was the only one who ever gave me hope, stating that if he couldn’t help me, he was going to send me up to Stanford. I literally walk out of his office in tears. We tried different meds & doses, and while things got better, I still wasn’t seizure free. On our last visit two years later, he came into the office, shaking his head. He told me that it was time. Again, I left crying. He was the only one who truly cared. I was in awe.
The following are updates, the top being the latest. But first, let me thank you all for you support and care throughout all these years. Some of you have seen me go through seizures, others we’ve just talked about it as you’ve asked how I am feeling. Some have read the little sign I have posted on my table, just in case one happens and you weren’t sure just what to do. All of that is appreciated, more than you know. It’s been a big help to not go through all this alone. I feel it’s important that the people I know and deal with are aware of what I am going through at the moment. When I was a kid, I was ashamed of it, now I use it as a tool to educate those I know about it. Your support means a lot. Thank you!
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Note that the latest update is always at the top
April 12, 2024
Visited Dr. Meador again on Wednesday. It had been about two years since I’d seen him last, so this was an important visit. I’d had about a dozen seizures this past year, so he wanted to check on the chip. I also haven’t been able to send reports. I’d do readings, but wasn’t sure if they were getting them or not, so I took the computer with me on this trip. Instead of turning up the chip as he has done in the past, and what I was expecting, he just turned up the sensitivity and quickened the response time. Hopefully, that will help. He had his technician look at the computer. I went ahead and brought it home and tried again. Still didn’t work. So, he is sending me another one, along with a label to send this one back. Hopefully, that will work much better. As I expected, I did have a small seizure on the way back. I usually do, as the trip up and back are exhausting for me. I can’t even work the next day, it’s so tiring. Medications are remaining the same for the time being, but eventually, I’d like to be able to bring the doses down, or possibly get rid of them all together, but no promises. I’m ok with that, just stop the seizures!
I’m feeling pretty good now, other than stressing about taxes & such. lol
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January 20, 2024
Was just working on the site and realized that it’s been forever since I’ve done any updates. Things have just been crazy since the beginning of Covid, I think a lot of us just lost thoughts and time. I know I sure did! Yes, I am still alive. While I am still having seizures, they are much smaller and less often. The chip is now at 3.0mA (I think). I am scheduled to go see Dr. Meador for the first time in two years in April. I’m guessing he is going to want to turn up the chip again. I still have occasional loss of equilibrium and double vision, but like the seizures, not as often.All is still there, just not as bad. But, still, it would be nice to be free of all that.I truly appreciate all your support, and will try to remember to put in another update later this year after heading up to Stanford again.
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September 29, 2021
Earlier this month, we tried to do a virtual visit that didn’t work very well, due to computer problems on his end, so he suggested I go see him. He was hoping to turn the chip up anyway. So, we took the drive up to Stanford to see Dr Meador. Before heading up there, I took the time to look through my calendar and look at my activities since the beginning of the year. While there were 20 seizures during 2020, this year, only 3 actual seizures were counting. There have been many other situations in the meantime, such as loss of equilibrium, double vision and painful tightness, feeling as though someone is pulling my hair.While up at Stanford, Dr. Meador turned up the chip from 2.5 mA to 3. This time, I didn’t have many side effects as I remembered from last time, but I was extremely tired from the drive…again. The last two days, I would sense the feeling that a seizure might hit, but it only lasted about a second or two then it would go away. Still on the medications, which he is hoping to get me off of. On the way of the door, he stated that laser surgery is still open on the table.
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May 20, 2021
Doing well. Seizures are smaller and less frequent. There are still a few that I need to rest from, but not very many comparatively.I must say that I am feeling muchbetter. The only thing is that some of the major headaches that I’ve had for many years, are now starting and remaining on the right side, where the chip is. I don’t know if that is from the actual chip, or from the surgery, or even if it’s because of the stitched area. The staples were removed shortly after the surgery, that area is still very tender to the point that I cannot wear my normal ‘country style’ hat that many know I enjoy wearing. A few months ago, I even tried to wear a baseball style hat and it hurt. So, I now stick to my beanie.
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June 24, 2020
Due to Covid-19, I was unable to go up to Stanford, so we did a virtual visit. I told him that although they are smaller, I am still having seizures. Since he was unable to turn up the chip long distance, he changed my medication regime. The biggest thing I am experiencing now is major headaches. Hard to tell whether that is the result of the chip, but it’s difficult to tell without going up to see him. Hoping to go up some time next year.
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July 26,2019
Went back to Stanford University to meet with my neurologist. Of course, he asked how I was feeling, and unfortunately, I needed to tell him about seizures I am still having. They are, however, less frequent, and less wearing. But still, they are there. They did an interrogation (the computer reading of the chip) and looked at the results. That plus the interrogations I’ve done weekly, and the messages the chip has sent off to Stanford, the average number of activities that MIGHT be associated with seizures is 940 a DAY!! With that, and as formerly planned, the power of the chip was brought up from 1 miliAmp to 1.5 miliAmp. I go back in October for another session and raise up to 2 mA. He wants to see me every three months, and we’ll take care of the chip as needed during every visit. .5mA every time. Next appointment is on October 30th.
One thing that people have commented on since the surgery is that I’ve been looking better. Well, to be honest, I’ve been feeling better. Not just because of the chip, but also because I feel as though I am finally seeing an end to the rough road I’ve been on for the last 40 years. I am seeing an end to that very long tunnel that I thought I was stuck in for the rest of my life.
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June 4, 2019
I see it’s been a while since I reported. The chip is still at 1 mA, and I go in again at the end of July to most likely get it turn up a little. I said earlier that the appointment was in June, but I was called and they had to postpone it. I have been doing well for the most part. I’ve had a few seizures since the surgery, but not as plentiful, not as bad. There have been times when I’d feel the “triggers” that I’ve had in the past. Very rarely now do they turn into actual seizures, whereas before they were a warning signal to prepare for one.
After a while, I told Jeff about them, and he got excited with the news that they rarely mean anything now. He got excited and said that the chip must be working, at least a little. I never really looked at it in that sense. For me, it was just more of the same, just smaller and less frequent. It didn’t dawn on me that it could be a result of the chip, so I just never said anything. But, now I can see that it is possible.
I’m feeling pretty good, I’ve had no side affects, except for the tenderness of my head, but I was warned that it would be the one thing that takes the longest to heal, especially since I’m sleeping on it constantly. Understandable, especially since I feel more comfortable on a hard pillow. lol
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March 27, 2019
After a few weeks of letting the chip get to know me and my brain activities, it was time to turn the it on. My doctor turned it on to 1 mA to start with, and in late June, I will be going for another visit to see how it’s going. Most likely while there, they will bring that up to 2 mA.
It will take a little bit of time to get everything all settled, and there is no promises as to when it is all settled down 100%. At times, it could be three months, sometimes three years, everyone is different. But, if nothing else, the seizures will be smaller, and less frequency.
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February 11, 2019
Well, the chip is in, and I am home. Was an interesting trip. Went up Thursday the 7th, as we were told to be at the hospital at 5:15am. Got a little lost, so we got there about 5:45. They were ready for me and got me in shortly thereafter. Next thing I know, the anesthesiologist is putting me out, then what seemed like just a few minutes later, the doctor was saying that he was done. The procedure took about three hours.
So, the chip is in, but the stimulators haven’t been turned on. It needs to learn about my brains activities first and what comes about when those seizures happen. In about a month, I will go in to have the stimulators turned on, which should help control those activities. It may not happen immediately, but time will see.
The hospital released me on Saturday, a night on which we spent with some dear friends who put up with us for the weekend, and we drove home on Sunday morning. I was dead dog tired from that long drive that I went straight to bed and slept the rest of the day. Today, Monday, I am actually sitting again in my office, checking on emails, and writing checks. Nothing more, I promise. I have someone here to deal with the rest, and he won’t allow me to do anything more than I need to.
In about 10 days or so, the staples will be removed, and the healing will continue. My head is a bit tender, of course, where the staples sit, especially after laying on my head while asleep. Hopefully, that will get better when those monsters are removed.
Julius was glad to see me home, and spent the afternoon with me, then slept with us all night. Something he doesn’t do, so I was a bit surprised. He knows something is up. It’s obvious.
Another step is completed
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January 31, 2019
Went back up to Stanford for some final appointments before the surgery. The first was with the surgeon's assistant. Mainly to go over the procedures of the surgery and to see if we had any questions. We spoke with him for about 20 minutes, then headed on to the next appointment, which was with the anesthesiologist.
She basically explained what her job was, and that I would be “asleep” for about three hours, as she put it. Very nice woman, seemed trustworthy.
The third appointment was with one of my original doctors. While there, I received a package, which included more information about the chip. She also told me more about the way to record the seizures and send them back to Stanford.
She showed me what she called a “wand”. To me, it looked like the hand talk that pilots use to talk to the airport towers with, only with a longer handle. The whole contraption is about 8 inches long. With that, I am to record my activities of the day. To do this, I hover the wand over the chip. Not touching the head, but close enough that it can read the chip properly. The information gets transferred over to basically a “laptop computer” that they give me. (unfortunately, I can’t do anything else with it.) Once a week, I send that back to Stanford, so that they can see my brain activity for the last week. Interesting set up.
The first month is basically an “educational month”. It’s so that they chip can basically learn about me, just what happens to me, and what I need. Once that month is over, I will go back to Stanford and they will turn on the stimulators that will hopefully detect and stop the seizures.
The timing of the success with this is unknown. It could be a few months, it could be a year. There is the possibility I may not be completely seizure free, but the numbers and intensity would go down considerable. There’s a chance it may not even work at all. It’s all up in the air. I’ll be staying on the meds for now, and eventually, I might be able to stop completely. We’ll just have to wait and see how it all goes.
All I can hope is that it makes things better, even if I still end up experiencing a few seizures from time to time. Fingers crossed.
The surgery is on February 8th. I was told that it could be as early as 5:00 am. I have a friend who has offered us a place to stay. I’m hoping to go up Thursday afternoon/ evening, so I can be closer to Stanford Hospital. He has had medical care there and knows what they are all about and how well they work with their patients.
They tell me that if all goes well, I can come home the next day. If they feel they need to keep an eye on me, they’ll keep me for another night. While they say I can go back to work within a couple of day, but not to do anything strenuous...especially no lifting of heavy items. So, customers will be asked to help with that unless I have some help in the office, which I’m pretty sure I will.
The only bummer about all this that I have to take myself off my ibuprofen, so I’m sure I’ll be hurting in the meantime. lol Oh the price we pay!! I’m pretty sure it’ll be worth it though.
Until next time.
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Surgery is scheduled for February 8! Will be going in for pre-op on January 31th. They will be putting me through 4 more tests. One is an MRI, one is a CT scan and not sure what the other two are.
The surgery itself will be on February 8th! Unsure yet of the time, so I’m waiting for the next call to give me times. Not sure just how long I’ll be out, but in the previous update below, I wrote about what the doctor told me when I asked.
If needed, Jeff, and/or a friend will be running the office for me, answering the phone and helping customers as they can. Note, too, that custom items and repairs may take a little longer to provide while I am in recovery.
I thank all of you for your support.
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December 13, 2018
Met with a neurosurgeon at Stanford. It was a somewhat short visit (compared to others). An intern came in and review some information, and asked a few questions to add to the reports. He then went to discuss my case with the surgeon. A few minutes thereafter, they both came in to see me. More questions were asked and answered from both sides. A clear model was brought in and we were able to see just where the chip was planted and where it would go. The chip is a little bigger than I was told by Dr Meador, who told me it’s about the size of a quarter. The chip is actually about an inch and a half long, about an inch wide, and about an eighth of an inch deep. It’s curved to fit the side of the skull better.
This chip is implanted toward the back of the head, behind and above the left ear. It has two wires that will be directed in different areas. When seizure activity begins, the wires send a message to the chip, which sends a message back, telling the seizure to stop.
The chip then records the activities and sends it to a separate box, which is what I then use to send the report to Stanford’s computers for their records. This chip does not 100% guarantee no seizures, but at time its the result. The main thing is that the seizures are less intensive and less frequent, if nothing else. Hopefully, for me, it will help control the seizures completely. But, with my past experiences throughout the years, I’m not holding my breath.
If you’d like to read more about the chip:https://tinyurl.com/y7tse9aw
Next step is for me to schedule the surgery. I am thinking the latter part of January would be best for me. It will give me a chance to get things in order at the office and shop, and I can give my customers a heads up on production times and such.
I asked about time in the hospital and recovery time. The surgery time is about three hours. They will need to shave the head to be able to get to where they need to. Usually, if all goes well, I will be in the hospital for a night. If they find they need to keep an eye on me, then possibly 2-3 nights. As far as outside recovery time, it’s a matter of taking it easy for at least 2-3 weeks. I can come back to work, but on light duty. Nothing strenuous, so my customers will need to work on hanging and taking down suits and such. Luckily, I know they will be glad to help.
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October 31, 2018
Visited with Dr. Meador at Stanford again. It wasn’t too long a visit as I knew what I wanted to do. The answer was simple, the chip over the removal of the scar, as I didn’t really want to lose anymore of my memory than I already have. That would be too much. In the meantime, we have changed the medication levels, but although they are less frequent, the seizures are still happening. I think it’s time. My first appointment with a neurosurgeon is on December 13th. I am thinking it is during that visit, we will set a date for the surgery, implanting the chip.
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July 27, 2018
Visited with Dr. Meador again at Stanford University. This was the first time I had seen him since last July. All the tests and such were done by a team of doctors at Stanford Hospital. They all sent their reports to Dr. Meador throughout the last year. He went through test by test, explaining what they did and what they were for, along with the results. With these tests, they were able to confirm their idea that the seizures were coming from the left lobe. One thing they found was a scar about the size of an adult little finger. One of the choices was to remove the scar with laser surgery. But, there was no guarantee that it was the cause of the seizures, and the downside was that I would end up losing some of my memory. I certainly didn’t want to lose anymore than I already have with everything I’ve been through all these years.
The other option is to implant a chip. It’s about the size of a quarter, and is implanted onto the outer skull. The chip is thin enough that there won’t be anything seen once it is in place. Attached to this chip are small wires directed in different ways to where they think the seizures might be triggered. Basically, when there is extra action in the brain and right before I feel the seizure beginning, a signal will be sent to the chip, and the chip will send another signal “telling” the seizure to stop. With this chip, wires can be added or removed as needed. My thought is that the number of wires can be changed, whereas there’s no replacing the scar once it’s removed to change the outcome of the surgery.
Dr. Meador suggested that we go home and think about it and come back in about four months and we will discuss it again. We discussed it on our way out, and I am pretty sure the chip is the way to go. I will be seeing him again on October 31st.
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For the next four months, I went through a number of tests. Mostly MRI’s as they tried to figure out just where those seizures are coming from. The drives up to Palo Alto and back got more an more tiring, as the tests got longer (or seemed to be) every time I went in.
March 15, 2018: Funtional MRI...This test was interesting, but tiring, as it was a four hour oral & written test. This was to test my memory. The first test was with photographs. He showed me 50 photographs of faces, then he took a second book, showing me photographs again, with some faces the same and some different. I was to identify which photographs I had seen before, with either a yes or no.
The second test, he verbally listed 20 words. I was to repeat words that were in that list. (not in any particular order, thank goodness). Then he gave me a second list. I was to do the same...then list off the words I remembered from the FIRST list.
The third test was with sketches of items...planes, cars, animals, etc. I was supposed to identify verbally what was in those pictures, then what they did, then what we used them for.
At least another dozen similar tests were giving, and occasionally, I was to asked what I’d remember from that first list. The very last test was to again, identify the photographs I recognized from the batch of faces I had seen in the very first test.
At the end of the day, I fell asleep on the way back down to Monterey, slept well that night, and ended up being groggy on Tuesday while at the office. Luckily, the day at work was slow.
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October 16,2017
First test...a four day EEG. Wasn’t sure just how long I was to be in the hospital, it all depended on how long it would take to actually have a seizure so that they could record the brain activity. They told me it could even be up to a week, so be prepared and bring stuff to do. My mother came over from Maui to be with me when I told her I could be there for a little while. The hospital said that she could stay with me if they were able to get me a private room. Unfortunately, the first night was with another woman, but the rest of the time I was up there, I had a room of my own and they provided my mother with a nice cot.
On Monday, they pasted at least 20 probes around my head and set me up. Time to lay and wait. The first couple of days there were no seizures, until Tuesday night. Then I had another one on Wednesday. They were going to release me on Thursday. I had one on Wednesday night as well, while I was asleep.
Thursday morning, I was dead dog tired, feeling like crap with all these probes stuck to my head and was so happy to have them removed.
Before leaving on Thursday afternoon, we were able to go and see just what the recordings looked like. We saw an enormous amount of activity during the seizures. One thing that they said was that they seemed to come mostly from the left side.
Mom drove me home to Monterey, then back to the airport in San Jose.
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July 26, 2017
My first visit to Stanford University was on July 26th, 2017, where I met neurologist, Dr. Meador. He looked at my history and was very concerned that nothing had helped me as it should have. He told me of the tests that he wanted to order, that Stanford Hospital is learning hospital and that a team of doctors will be working on my case, so to expect a number of doctors.
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