Results of the Tests

Last week, I went back up to Stanford to see the original doctor I saw in August 2017.  I didn’t see him during the times that I was going through all the tests, but he was the one who originally ordered them and received the results of the tests.

During the visit, he went through each test with me, explained why each test was taken, and the results of these tests. Overall, they found a scar about the size of a human pinky in the left side of the brain.  They are unsure if it’s the only reason I am having seizures, but it could be a big part of it.

He is afraid to remove it with laser surgery, as it may affect my memory system, which I must admit, I’ve already lost a bit of it.  But, yes, I can understand that.

What he suggested is a chip. He showed me what it looks like and what it does. It’s about the size of a silver dollar, maybe a little smaller. It will be implanted on the left side where my seizures tend to start.  What this chip does, basically, is it watches for seizures to begin, and when they do, that chip activates and stops the seizures from going any further.  If the seizures are starting in other places, wires can be added and directed in the directions needed. Wires can be placed and removed as needed.

We agreed that the scar, if removed can never be replaced, whereas, if a chip is put in, it can always be taken out.

My dosages of medications have been changed. One has been increased, while the other has been decreased. If that works, we may not need the surgery at all. I will be seeing this doctor again in four months to see how I’m doing on the new dosages of the medications.

Time will tell.

Remembering David

David is dearly remembered today on what would have been his 50th birthday. It’s been five years since I’ve had the chance to call him to wish him a great day. The only thing I can do now is go sit at the beach and be with his spirit.

Continuing MRI’s

I have just taken my 5th MRI, and will be put in again in May. I must say that the more I go up there, the more tired I get. The travel time from Monterey to Stanford can be a two hour drive, depending on traffic.  This last one, we got up there early, earlier than I had expected, so I sat in the waiting room for a considerable amount of time. Luckily, I had thought enough to take my quilting project up with me, just in case.

Of course, all of the MRI’s I’ve taken are different. The last one I had taken in February was a functional MRI, in which I needed to remain awake and identify items on a screen and just what they do and what their functions are in our lives. I almost fell asleep during the ‘breaks’ but they wouldn’t allow it.

This latest one was what they called a PET MRI.  During this one, they wanted me to relax as much as I could. They even allowed me to sleep, stating that it would be great if I could. The first half hour that I was there, they put me in a dark room and told me to relax. I was so tired from the drive, that I closed my eyes and was almost asleep when I was interrupted by the gentleman who was assigned to take care of me.  He came in with an injection of some kind of radiation, then left me for another half hour, hoping I’d go to sleep again.  I was close, but not quite. 

He then took me into the room that included the machine and computers, where I was introduced to another technician.  When they were laying me on the table, I was so groggy, I had a hard time getting myself settled without help. I just about fell asleep before they got me completely into the machine.  I was in there for about an hour, but being that I was sleeping, it didn’t seem like it had been that long when they woke me up.

The ride home was a bit longer than the one up to Stanford. I tried to sleep through it, but for some reason I couldn’t. I just closed my eyes, but there were too many thoughts going through my mind. Mainly what are they going to find, and just how many more tests are they going to put me through before deciding just what they are going to do and where.

I must say that this test exhausted me. Not that the others didn’t but it took me about three days to fully recover, and on the fourth day, I had a seizure at 6:00 in the morning, and when I an writing this 12 hours later, I am still feeling the side affects.  I am pretty sure that this is due to  lack of sleep the last couple of nights.

I am hoping that I will be seizure free by the end of the year, with either a computer chip implant or laser surgery.  I’m tired.

Pier 39 and the California Sea Lions — Incidental Naturalist

A business trip to San Francisco presented me with another classic incidental wildlife spotting opportunity. I had read about the legendary Pier 39 and the California Sea lions that spend their days sunbathing there, so I tagged a weekend on to my trip, and after a great day of photographing hummingbirds in Golden Gate Park, I […]

via Pier 39 and the California Sea Lions — Incidental Naturalist

Functional MRI

On Thursday, January 25th, I went back to Stanford for another test.

It’s what they call a Functional MRI, basically what they told me, to find out just what part of the brain works more to answer the questions they are asking. The questions were very simple. Any five year old could answer them.
First they had me watch a 15 minute video, so that I would understand just what I would be going through, very simple, and of course, very noisy, as an MRI usually is. When I went in, I was greeted by two very nice young men who helped me prepared. Of course I couldn’t wear my own glasses, so they gave me a pair of plastic one as, as many know, I am practically blind without them. Their glasses made me see double, so I had to close one eye to see the screen at some points.
Unlike my past MRI’s, they situated my head into a frame with a small screen above for me to watch during the few tests that they did. The instructions for this test were to not speak the answers, but to think about what I was seeing on the screen.
The ‘questions’ were pretty easy and included drawings to identify. They showed three items, one at a time, with a 15 seconds between. Say, the first sketches were an airplane, an apple, and a boat. Fifteen second of a blank screen, then the next three were a house, a bicycle, and a car, etc. After five of these, they’d start then next group. Where I had to not only define them, but also explain what they do or what they were for. Say, the airplane was to fly in, the apple was to eat, the boat was to ride in or go fishing in. There was not right or wrong answer, they just wanted to know just where these answers were coming from in the brain. The next was for me to identify what the object that they were describing. Say on the screen was ‘something that you drive’. They answer would be a car. “A big pink bird”. Answer being a bird, etc.
In another test, they asked me to move my fingers in a specific way. I had to touch my fingers with my thumb in a particular order. Forefinger, middle, ring, little, then back. Did that a number of times, then the screen told me to rest. Then again. Then rest. After that was done a few times, they went on to the next test.
All this while the machine was going between each of these tests for certain amounts of time. Each time, one of the guys would tell me, ‘you’ll hear the noise for one minute’, or for six minutes. What ever the time was, he would tell me before turning it on.
The entire test took about two hours. I had to lay still in this machine for the whole time, and you all know just how hard it is for me to sit or lie still for even more than 15 minutes. lol Someone will call me soon with a report.
The next scheduled appointment I have is in March, but they may call me to come up beforehand for more. Who knows, I just need to sit here and wait for it. Once they can find out just what side is more active and just where those seizures may be coming from, they’ll know just where to concentrate on during the surgery.
The test was very draining, my body and mind were and still are very tired, and I woke up this morning with a mean headache and ringing in my ears. I took one of my migraine pills and hopefully, that will help me out today.
I am sooooo looking forward to being seizure free, and like the doctor said after my EEG, to be “off the poisons”!!

Stanford Hospital

(I thought I had posted this earlier, but it came up as a draft)

On October 16, I checked into Stanford Hospital to be hooked up to an EEG machine for longer than the few minutes at my local care facility. In the past, my tests didn’t show anything as I did not have any seizures during the time when I was hooked up.

When we arrived (my husband was driving) the front of the hospital was super busy with what looked like valet parking, something we didn’t need for just a drop off. I got out of the car and he drove away. I entered the hospital and found my way around the hustle bustle, as I had directions to where I was going. In the neurological section, I was greeted by a young man who knew who I was, as I had called before leaving Monterey and told him that I was on my way.

Although I was set up in a room with another woman, we had to wait until one was available. I had no problem with that. The only reason I wanted a separate room was so that my mother could stay with me. Luckily, she had in-laws she could stay with in the meantime.

Shortly after I arrived, I was set up in bed with 24 electrode pasted to my head. The doctors came to visit me, and my mother arrived, as she had flown from Maui to be with me throughout. She and I have been through so much with my epilepsy and this was just another step for us. We both wanted her to be there. That night, they took me off one of my meds to try and encourage a seizure to hit. The gave me a button to push if I should ever feel a seizure coming on. They had a 24 hour/day monitor on me so they could keep an eye on me in case I needed some extra help.

Supporting Marine Science Students

     Since 2001, my business, Otter Bay Wetsuits has been supporting our local marine science students by giving a custom made suit to a lucky student winner.
     In the fall I send out applications to the instructors at our local educational facilities, and they are to select their most deserving student. Someone who studies and works hard with interest, someone who has future goals in marine science, and to top it off, someone who needs and would appreciate a custom wetsuit, making it easier to concentrate on their studies.
     The instructor has a month or two to pick the appropriate student, and the selected has until Christmas to send in their application, which asks for their area of studies and where they plan to take that knowledge in the future.
     We usually get four or five applications back, and have the painstaking job of selecting one of the recommended students. It’s not an easy job, and we wish we could give them all a suit, but it’s just not in the budget, at least not without help. Occasionally, we’ll get a donation, surprising our second place winner.
     Recently, at the suggestion of a friend, we opened up a GoFundMe page, hoping that there are others out there who would like to support these students. All donations go towards materials and labor put into the suits.
     All of our suits are custom made from scratch to 60 measurements provided. We begin by making a pattern, then the material is cut, the suit is put together, and then sewn. When the students come in to try the suits on, we make sure that they fit perfectly, with the purpose of keeping them warm. We have gotten a lot of comments telling us that the are able to remain in the water for a longer period of time, concentrating on their studies rather than on their body temperature.
     If you’d like to learn more and see photos of our previous winners, take a look at

Off to Stanford

It’s been a very long time since I’ve posted and a lot has happened, I don’t think I should put it all in one post, so I’m going to separate all of them.

The most important is about my epilepsy. Two years ago, I met a new neurologist. A very caring one. On our first visit, I walked in wearing my SF 49’ers sweatshirt and my husband had is SF Giants t-shirt on. The first thing my doctor said was that we were going to get along really well, as he is also a big San Fransisco fan. And sure enough, we do. We talked about what I have gone through during all the years I’ve been having seizures, and I could tell that he was upset, that I couldn’t be helped. The last thing he promised was that if he couldn’t do anything for me with medications and treatment, he would send me up to Stanford in Palo Alto, where there is a epilepsy center. I literally cried on the way out of his office as I was overwhelmed.

Throughout the month, we tried different medications and different doses. I could see that every time I stepped into his office to tell him that the seizures were continuing, that he was very disappointed.

The last time I saw him just a couple of weeks ago, he was very sad to admit that he didn’t know what else to do. He was putting the request in to send me up to Stanford. Again, I cried on the way out of his office.

I got the call last week to make an appointment. This first visit will be just a consolation visit. They will basically find out more about me, more about the kinds of seizures I’ve been having so that they can determine just what I need. Once that is over, we will make a plan to have me up there for treatment.

Who knows what that treatment will entail and how long it will take. Could be a day, could be a couple of days, could be a week or more. We just won’t know until it is determined just what I need. When I got off the phone with her, I was so overwhelmed. The thought of it all really sunk in.

There’s part of me who is very excited and another part who is a bit nervous, not knowing just what I am stepping into. But from what I hear from others, Stanford has the best facility around. It would be wonderful to finally be seizure free and be able to enjoy the things of life I’ve had to let go of.