I was connected to an EEG for 2 days, that also captured video footage of me. That was a lot of fun…not! I was trapped in the bed most of the time as a result. A new much higher dosage of anti-seizure medication (Keppra), that I’ve been on a low dosage of since the second surgery in August, was found to apparently eliminate all the seizure activity. It has also apparently significantly reduced the long-term numbness I've had in the right leg and foot. They finally removed the leads on Sunday but wanted me to stay an additional day for further observation, medication adjustments, and an additional MRI.
The seizure-specialist neurologist was initially puzzled at my seizures, because I showed some ability to control them with visualization and touch, something that is very unusual for seizures. The EEG definitely showed seizure activity, however. The conclusion was that the activity was very focused in the area where the tumor was removed and largely occurring in sensory areas rather than motor areas. He termed them “sensory seizures”. He has decided that I should not drive for the next two-three months and then be re-evaluated. He wants to be sure that I am stabilized and not in danger of losing control of leg and arm movements, something that could be hazardous behind the wheel. So, while not unexpected, it's a disappointment (actually I’m pretty annoyed and frustrated!). I’ve really enjoyed driving again the last six weeks. It’s very hard to repeatedly lose my independence.
It is not clear whether the root cause of the seizure activity is swelling from the radiation, cell/nerve damage resulting from the radiation, or tumor re-growth. Without surgery, it’s not possible to be absolutely certain. Just part of the nature of this condition. The doctors have prescribed a low dose of steroids to bring the swelling down. Another MRI will be done in a few weeks to monitor the situation.
I began noticing a few days after discharge that the leg numbness was coming back. We recalled that the same pattern had occurred with the January hospitalization and discharge. Susanne observed that a common thread between the two occurrences was that, while I was in the hospital, I was not taking the vitamins and supplements, just the prescription drugs. We first thought that I should go off all the vitamins and supplements, see if the numbness went away, and then step-by-step reintroduce them. Then Susanne had a better thought. About a year and half ago she experienced Vitamin B6 overdose which had symptoms of numbness. I’ve been taking a fairly high dose of Vitamin B6 since December at the doctors’ recommendation to attempt to reduce the neuropathy/numbness symptoms. We decided to see what happened if I just stopped the B6…amazingly the numbness was substantially reduced within less than a day. That vitamin is now off my chart. This stuff can just get so complicated when one same substance can both reduce and cause numbness!!!
I reached a major milestone at Toastmasters this week. The first sequence is completing 10 prepared speeches with specific objectives for each. I presented my 10th speech entitled It’s Your Choice. The objective was to inspire. It was clear from the audience reaction that I had done so. It was great fun.
While I was hooked up the EEG equipment, on Saturday, Susanne started a wonderful weekly study group on a book called “Reflections on the Life of the Spirit”. I felt like I was there in spirit, maybe in an enhanced way from the EEG leads all over my head…who knows. I plan to be at future ones in person!
2 comments:
Craig, thanks so much for the update. I've been checking your blog several times a day and am relieved that you are home. You and Suzanne are a great team of detectives, especially in figuring out that B6 might be having a negative impact on you. Your whole journey is helping us all learn. Thanks for sharing (both of you) so openly and honestly. Being in the "Reflections" group will bring you all great joy. You are daily in my prayers.
s.
The rest of the story…
It was scary watching the seizures happening and wondering if they would get worse and how I should respond. It’s also difficult that the nature of this disease is uncertainty. No one really knows what is happening at the cellular level in Craig’s brain. Except God!
It seems endless, the sitting and waiting at the hospital for hours. And yet, it’s such a familiar place. I know where to go for the best cellphone reception, I know my way in and out of the ER and the routine to valet my car, I know the best times to go to the cafeteria and how to get a tray in the room with Craig, I know where to go to get ice water or find privacy. We joke about the car knowing the way to the hospital…and yet it almost does.
We had a fun time with the EEG machine, getting Craig to do actions and watching the monitor to see what happened. With all the leads on his scalp, scratching his head made everything go crazy. If he scratched his armpit, it barely registered! It was a pain to have an incident happen with the EEG machine, and totally unnecessary. Someone unplugged the machine to move Craig to a new floor without saving the data and shutting it down properly. It extended his stay by a day, and we’ve filed a complaint with the hospital. At least the doctor and tech we dealt with were great. Cheerful, competent, friendly. The doctor analyzed the results in front of us in the room, too, so we could actually see on the screen where and when Craig’s seizures occurred. The doctor even agreed to experiment with a higher dose of Keppra than usual to see if the seizures would actually stop. And, they did.
We are now both dealing with the frustration and annoyance of Craig not driving. It’s a struggle for Craig to lose his independence and a struggle for me to have him dependent on me. We spent time a couple of days after his discharge allowing each of us to share what we were feeling and mostly putting it to rest. Ultimately we are partners in this marriage so we do what needs doing. And…sometimes it’s not easy.
I really don’t like Craig being back on the steroids. He’s higher energy, which is good, but just not quite himself. Hopefully it’s doing some good for reducing swelling in his brain though.
I really appreciated that Craig and I agreed that the spiritual study circle should go forward in spite of him being in the hospital. It was the first session, and we really wanted it to happen. It was good for me to be away from the hospital for a few hours too and immersed in service and love with the group.
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