Prayers are requested for Luke Tegtmeier, who posted the following on Facebook on December 13:
I’d like to share a major personal health update for those of you who might be interested.
Super short version:
On November 30, I had a seizure. Thankfully, my brother was eating breakfast with me when it happened. I spent three days in the Wooster and Akron hospitals, where I had another seizure. It was determined that I have a cyst in my brain causing the seizures. Surgery to remove the cyst will have to wait for my fractured neck vertebrae to heal (about 6 weeks). Many more tests and details to be determined.
Currently, I’m not really allowed to be alone in case of having another seizure. Of course, I’m not allowed to drive or operate heavy equipment (or climb into pipe organs!). So I’ll be living with my parents for about 6 months as I’m worked through this process.
I’m EXTREMELY grateful for my wonderful family – especially my should-have-been-a-nurse mother, my semi-retired dad, and my sister and brother-in-law that are easily able to drive me to a work colleague’s house for me to go to work. Also super grateful that my brother was with me when the first seizure happened. An hour later, I probably would have been driving to Holmes county to buy a piece of furniture – scary to think what might have happened there, or inside an organ chamber, or while I was doing almost anything alone in my house!
Also feeling deeply blessed with my workplace – I have wonderfully kind, flexible colleagues that are happy to keep me busy with a nice mix of office work and light pipe voicing, while they take on the more complicated travel and tuning work that I would normally be doing. They’re also very kind to drive me around.
Some more medical details in case you’re interested:
For the past two years or so, I noticed that I would occasionally struggle to come up with words. Not just failing to remember names; I would not be able to use the English language for a few minutes. No one ever really seemed to notice this behavior, and I was never able to truly document it. I now understand that this is called a “focal seizure”, and doctors tell me that it makes sense given the placement of my cyst, which is on the left side of my brain over my short-term memory (so if I can’t remember your name, I have an excuse!!). I’ve never claimed to have a particularly strong memory, so I’ll be very curious to see if that improves over the next year after the surgery happens!
I have no memory of actually going through the seizures. Mark says that I gave him his oatmeal, sat down, but then “froze” with an arm outstretched, and fell off the counter stool. Probably hit the floor fairly hard. But I woke up, and actually walked out to the ambulance on my own feet (don’t remember that!). My memory from the time in the hospital is very unclear. My left shoulder was hurt somehow in the fall – I’m still being very careful with it two weeks later, but nothing was broken there. The X-ray told us it was a “soft tissue injury”.
However, vertebrae C7 is “marginally cracked”. This is apparently pinching the nerve that goes to my right index and middle finger tips. At first, they both had very strong pins-and-needle feelings, making me nervous about continuing as a keyboardist! But I’m relieved to report that the middle finger is already almost completely healed, and I think I played church basically fine last Sunday. The X-ray also showed that T5 (mid-back) had a compression fracture, but no Doctor ever mentioned this to us.
One of the few things that we know so far is that the neck fracture needs to be completely healed before we can think about the brain surgery to allow the brain surgeon to move my head freely. So the neck Dr. will look at it closely on January 14. The neck brace is the biggest frustration overall at this point – it tends to exhaust my upper back causing soreness. But thankfully, this soreness goes away almost immediately upon lying down.
It was a real learning curve trying to rest in a bed starting in the hospital – I have discovered how hard it can be to get in and out of bed, and how hard to even roll over when you’ve had a major health issue occur! Wow! I’m deeply thankful to report that I can now get in and out of bed in a relatively normal way again. Also very happy to report that I’m sleeping very well – the neck brace is actually kinda nice for sleeping!
The main medicine that I’m on to help with the cyst is called Keppra. It’s supposed to stop the seizures that are caused by the cyst. I’m relieved to report that I haven’t had a seizure – of either kind – since starting that medicine. And no one has noticed any side effects (basically irritability) since I’ve started it. But of course I will be very limited in my activities until about 6 months after the surgery to remove the cyst – no driving, climbing ladders, or even being alone. Hence living with my parents for the next 6 months or so.
While in the hospital for 3 days, I had 3 CAT scans, an X-ray, an MRI, and a brief EEG.
On December 26, I’m scheduled to spend 3-5 days at the Cleveland Clinic where they will monitor me closely to observe more clues about the effect the cyst is having on my brain, so that they can plan the surgery carefully. This will include a Neuro-psych test and a functional MRI, plus others if they can fit them in.
I’ve had nothing but very positive experiences with all three main doctors so far: Bingaman will be the one leading the surgery, but he is planning to reach out to another surgeon because it will involve a slightly different part of my skull than his usual area of expertise. Dr. Nwachuku is watching my neck vertebrae, and Dr. Galla was a very kind and patient doctor to explain my Epileptic seizures, and what to expect in the future. My understanding is that my seizures can be described as Epileptic because of the nature of them. But I do NOT have Epilepsy.
Similarly, I have a brain cyst, which is technically considered a brain tumor, but it is NOT cancerous. Far less dramatic, thankfully.
While I’m certainly not happy about this medical event, in many ways I’m thankful that it’s happening to me, instead of so many of you, my friends. I have no children to worry about, and I’m DEEPLY blessed with family close by that is especially talented at caring for me. I’m also basically a pretty healthy guy – super proud that I ran a 5K with my brother on Thanksgiving day (9:13/mile)! (Why didn’t the seizure happen while I was running??) And nothing else is really wrong with my body. And my work is flexible enough that I can continue to work (and earn money!) while waiting for more details on the medical treatment to expect.
So overall, I’m actually in a great mood about all of this!!
If any of you have insights about brain cysts, I’d be curious to learn more. The internet is overwhelmingly full of details, but we are finding that the details tend to not quite line up with our understanding of my particular situation.
I’ll do what I can to share updates as I find out more about the process I’ll be going through. Deepest thanks to you all for your prayers and thoughts as I work through this process.
December 29 update:
As most of you know, on November 30 I had a random, completely unexpected seizure that sent me to the hospital. Here’s an update for those who are interested.
First, I am happy to say that I have not had an unexpected seizure since starting my medicine. The pins-and-needles on the tips of my right middle finger have disappeared, and the index finger has improved significantly (the nerve for these two fingers is “pinched” by the fractured C7 in my neck). My family has not observed any negative side effects from my medicine, and I feel that my service-playing for Advent and Christmas Eve went just fine.
I’ll be continuing to wear a neck brace to help my fractured vertebrae heal, and that is actually the biggest frustration because it tends to make my upper back a bit sore. But even that soreness disappears immediately upon laying down to rest. The other frustration has been spending a lot of time awake in the early morning. But after experimenting with several variables, I’m convinced that this is caused by the steroid they prescribed for me (to keep swelling down in my brain). And I’ll just start taking the steroid at lunchtime instead of dinner time to help me sleep better.
The biggest update is that on December 26 my parents brought me to the Cleveland Clinic Epilepsy Center, which seems to be a real leader in the world. Apparently there are patients here from all over the world, but I only had an hour commute! Another blessing!
I started my visit with two more tests: an EEG scan (25 wires attached to my head to read brain waves) and a PET scan . Then moved into Room 14, where they attached a few more wires to my body, and started a video recording of me. The hope was that I would have a seizure, and they could have a video and EEG (VEEG) of it for the doctors to study. This information would then help the surgeon determine exactly how to move forward.
Normally, they would have taken me off my anti-seizure medicine (KEPPRA) to encourage my seizure to happen. But they were very concerned about doing this, since a seizure could affect my fractured neck. But after nothing happened for the first 24 hours (as I expected), I told the team that I felt very safe in the Clinic, and would be happy to go off my medicine so that the seizure would have a better chance of happening. The medical team discussed this, and agreed that they would go ahead and stop giving me KEPPRA (my last dosage was Friday morning). Because of the higher likelihood of me having a seizure, I was required to stay in bed or a special chair at all times except brief bathroom breaks.
To encourage a seizure to happen, they also encouraged me to not sleep. So Friday and Saturday night I stayed up until 4am, and then just slept for 2 hours! Interestingly, I stayed awake mainly by playing Irish Session music on a little keyboard (with headphones) to entertain myself. If I had just been reading a book or even watching TV, I probably would have fallen asleep!
The best news is that this morning (Sunday) I had my seizure, as desired by the medical team. Like the other two that I had at the beginning of this process, I have absolutely no memory of it happening. In my memory, I had taken a few bites of breakfast, and then I woke up with my Mom asking me questions. It turns out that she was the one that noticed my seizure starting, so she pressed the emergency button for the nursing team to come and take care of me. The seizure lasted about 4 minutes, then I went into a deep sleep for about 15 minutes. Then apparently I woke up enough to ask Mom some odd, illogical questions. Then a few minutes later my mind actually “booted up” and I asked Mom what had happened. She laughed and told me about my seizure.
So I finished breakfast, took my pills (including Keppra, since I had the seizure that we all wanted), and took a 2 hour nap. Later in the day, the medical team came to talk with me. Not really much to share, but the team here gathered enough information during my seizure to help them prepare for my surgery. They want me to stay in the hospital for about 24 hours to let the anti-seizure medicine do its job.
I’ll be doing two more tests in Cleveland Clinic (FMRI test and Neuropsychology test) in the next few days. And hopefully I’ll be able to stop wearing the neck brace in mid-January. This would allow the Epilepsy surgery center to do my surgery in mid- to late-January.
I continue to be especially thankful for so many things going well in my life: my parents housing and feeding me, my sister and brother-in-law taking me to work, my brother loaning me his iPad while I’m at the hospital, and my whole family having a wonderful Christmas party on Christmas day. My coworkers have also been great at helping me stay busy and getting me out to work. But my mother gets the deepest appreciation by far. She insisted on staying with me at the Cleveland Clinic for my entire visit, from Thursday morning until my Monday discharge. I kept telling her that I feel very safe, and have truly enjoyed getting to know all the nurses and PCNAs that have cared for me, but Mom refused to go home. I’m also thankful that I have not had any real negative side effects from the prescriptions.
Mom and I have also agreed that these 4.5 days at the Cleveland Clinic have been sort of like a vacation, because we’ve been forced to slow down, and can’t do much work. In certain ways, I’m even glad that I had a slight cold and the neck brace for my hospital stay: if I had been completely healthy, I would have been “twitchy” to do something physical, whereas those two factors helped to force me to slow down.
Many thanks for all the kind thoughts and prayers from so many of my friends. I’ll try to keep sharing updates as more information comes forward.
