Wednesday, November 18
Today was the follow-up visit with the epileptologist. It was supposed to be within two weeks of discharge, and we already had an appointment made since September that we had not cancelled, thinking we might need it.
Salwa was having a fair, or unfair, amount of neck and head pain and fatigue, and she was determined to accomplish this visit. She got up, ate, walked around, and tried to eat healthy.
To keep her cheerful, I hung up the get well cards she has received so far.
She took a long nap to conserve energy. Then she took a shower since she had skipped the night before. That process used up some valuable energy, but it was important for her to feel clean and presentable for the appointment.
We got our masks and her purse with ID, and made the 32-mile drive to the medical center, leaving at 2:45 pm, aiming to be at the clinic well ahead of the 4:00 appointment. We also brought the laptop in case it was needed. I sat next to Salwa in the back seat, and Ibrahim drove. She had a big pillow on her lap in case she wanted to lean against the door.
She tried to keep her eyes closed and to rest on the way, which was a challenge for her motion sickness tendency. We got to the front driveway of the medical campus and stopped. I helped her out and through the door. She was almost hobbling from her degree of tiredness. She put her arm through my arm to steady herself. Ibrahim parked the car and then joined us in the lobby of the neuro clinic. I kept thinking that this visit should have been scheduled for the next week, but here we were anyway.
When Salwa was called back, we both went with her to the door, and Salwa asked if it was okay for her parents to accompany her. The medical assistant said yes. So we went in and settled into the exam room where Salwa answered all the medication questions. By then she was feeling even more wiped out and asked for some water. The medical assistant brought her a cup of ice water and then went to notify the physician that Salwa was there.
The epileptologist came in. He is a very nice person, very smart, and very relatable. He is quite dedicated. Here is a person who went to medical school for four years, residency for three years, and an extra year or two of fellowship training in epilepsy and psychiatry. He has an MD and a PhD. Salwa started seeing him about two years ago. He suggested exploring whether she could be a candidate for the neurostimulator in 2019, and we have been on a path since then to determine this and move forward.
Today he had a student with him who had held a Zoom call with Salwa in September to hear about her epilepsy experience.
There was some initial joking around as he asked her how she was doing after such a big surgery, having her parents wait on her hand and foot, and Salwa laughed, choked on her water, and spilled some on the floor. More laughter ensued. The student got some paper towels for her. The doctor looked at Ibrahim and me and asked how the parents were doing after their daughter has had brain surgery. I said, “Amazing.” Ibrahim said, “It has been intense.”
Then Salwa told the epileptologist about the fatigue, headache, and yet her determination to make it to this visit. He said, “Well, remember, this is a major surgery. They cut through your skull. It will take several weeks for your body to recover.”
He asked if since the surgery she had any kind of episodes like before the surgery. The answer was yes and no, but mostly no, different from before. Then she told him about her small hand feelings, few whole body feelings, and the three head turning/hand clenching incidents, and that these had made her afraid.
I mentioned that she had experienced a sore throat that day, and that maybe this could be her new seizure type during illness instead of tonic-clonic type.
His response was that these might not be epileptic events, that the brain surgery leaves behind debris like blood and small amounts of brain matter — cannot exactly be hosed out — and that these can cause symptoms. Time is needed for healing and absorption of the debris.
He wanted to know how the data downloading and uploading was going. She told him it was fine, downloading nightly and uploaded for the first time on Sunday evening. I mentioned that we wrote down in her journal the times of the head turnings.
He said it was important to keep a log of any episodes’ dates and times to match with the uploaded data in order to determine if the episodes were epileptic or not. We pledged to log carefully if any further episodes occurred.
He then performed a neurological evaluation. He checked her eye movements, grip strength, reflexes, and arm extension, and asked her to find specified objects in pictures in a small spiral booklet. She identified what was asked. Then he asked her to close her eyes and tell him what number he would trace on her right palm. She got two out of three correct. I asked him if it was a fair test given the typical physician handwriting, and we all had a laugh. In general, she checked out okay.
He then tried to pull up images from her brain surgery on the monitor, but it was taking some time. He asked if meanwhile we would like to see pictures of the brain surgery that were on his phone. We were excited to see, and when he pulled them up it looked like they were in a presentation format. I said, “She is going to be presented at a conference, isn’t she!” He answered, “Yes, as part of a number of cases, and there will be an article in a few years.” We told him we would love for him to let us know when it is published, and he said, “Of course.”
He asked again if we were sure about seeing the surgery photos, because some people are not comfortable seeing such images. We assured him we were all quite fine with it, so he showed us the photos. They were fascinating!
If you do not like gory surgery descriptions, you might want to skip down past the not-gory photo below the bullet point descriptions.
To imagine the photo angles, know that the problem area has been on the left side of Salwa’s brain, along the parietal/temporal lobe border, above and behind the left ear. So they positioned her lying on her right side with something behind her back to keep her torso from rolling, and her head was held by some kind of vice to keep it still. The left side of her head was facing up and the photos were taken from above her head and from the left side. It was a robotically assisted surgery; more about that at some point.
The photos showed the following:
- The tray for the neurostimulator battery sitting inside the piece of skull that had been slightly hollowed to fit the device.
- A side shot of Salwa’s head and the surgical instrument table to which was taped her note that said “Give me a nice haircut — and good words!” Salwa remembers seeing the note there.
- A shot showing the hinged up underside of her scalp where the U-shaped cut into the skull allowed the hinging up of part of the skull for brain exposure.
- The exposed brain showing the moist shininess of cerebrospinal fluid.
- The exposed brain with an electrode mesh sitting on it.
- A shot of the area of resection aftermath with some pooled blood.
- Draping around the surgery environment.
We all three absolutely oohed and ahed over the images. We asked what volume of brain matter was resected. He replied that the piece was about two by two centimeters. That is about four-fifths of an inch. (Later Ibrahim remarked he was missing a third dimension that we would like to know.) We were very happy to have seen the photos and learn these details! The epileptologist said he would email the photos to Salwa. We thanked him for sharing. Then the computer monitor finally displayed the image he wanted to show us — a CT scan showing the neurostimulator and leads.
He said we could take a picture of this screen, and we did, so there it is above for your viewing pleasure.
Then he said he was going to see if his colleague was there, and left for a minute. We were not sure what that meant. When he came back he apologized that the neurostimulator company rep was not there. We looked puzzled. He explained that from now on, every visit with him would also include some time with the neurostim device person to go over data uploads and match any abnormalities with the log of symptoms that Salwa is supposed to keep. The doctor said that maybe the person was in a surgery helping with another device implantation, and that he would see about making sure the rep can be there next week for Salwa’s followup visit with the surgeon.
We were a bit surprised to hear that the rep was supposed to be there at visits from now on, but it was good to know, and we were disappointed that the rep was not going to be with us to provide information today, but we took it in stride. I guess we thought that the epileptologist would be the person who read and interpreted the data uploads, but it makes sense that the device rep would do that. Physicians have other things to do with their valuable time. Later, I realized that probably the reason he was not there was because we didn’t call on discharge day to request a post-op appointment; we instead used a previously made appointment to serve for the post-op visit. Things happen, is sometimes our response to such events. I expressed our gratitude to the epileptologist and told him that we appreciate him very much. He said it was his privilege to be of service. I expressed my feeling of being glad to be alive in the 21st century with such hopeful technology available.
He said this good fortune is only available in the United States currently. He said, “If we were in France, we would have had a different discussion.” Her initial evaluation would have ended with “Keep taking your medications and consider getting a VNS.” That is a vagal nerve stimulator and something Salwa never wanted. More about that in a later post.
We said our goodbyes and headed for the car, jazzed about having seen the photos and hearing the hopeful hypothesis that her head turning/hand clenching episodes might have been effects of surgical debris. Although very happy with this visit, Salwa was by now really exhausted. She held on to me walking to the first elevator, and doubted if she could walk to the garage elevator and the car. But Ibrahim assured us that the car was very close to the elevator. She pushed herself along and was okay.
This day called for healthy smoothies on the way home. I had asked our son Sama’an ahead of time to be ready to order for us as he has the Juiceland app on his phone. As we left the parking garage, I texted him our location and how many minutes away we were from the shop. He placed the order, and within 15 minutes we had the smoothies and were wending our way home through rush hour traffic. It felt good to settle into the back seat next to Salwa while our gallant gentleman took us home.
It was a long day for Salwa. But a very full one with good information.
Shortly after we got home, I got a text from the aunt of our son-in-law Chris. She and her husband J had offered to have a meal delivered and it was on its way. It was so nice to see the bag on the porch with delicious Indian food.