Lizzie has been slowly losing ground neurologically over the past couple of months. It started with her ataxia increasing and some nausea. Then we started noticing that her speech was becoming less clear, and talking was fatiguing her more. Her headaches started getting worse and Tylenol and ibuprofen weren’t doing the trick for her. Her neurologist tried her on a couple of new pain relievers and migraine specific meds but they didn’t help. At this point she is taking hydrocodone every four-five hours to cut the excruciating pain. She’s also been getting hot flashes, and they’ve been getting much more frequent and sweaty. A few weeks ago she lost her balance while transferring from a chair into her wheelchair and did a face-plant into the wood floor in our family room. Luckily there was no head injury but she did fracture her left foot, as it got caught in the front wheel of her chair when she fell. That’s been making her physical therapy more difficult, needless to say. The list of problems goes on but I’ll skip those details.
She’s had two CT scans taken in the last 4 weeks. We saw the doctor on Monday to discuss her latest CT scan findings. Her fourth ventricle, near the brainstem, has been slowly dilating, causing pressure against her brain stem, and it’s now to the point that she will need a permanent shunt to regulate the fluid drainage. Her surgery is next Wednesday, August 26th. They will bore a hole into her skull low on the back, left side, and run the shunt catheter through the cerebellum into the fourth ventricle It’s a completely separate shunt from the one she already has in her top right ventricle (although Dr. Kim will attach the drain tube with a Y connector to her other drain tube so that he won’t have to cut into her abdomen on the left side for a new tube to be inserted.) This is a much less common type of shunt, with a more complicated procedure, so she will have two top-notch surgeons working together: Dr. Kim and his partner Dr. Patel. A bit scary for us but the docs seem pretty darn confident and we know she will be in good hands. While she’s there, already on the table, etc., Dr. Kim is also going to make a small incision on the right side of Lizzie’s head where the current mesh plate is attached to her skull. The screw has been causing Lizzie a lot of head pain; Lizzie describes the pain as “it feels as if the corner of the mesh plate has detached and is pushing on my head.” Doctor Kim will insert a new screw (along with some other details) in hopes of alleviating that pain. If all goes well Lizzie will only be in the hospital for a few days. It would be really nice if this was the last surgery Lizzie ever needed in her brain. She’s already had 10 invasive brain surgeries (3 were craniotomies) plus 3 cyber-knife procedures, and I-don’t-remember-how-many cerebral angiograms. The poor kid never seems to get a break. But HOPEFULLY this will be the last of her setbacks and she will just keep on recovering from here on out.
But wait…that’s not all…
Don, my husband and Lizzie’s dad, is going to have surgery on August 28th, 2 days after Lizzie’s, to remove a small section (10-15 cm) of his colon. During his Age 50 screening colonoscopy, the doctor found a large (3 cm) polyp. He said it is NOT cancerous…yet, but could (would) become cancerous if not removed soon. Don has already had to reschedule it once due to an unmissable business meeting in Little Rock, so Lizzie wanted to wait to have her surgery until after Don has his. We both told her no way, we are not going to let her get sicker, and that even if they are both in the hospital at the same time it will be ok…we will manage. Different hospitals, but only 5 minutes away from each other.
Sometimes life just sucks! Keep us in your prayers?