This week I had so much energy, I had to restrain myself from flying out of the front door and breaking into a full sprint. All I want to do is go for a nice 15 mile hike 😉 It’s a mixed blessing, because although I am feeling good and have lots of energy, I can’t act upon that energy in the way I want. It’s going to be a looong time before a 15 mile hike is a reality! But that’s ok, I’m able to do other things with my energy that still honor the healing that is taking place.
|Our pre-Target selfie|
Whenever Caitlin and I get together, we talk talk talk talk. We can’t help ourselves, it’s just too much fun. Since she lives in Mexico, we don’t get the chance to be in each other’s physical presence very often and we had soooo much to catch up on. Typically, too much talking causes pain in my ear and jaw that will stick around for 24-48 hours, so I’ve had to really monitor how much I talk. But last week I learned quickly that this is getting better. I definitely talked too much each day with her around, but the pain would typically only last 3-10 hours and rarely over night, so that is major progress!
I finally heard back from my UCLA neurosurgeons on the lingering heartbeat that I still hear in my right ear. They officially said it is “not normal to continue hearing it at this stage in my recovery”. They suggested that there is probably another issue going on and that I should continue the investigation with the neurologist in CO. Most likely, it is the brain cysts that are putting pressure on my brain, causing elevated intracranial pressure. One of the most common symptoms of elevated intracranial pressure is pulsatile tinnitus (hearing your heartbeat). So that is really hard. I was and still am very discouraged. I will be seeing a neurologist in CO next week, so maybe we’ll get started down a road that leads to some answers.
Don’t get me wrong, the surgery was still successful. It fixed my worst symptoms (vertigo & constant feeling of an ear infection) and if I had to do it all over again, I wouldn’t hesitate. I’m so so so thankful I had the surgery, I really am. This is just an odd twist, because the pulsitile tinnitus was the very first symptom I ever had and we always attributed it to SCDS. But it looks as if it was actually evidence of something else going on that we just never knew about. It feels a little bit like we’re back at the drawing board when it comes to that.
There are other small and rather insignificant setbacks I’ve had in the last 2 weeks like the continued confusion when there is too much auditory and visual stimulation, or pain/pressure in my ear and jaw if I talk too much. I still get off balance at times as well. But that is all still normal. This is a long recovery, so I’m learning that patience is part of the healing process.