My day yesterday started bright and early at the Neuro Ophthalmologists for follow up testing. My previous visit with them went great: optic nerves in both eyes showed significant healing and my eyesight was nearing 20-20 in both eyes. Inflammation surrounding the vessels in both eyes was receding as well. My field of vision test came back incredible, and at that time, Dr P. was blown away, especially with the massive improvement my right eye had made. Well, now we ran all the same tests, for the third time. Scans, lights, lasers, eyepatches, the works. The tests came back fairly positive, and while I was talking with my Dr. at the beginning of the appointment, I mentioned this spot that wouldn’t go away in my right eye. It’s especially bothersome when I am talking to people because I can only see their eyes, the lower half of their face is gone. It’s very distracting, and I never realized how much I relied on watching peoples mouths to hear what they were saying better. He said he noticed my eyes darting around a lot while I was talking, little movements I probably don’t consciously notice, but it made him turn to the page with the results of my most recent field-of-vision test. My stomach sank. Imagine a circle divided into four quarters. The bottom right corner of the test was almost completely black, meaning almost completely blind. Now I’ve had this spot since I woke up from surgery, so we were curious why the last test shows perfect vision. He reviewed it and believes it was a faulty test all around. It was almost too perfect, and I have been experiencing this all along. This bad spot also matches one of the worst spots pre-surgery, so it makes sense. That made me feel a little better, and he assured me this was not regression. He explained to me that my brain is darting my eyes all around to gather as many little details as it can to fill in this spot of missing information. It continues to do so because almost as quickly as it gathers that information to fill the void, it loses it. He hopes this spot will continue to diminish, but seeing as it has stayed steady, he kindly made sure I was aware that might not happen. He assured me though that the most likely scenario will be that my brain gets better and better at filling in the blank spot, and I will get better at ignoring it. It doesn’t affect my driving or walking or pretty much anything else. It’s just pretty annoying is all. We will see him again in the beginning of August to check healing/progress and monitor this blind spot.
From there we grabbed a quick bite to eat and headed down to Skyridge for my MRI. I have had a lingering dry cough for a couple of days, and was dreading trying to hold still for the entire hour-long scan. My nurse was great and assured me that she could always restart that portion of the scan and I should try and not choke myself! Well, I made it through most of the scan when a huge cough attack hit me. I didn’t think fast enough to hit the panic button, and before I knew it, the coughing got way out of hand and my heartburn kicked in. Coughing+heartburn+laying flat on your back with your head strapped into a cage= Disaster. Yeah, I threw up. In the MRI machine. While the nurse was trying frantically to pull me out. I always get so nervous about making a racket and messing up a scan. I feel guilty about moving my jaw just a little even though I know that wouldn’t make a difference on a brain scan. Well I don’t think it gets much worse than chocking and flailing like a fish out of water and then, yes, puking. I was mortified and when I told Blake about it immediately after, I was half laughing, and half crying. Weirdly enough, I am not as afraid of my next MRI because I literally can go no lower. I’ve hit rock bottom in the MRI department and now they can never be this bad again… right? I actually really don’t want to be proven wrong… Anyways, the nurse was amazing and sweet and got me some water but I still had to finish the scan, so back in I went! After the MRI, I had to wait until 4:00pm until we would see my neurologist and my neurosurgeon who would have the results of the scan. I didn’t let myself get into worrying about what it would show because it would make the next four hours unbearable. Instead, I distracted myself with IKEA! It’s right by the hospital so we spent the whole afternoon wandering around that beast of a store filled with pretty things. It worked and before I knew it, we were headed back to get some answers! My first appointment was with my Neurologist. We discussed the meds I’m still on, and sadly, the headaches and migraines that have slowly but forcefully been making their way back into my life. We came up with several different game plans to stop the “boulder” of a migraine before it got rolling, because once it’s going, you really can’t stop it. I will have to carry several different pain killers as well as some form of strong caffeine with me at all times. I need to catch it within the first one to five minutes or else I’m sunk. It’s a tightrope walk I’m going to need to learn because spending an entire day writhing in pain, popping a stupid amount of useless painkillers only to have them come back up within minutes, is not the way I want to live my life, or what I want my boys to have to experience. I will stay in touch with him and will need to see him again in three months. He wanted me back in just two, but was willing to work with us and consolidate our appointments on the same day in August!
From there we walked into the next exam room to see our Neurosurgeon and his PA. They asked how I was doing and discussed the few little bumps I’m still experiencing. My left arm/hand and foot (barely) is still kind of crummy. Certainly better than a month or two ago, but still lagging a little. Back to PT for me! I’ve also been experiencing some harsh neck, shoulder, and spine pain. We are hoping it’s just residual pain from my surgery, and that it will resolve over time. Dr. K. let me know I’m just at the beginning of my recovery. He thinks I’m healing very well and progressing fantastically, but gave me a very good reminder that this is a l.o.n.g. process that I’m just at the beginning of. We asked how long until I’m back to normal, and he said that about 90% of healing will be complete by about six months, but the full recovery is closer to a year. This was both daunting and relieving. I have a long road ahead of me STILL but I have that much more time to work work work! I will work my hardest to regain all my strength or learn to function entirely without the loss I’m experiencing. I was given some shaky and hesitant permission to start running after I asked (begged?) him. He wants me to start very slow and very short in a controlled or at least monitored environment. He is very excited about me getting back to my normal healthy routines and encouraged me to pace myself as well as push myself, advice that has remained invaluable throughout this entire process. Now, most importantly and biggest bestest news of all:
NO NEW TUMOR GROWTH
They removed a large portion of my tumor, and left the dangerous spot. The tiny bit still in there is about the size of a blueberry (kinda looks like one too!). This is a huge improvement from “Golfball” or “Egg” sized which is what they were comparing it to previously! It is sitting not just in the sagittal sinus, but right ON the major vessel we don’t want to even get close to, or look at wrong (probably…). We’d be “in a very, very bad place” according to the surgeons. I’m ok with this! I’m not 100% perfect, I’m still struggling with some similar symptoms as before the surgery, just on a much lower level. This is what my life is for now and to be honest, I’m perfectly fine with it. Navigating appointments, therapy sessions, and hospital bills has been the hardest part of this believe it or not! (I say that now, I probably wouldn’t have said that two months ago!) It’s amazing how much stress has been relieved every time we get to schedule one less follow-up appointment, or schedule it one more month out. I will have followups in August with two of my four amazing doctors, and will not need another MRI until May of 2018!! Of course that is if everything goes well between now and then. I will also see my Neurosurgeon at that time. This gives my blueberry plenty of time to decide wether it’s going to plump up or not. I know I will probably have these scans intermittently for the rest of my life, but that’s alright. Better safe than sorry.
I am and will be forever grateful for these four Doctors who have dedicated so much time and energy into getting me back on my feet. If it weren’t for the keen eye of my neurologist I wouldn’t have even been seen by anyone until march 29th. That is 21 days after my surgery. Instead they took the time, looked over my scans and my file, and decided they really didn’t like the looks of this. They sure didn’t need to and no body asked them to take a second look, they just did. I have no idea what my life would look like right now if they hadn’t cared so much. My poor surgeon and his awesome PA were so kind and endlessly gracious while having to work with me in the hospital for several days longer than we had anticipated. As you can imagine they are crazy busy and never once did I feel that they were rushed or bothered by how much longer I required their care. It was that patience and security that made me feel somewhat stable in the completely uncontrolled environment I woke up to post-operatively. Dr. P., my Ophthalmologist, is literally a genius. I actually don’t know if I’ve ever met someone as smart or as professional as him. And it actually made him incredible at patient care. He was as open as possible about every facet of my case. When we first started seeing him, he let me know he wanted to keep his suspicions and test results to himself until he had time to do some research and collaborate with the rest of my team. He of course ran this by me and made sure we were on the same page through every decision. This last appointment I had with him, he went over my entire case with me, start to finish. He didn’t leave out a singe blip. He showed me the scans, graphs, CT images, test results, and explained each and every one. He gave me ample time to ask questions and think this all through. It has helped me process this entire situation so much more and I will never forget what it feels like to be treated with that level of respect and compassion. In short, I have no idea how I landed such incredible and talented human beings to help heal and manage my mess of a body these last five months. I honestly couldn’t have picked a better group if I had all the time in the world. I pray God blesses the Doctors and their practice, and uses them to bring comfort, healing, and guidance to many many more that come after me.