Today I am exactly 6 months out from my Craniotomy on March 8th, 2017. I am tempted to refer to it as the day that changed everything, but I don’t think it was one exact moment. I’ve played over and over in my head which “moment” it could be. The moment my car slipped just enough, then just enough again, than one more time, tossing me roll after roll down a snowy hill to an icy creek waiting at the bottom. The moment in the ER at 2 AM where a doctor pulled a chair up to my bed, heaved a great big sigh, and told me they found something in my brain. The moment it got really real really fast at my first appointment with my neurologist, where he sent me for an MRI immediately and asked if my insurance was active yet because, “This might be going down tonight.” The moment a month later when a Neurosurgeon told me I probably had cancer growing in my brain. The moment I laid my head down on an operating table, felt the thick sleep come on, and realized this entire room full of strangers were here to cut straight into my brain. The moment I woke up and my sight was taking a vacation, among other things. The moment the ICU nurse tried to just have me stand, and I woke up back in bed. The moments I spent in the acute rehab center, performing seemingly easy tasks like buttoning a shirt or slipping coins into a slot, and having my brain hurt from just that. The moment I got home and realized how much I loved my people and my place in this world. The moment I realized my sight was again fading and my headaches were coming back full-force. The many moments I’ve spent hoping my Doctors could fix me. And now this moment: 6 months of recovering, resting, pushing myself, curled up in pain, squinting through this blur I seem to be in more and more, on such crummy drugs that I just feel like sleeping all the time, yet sleep evades me still. Today, this moment of my life, was spent ironically in pain from an unrelenting migraine. I wasn’t able to keep down my pain meds, any caffeine, heck, even my tiny pathetic dinner came right up. But even through this, my head pounding, ears ringing, sight blurry and double, I was able to see where I am in life. I had a gut wrenching realization that I’m at the 6 month mark. The point where I should be seeing the majority of my healing. The majority of my deficits restored, my energy back to almost normal, my life healing and moving on. Instead, I spent it suffering from the toll this tumor has taken on my life. But I also spent it playing with my babies as we all woke up to a late summer sunrise. We got dressed in the camper that I remodeled and decorated for my little family, and loaded up our laundry to take to the laundromat. After starting a few loads, we washed our car, a car God was kind enough to bless my family with after our Toyota was totaled in my crash. Back to switch the laundry, then we drove down the street to the property my husband and I purchased in May, where a newly framed house was sitting. I walked down with my boys to see the progress being made on this place my husband and I solely designed. I realized through the pain, confusion, panic, unknown, and all the crazy goings-on of my brain, life moved on, and I was somehow moving on with it. Yes, my mind panics about all the issues I struggle with daily, but through that panic, trying to manage said panic, and every other struggle my family has faced this year, I also have accomplished a crazy amount these last 6 months. I’m not trying to brag about how hard of a worker I am because I’m really not. Plain and simple. I’m trying to bring light to the fact that even if your life, health, or finances (or all three) are going to pot, this doesn’t mean your life is only made up of the bad. I don’t think you have a “good” life or a “bad” life. I also don’t know about the “good” seasons or the “bad” seasons. Yeah, my year has been outstandingly crazy, but it’s been a mix of crazies. I have been a patient this entire year. I have also been a mom, a student, a designer, and a wife. I’m not about to rate how well I’ve been at those things, but I have been them. I am grateful that my life hasn’t stopped, although sometimes it feels that way, like it stopped on December 22nd and I’ve been living this nightmare and can’t wake up. But that’s simply not the truth. My life has changed rapidly, but it has changed in so many ways, good, bad, and in-between. 6 Months of so so many things, not just the brain bubble. 6 rich, fascinating, devastating, beautiful months. Here’s to 6 more!
So, I’ve been trying to understand whatever is going on with me before I tell you guys, simply because I don’t really understand it. The more I look into it, the more I realize that it’s confusing to everyone. I’ve found a couple good websites or articles that seem to properly explain this new condition that I might’ve had for a while or just since my surgery, or possibly before. It is called Functional Neurological Disorder (FND) or Conversion Disorder (CD). As I mentioned in an earlier post, when I was just transferred out of ICU after my surgery, we had a random neurologist come in and say I probably had “Conversion”, not really explain it, then walk out. We never saw her or heard from her again. The way she explained it devastated me. When my husband brought it up to my Neurosurgeon, he said no, that the symptoms I had were from the surgery, and that if I did have FND they would dive into that and address it later.
Well now is later I guess! It has been tricky for them to pin down because of the other neurological issues my brain has going on (You know, the tumor and intracranial hypertension). I’m doing Physical therapy twice a week with an awesome therapist and it is helping a lot with about half of the symptoms, such as my balance, leg strength in my left leg, and some of my left arm. However, my hand is still pretty useless and numb on the outer part and my head hurts every day. My vision is horrible and goes in and out and my ears started ringing (LOUDLY) the second I woke up from surgery and haven’t relented for even a second since.
At this last appointment I had with my Neurologist, we discussed my migraines and he’s still waiting to see if this new medication is going to work at all or not, as it usually takes 4-8 weeks of being on it to tell. He doubled the dose I’m taking and then moved on to the other slew of problems that make up the train wreck of a nervous system I have. He let me know that I do still have a brain tumor in there which is buried in my visual cortex/occipital lobe. This could be aggravating my vision issues more than we know. He then moved on to let me know they believe these Functional Neurological Disorders are responsible for a lot of the signs and symptoms they are seeing. He asked if I had already heard about it from my surgeon, and I replied “yes” (even though I hadn’t, it had been from mystery doctor and I never got an explanation. I didn’t think this through and I’m kicking myself for it big time) He kind of took that as “Well, you know then. Alright, see you in two months!” I was pretty upset, because the only explanation I had had ever been given was when I was drugged up, fighting to get back so many things I woke up without, and was told, “Go, like, see a psychiatrist or something. It’s pretty rough. Bye!”
When we left, I was down right mad. As far as I knew, they ran out of options and sent me on my way to go bother someone else. For anyone who has been sick or struggling with something and seeking treatment, you know this is the last way you want to feel. I spent the rest of that week and the next honestly really hating what my body was doing to itself. I still do hate it, but I’m coming to understand it now. While it is “all in my head”, it really isn’t “all in my head”. Hopefully that makes sense to you. I found several awesome resources online which have shed an entirely different light on this situation. They explain it plain and simply as, “I have a neurological movement disorder. It is when the brain does not send and receive messages accurately. There is little known or even understood about this disorder. It has been under-researched for many years, but is finally getting the attention it deserves. I am grateful as researchers around the world are doing their best to find answers. I am hopeful they will then have better treatment plans.” It has helped me understand why I am feeling the way I’m feeling: Helpless, confused, weak, and pretty desperate at this point. I really want to believe that the reason my neurologist completely left me hanging was simply all a misunderstanding. Perhaps he thought I got all the information the first time around, he didn’t know I was drugged off my butt and left without any information or true understanding of the condition. I really do respect and like the guy. Truth is, I didn’t speak up for myself. I got too busy feeling upset and angry about what was being said to me and I didn’t self-advocate. It isn’t fair for me to place all the blame on him when I didn’t let him know how upset and defeated I felt and HOW little I understood about “conversion”. But, he also left me hanging. He wasn’t present at this earlier discussion of the disorder, and therefore didn’t know what information I had been given, or how much I understood. He brushed it off as someone else deal and then left me with no plan to move forward with treating it. He didn’t explain wether or not the PT and meds are to address this issue or one of my other conditions. I’ve spent a lot of the last couple week in utter confusion and defeat. Through my own research and digging, I’ve found out all this useful information which has better equipped me to deal with simple every day life, and while I am still at a loss for what I can do to treat or help this condition, I feel like I actually understand what I am working towards.
So on we go down the seemingly never ending path. Prayers would be much appreciated for strength to take this head on and fight to get back my normal working body, for wisdom for my Doctors, current and future, to know how best to handle a very misunderstood condition, and for gumption for me to speak up when I need to and to seek out the care required to treat and heal this condition. Here goes it. (I feel like announcing “ROUND 3” or something at this point.) For more info, here are a few of my favorite sources: