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: