Neurology Appointment 09/30/14

Jeff and Ashley went with me to my neuro appt today. Sigh, apparently, Stacy and Ashley went to my appointment with me last time [ ] and although I can sit here and read all about it… I have no memory of it?!? I’m a little startled/alarmed, to say the least! 🙁

Obviously, I’m having memory issues but I guess that’s the “new normal” for me. Using the past several months as a baseline, I guess I’d describe life as “new normal.” Head hurts but with a combination of “dealing w/ it” and managing pain w/ Tylenol and “resting when needed,” I can usually function. I do have days where I have to abruptly stop what I’m doing but I guess we are all becoming accustomed to “new normal.”

I teased the doc today, that I’m allergic to him, because yesterday my head really started hurting again, enough to stop me in my tracks again. 🙁 I took several showers overnight vs. drugs so that I could participate in the appointment and “show him what’s up.” My left arm still does the crazy “gets really cold and tingly.” Doc talked to the surgeons but at this point the consensus is that anything invasive could cause more harm than good. Also, the aspirin back in April, really didn’t make a difference and could also cause more issues so we aren’t doing that again either. Doc asked if I sleep elevated, and I replied sometimes. “Often, the pain doesn’t allow me to lay flat and other times I wake without the pillow. So I figure, my body’ll let me know what it can/cannot do…. or I’ll wake up dead.” They (Doc, Jeff & Ashley) didn’t appreciate my humor much. 🙂

Since this is “new normal,” I’m pretty sure this will pass again, eventually, w/ pain management and “keeping off my head” for a while. While I can’t say “it only lasts 2-12hrs,” usually within a couple weeks, it’s subsided enough where I am back to “new normal.”

Some of you have asked if my head still hurts. Yes, it pretty much hurts all the time. It’s still hard to describe. Sometimes, it’s pretty sharp pain right above/near my left ear and if it’s sudden, it’ll take my breath away and literally stop my in my tracks. Sometimes is a “heavier” pain that kinda starts up by my ear and aches thru my neck and shoulder (often my left neck near shoulder is very swollen, obviously draining slower). I cannot do too much when it’s like that either. Both of these often affect my thinking, vision, speech and left arm movement. If the coldness in my arm shows up too, I need to immediately lay down and “get off my head.” However, most of the time it’s like… more than a headache… like someone has put a very tight, heavy helmet on my head/neck (but only on the left). So it hurts, but as long as I don’t make sudden movements or encounter sudden LOUD sounds… I seem to be able to function. It’s slower than I prefer and I can do less, but for the most part, I truly don’t think “YOU” would notice, not until you spend some “quality time” with me 🙂 So yes, my head hurts “all the time.”

I’m actually more concerned about the memory issues… Basically, I’ve described it as “IF, I knew something prior to clot, I can usually get it back, sometimes I need your help remembering, or getting the correct words. BUT… if it’s been “since clot” I cannot guarantee I will remember.” 🙁 I’m actually glad that I’ve been journal/writing/blogging for years (18?) and that’s a habit, because it seems that’s the only way I’m gonna have “memory” of “new” things.

Appreciate all your thoughts and prayers!

Previous MRI images:

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