Last week I had a nerve study test w/ electrodes [ http://blog.scottsontherocks.com/blog/2017/10/09/nerve-study-test-100917/]. Today, was a nerve block test (x2). They injected lidocaine into two different muscles and had me try to raise my arm up and hold it. [Think holding it bent at 90* at shoulder ( like signalling on a bicycle tgat you are turning)].
I don’t know if I’ve been specific about this, but I haven’t been able to hold my left arm up for more than a minute or so, without it becoming numb & weak & getting instantly cold/white. This has been going on since “day one of clot” Even after lowering my arm, my neck will swell up (I often say “like a baby turtle”). It usually takes several minutes for this to occur but it always swells up.
Trying to do physical therapy showed me what I “could” do… but often afterwards (usually when I was back home already), my neck would swell uup for days.
I wasn’t sure what today’s test was gonna show so I had no idea what to expect. [ditto for last week & they ended up torturing me :-)]
The first numbing went into the muscle under my clavical kinda near my shoulder, raised arm…. pretty much same as before, maybe I could hold it a minute or two longer before pain & cold fingers kicked in. And… then neck started swelling too.
When he was gonna numb the second area, it was in the muscle of my neck, right at edge above clavical. When he told me to raise my chin up high, look up & hold it, I instinctively knew this was gonna be a problem because… I can’t do that, not even a little…, it causes severe pain. but hey?!? Look, I can look up?! so maybe that first numbing did something after all?!? He injected my neck and voila, I can look left & right, & up & down & my arm is raised and check this out… my left fingers are WARMING UP?!? what the heck?! I’m clearly a weenie and couldn’t hold it up too long “for strength” but I could raise it back up again.
it’s been about an hour, I can still move my head around & raise my arm (so I’ll probably be super sore from that ;-))
I’m not sure what all that means but it sounds like some sort of surgery to alleviate the vein/artery & nerve pressure is in my future…. THEN, I should be able to do physical therapy
don’t know if/how that will affect head pain & brain clot but at this point I do know that my current arm movement makes it worse (or vice versa or both… vicious cycle) let’s just say “I’m extremely frustrated” that I keep forgetting I can’t really “do that” w/ my left arm. The memory loss is a whole other story but for this blog post, we’ll just leave it at “I forget to NOT use my left arm. I’m both handed… I write w/ my right hand (I used to write w/ either but seem to have lost that for now anyway) but most everything else is left (for example: I bat & bowl & golf & kick, etc left-handed…. or… I used to anyway ) so this little vicious cycle I’m in: does my head hurt cuz I used my left arm wrong (ie. did I forget & try to take down a stack of plates w/ left arm?) & my neck swelled up? or does my neck swell up more when my head hurts? or does my head hurt cuz I’m not sleeping or am I not sleeping cuz my arn/neck went crazy in the middle of the night?
I’ve been tracking my sleep for years now (different phone apps, fitbit, Apple watch)…. and all the devices calculate my average sleep at around 4.1 hrs. I “can” function on 4-4.5 hrs but not so much when it’s closer to 2-2.5…. yes I get “cranky” & my head HURTS on the verge of tears & one little thing wrong will… make me not be fun to be around. However, if I actually get closer to 6 hrs… I actually get stuff done (sometimes I do too much but that’ll kick in later or the next day)
I want to hear all the options but I have to say that even though it seems extremely scary to me, that they might wanna do some major surgery…. I’m not opposed to hearing about that. I’ve done what I can alone (before I found the new Dr’s), I’ve done weeks/months of PT w/ “this is making it worse” results & I’ve tried the “let’s NOT do things left handed ” & I still have the same random “my neck swells up & my arm gets cold” If the surgery will get me on a path to using my left arm (actually having REAL PT) AND that allows me to be more active & possibly allowing me to sleep better & possibly allowing some sort of relief for my head pain….
…lots of IFS
I’ll keep ya posted & and as always, your advice is welcomed!