Scotts On The Rocks Blog

I had a realization today that my arm/shoulder surgery area hurts worse than my head. This made me stop and “what’s different?” My head hurts but it’s more like “just a headache”… how is that possible? And my arm/neck/shoulder feels like I had surgery…. but i’m not crippled w/ pain…?!? This prompted me to go get and put on my ring and i was able to take on/off. My arm & hand have been too swollen to wear it. I was standing near a mirror and realized my neck doesn’t appear swollen.

I have done several repetitions of my PT arm stretches today …AND… my neck isn’t all swollen?!?! How is that possible?!?

I’m standing here experiencing a “Twilight Zone” moment and trying to decide HOW i can txt all this to the others. I’m not sure how to word all this so that they don’t think it’s a BAD thing “that my arm hurts worse than my head” Now, i’m talking to myself… “I don’t think a txt is a good idea, just wait until they all get home” “Ugh… I don’t wanna wait… why can’t there just be people here when i need to go into a long in depth story?!”

…and Heather knocked on my bedroom door, and scared me half to death!!!

Her boss sent the whole group home cuz a few had a stomach bug and he was attempting a preemptive strike.

She was extremely confused by my sudden blurting out “(everything I just typed–see above)” She started laughing and said SHE would txt the others.

She txt’d them and they were confused and were all trying to come to my rescue 😉

So i really hope YOU understand “that my arm hurts worse than my head” IS A GOOD THING! 🙂

The stitches on my neck kinda look “funky” today, so Jeff insisted we go have them examined “better safe than sorry.” I have an incision a full 1/4 of my neck and it is “sealed” w/ dermabond (surgical glue) and then covered w/ a strip of tape. The tape is kinda like a translucent mesh. So… you can see it’s an incision, but not the details. Some of the incision kinda look like places have puffy white areas.

I had taken a shower [Side note: YAY! i can raise my arm up & wash my head!] The incision area IS allowed to get wet, so you can imagine my concern when the small little patches of lighter skin were now large, swollen w/ water, white puffy areas. And this annoying tape prevents a good examination by those of us that don’t have medical knowledge! grrr

Fortunately, “my” PA was on duty 😉 She assured us that this is actually new skin growth and she was encouraged by how quickly I appear to be healing. Yes, we are all perplexed ;-P

i came home from hospital yesterday.  i’m moving slowly but i’m encouraged by the fact that i have more range of motion than i had before surgery.  I may regret moving my arm around so much once this numbing agent wears off.

i kinda feel bad that i haven’t kept personally in touch w/ most of ya’ll.  i do appreciate all your thoughts & prayers & calls & notes

[NOTE UPDATE: as of 11/08/17, im definitely feeling the “yup i had surgery “ and i cannot do too much.  but on the flipside of that, i can do a bit more everyday & i’m starting to feel a little more human 😉

many of ya’ll have asked if i’m up for visitors… i think so.  give me/us a holler & make sure i’m up

[MORE NOTES: i won’t be hugging you.  i have stitches around the middle-left side of my neck, completely under my left arm (entire armpit area), halfway down the back of my left arm and my left side/back area.  i also look as if i’ve been mauled along both arms, hands, chest & stomach.  These are from the needle prick things the used to detect nerve status during surgery (glad i was unconscious).  they also blew 3-4 veins w/ iv’s, failed at drawing blood multiple attempts & i had to have shots in my stomach instead of xarelto.  i look like i lost a fight w/ a bull 🙂 ]

I’m having surgery 10/31/17.  Remember those nerve/arterial studies, tests, etc [ http://blog.scottsontherocks.com/blog/2017/10/17/nerve-study-test-pt-2-101717/]  Well… the results were significant.  The short version is that all the specialists agree that I need to have the surgery and THEN start PT (I think about 10 days later)  Part of the discovery found during the venogram, was that I had REVERSE bloodflow at my neck/ shoulder area.  Nor good.  Now whether of or not THIS was the original cause of the original clot…. is being debated 😉 and… it’s possible that once this bloodflow issue is resolved, I will no longer need the Xarelto….  One thing at a time, but have multiple docs telling me this independently now.

… and my surgery will take place next Tuesday 10/31/17

after I spent a little bit “freaking out”  I was like… this is right up there w/ being “glow in the dark” radioactive (which I’m still bummed I couldn’t pull off ON Halloween.  I’m not up for hunting down the post for thyroid radioactive iodine prank I pulled off…. but it was after Halloween 2005)  THIS TIME… I get to be a skeleton on Halloween…, they are cutting out a rib 😉

The type of surgery is called  “thoracic outlet syndrome”. The surgery involves removing first (top) rib of left side and the scalene muscle on left side. I’ll be in hospital around 5 days but I can’t have visitors right away (will have to keep ya posted on whether that changes near the end of my stay or even if it continues after I come home).

I know I can’t drive for some period of time, since I can’t have shoulder strap near my left shoulder.  

Since I found all this out AFTER blog emailed out yesterday, ya’ll will probably be seeing this next Thursday, when I’m about 48hrs post-op.

I haven’t been on FB since… March-ish? so dunno if I’ll feel up to posting anything there.

As always, thank you for your thoughts and prayers!

[NOTE : I might have to change my joke wording about “being on a diet plan –one organ at a time”  ;-P  

but it still kinda works w/ “rib” & “muscle” added to the list!  especially if my sister Stacy can claim they didn’t put “all the stuffing back” whenever I say “they sawed off my head & glued it back on”  that originally started w/ the thyroid surgery in 2004 but also continues to work for the brain clots in 2013.  HAHA!]

[MORE NOTES/answers :  

1) No, I don’t get to keep the ribs…. yes, I asked 😉

2) yes, I’ll be having some movement PT starting immediately in hospital 

3) I’ll have drains/equipment type stuff attached for a few days, which doesn’t make it conducive to having visitors those first 2-3 days

4) the surgery lasts -5hrs so it’ll be Tuesday evening before there will be any surgery status updates.

5) I’ll be in the hospital 3-7 days (usually 4-5) but ya’ll have met me right? 😉  however, since my neck/shoulder has been bothering me for years & I haven’t had much use since clot…. I’m assuming I can only improve from this point… right?

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!

Since the vein study showed blockages [ http://blog.scottsontherocks.com/blog/2017/09/08/venogram-scheduled-091417/], doctors wanted to do nerve tests.  Apparently, is just code for “stick electrodes on me & shock the crap out of me!”  it did detect diminished results, so next week is test 2 in the muscles. 

IF I understood correctly…

They will inject numbing agents into some of the muscles around my neck/shoulder & perform the same nerve study and see if there are different results and/or less painful and/or better movement.

Let’s hope the numbing agents work cuz “me & anesthesia don’t get along” [ie, takes forever to work]… I’m certainly not looking forward to feeling those shock treatments again.

The next study is next week, I’ll keep ya posted.