Scotts On The Rocks Blog

[pics incl]  Well, left eye failed again.. sigh. this test is fairly consistent w/ previous tests [ http://blog.scottsontherocks.com/blog/2016/09/28/visual-field-test-092816/ ]  He dialated my eyes again (can’t see at moment, will have to add images later)  

the numbing (sp?) drops didn’t kick in and I looked up and said “oh hang on… I… may… have… to… killl… you.”  He about died laughing and thanked me “for the heads up first”, then left for lunch… i had a 7:40am appt ;-P  just kidding!  but good thing i brought Jeff & not ashley (she can’t drive)!

He still thinks the nerve looks ok from the front, wants an MRI of the optic socket
oh, btw… MRI… this Sat, will keep ya posted

referral to optic neurology … to work w/ vascular neurology.  will keep ya posted

Had physical therapy again this morning.  Last week was the eval session one day & follow up one day. [http://blog.scottsontherocks.com/blog/2016/12/20/physical-therapy-122016/ ]  Ashley went w/ me to the second one and there was an attempt made to put my arm above my head, which doesn’t happen.  then i got to pretend “fly like an airplane”… think lying on tummy (on one of those massage tables w/ a face hole) and she had me try and hold my arms level.  can’t do that either.  clearly there is NO muscle memory on the left side.

i tried to practice that at home but i don’t have a cool “face down table” thing, and unless someone tells me if my arms are level, i can’t tell if i’m Superman or not 😉

she started out holding a tender spot on my neck again and i guess i also said something in conversation that changed the plan for today, cuz she promptly beat on me and made me cry 😉 ok not really  I’ve been saying, “no pain, no gain… unless your brain falls out your ears, then it doesn’t matter if you’re in pain, you should stop” ;-P

She decided there are muscles and nerves and blood vessels and we gotta figure out which we can mess w/ and “release” etc.  and i’m actually ok w/ this, I CANNOT hold my arm over my head w/out bursting into tears, can’t even get it close to “up” so i need someone w/ more “knowing than me” to help me figure it out [we won’t dwell on WHY this wasn’t already done]  I told her if she was ok w/ tears, i was ok w/ pain… and Jeff sat there and ignored us 🙂  he actually realized at some point during our discussions that he has a TENS unit for sciatic backpain and she recommended how to use that to help maybe “desensitize” some of my spots

This PT session was pretty intense & yes I cried but I also learned a bit about what is blood flow I cannot block off (what little i have on that side for now) and what are just muscles that don’t know what to do because, as she said”they had a stroke and haven’t been properly trained how to recover”

i better sleep good tonight!

Will went w/ me to my neuro appt this afternoon cuz they rescheduled it from tomorrow, on yesterday afternoon.  I remembered to get printouts this time. [Last appt:  http://blog.scottsontherocks.com/blog/2016/11/29/vascular-neurology-112916/ ]. I’ll have to add those later, head hyrts rite now

I think he was kinda hoping for some definitive reactions from the meds too.  I described at PT blog [ http://blog.scottsontherocks.com/blog/2016/12/20/physical-therapy-122016/]. Since for the most part I *think* my arm has been better, he wants to stay on that med, Verapamil.

After that, he lost me.  there is another med but I can’t remember if it’s name.  The goal being to have a better management of all the symptoms to prevent days like today. [or nights like last night]. So at the moment “adding a med” but he said if it works, I should be able to get off some of the others.  So increase now, decrease later 

I about burst into tears in his office though cuz my head was hurting, so he suggested a “different cocktail.”. He said that I’ve tried aspirin before without adverse affects so he thinks aspirin-benadryl-Phenagran might help knock out these that kinda wake me up & take me down for the count.  This at “cocktail” least sounds like it’ll knock me out ;-). Oxy kinda works but I don’t react like most people so it’s really not best option & I’d prefer it not

I’m all for anything that’s not hardcore drugs.

I think this papwrwok ways reccommeded dry-needling too… so not sure PT gal was thrilled abt that idea & Xarelto but she has done it before so she had said she’d converse w/ primary neuro  earlier today, so maybe after couple visits.

Ordering an MRV of head & optic nerve ASAP.

He also said that he wants to talk to hematologist.  My hematologist will be thrilled about that cuz other neuro NEVER once returned his calls.  This has been discussed before, and I offered again [to do shots in stomach or whatever needed], he thinks I need to go off Xarelto, at least in the short term to run some tests.  One possible test is a spinal lumbar puncture… fun.  But ALL the previous neurologists & hematologists have suggested this test for multiple reasons, most of which I don’t fully understand but clearly they are looking for a specific marker in spinal fluid.

A side effect of the spinal tap could possibly be lowering the pressure on my brain, giving it some relief and possibly a chance for this chronic inflammation to “heal.”. kinda pushing a RESET button.

William asked a bunch of questions too, some prompted by texts from Jeff earlier, but he was on a roll and I’m glad he was here to “do the understanding” for me. One was about flying, can I fly in a plane? possibly but my brain might explode.

Just kidding.  He thinks I probably could once we get the pain & pressure managed.  And he didn’t say “if” he was very confident that”we” can, and… soon.

At one point, I held up my hand and said, “you lost me, I don’t understand, and I’m not going to remember and…”

“…I’ll type it all up for you, and call the meds into the pharmacy,  if you don’t mind waiting just a few minutes.”

I’m sure I ramble but 1) add some new meds, 2) schedule MRI/MRV

Will keep you posted

[NOTE:  OK the med is called: Diamox (acetazolamide)]

Spent some time figuring out WHAT was going on, then she worked on my head, neck and shoulders.  That takes some trust on my part, because I’m pretty skittish about letting anyone anywhere near my head!  I guess today was a good day for this cuz I was about in tears from pain, I have no idea if there is a storm rolling in but I didn’t sleep & my head is really hurting.  

I was hoping the “new drugs” the other neuro put me on would have been clear cut solutions.    I think maybe it might be helping w/ cold arm but today my arm is cold so now now I dunno.  The Imitrix helped couple times but didn’t help couple times… sooo, maybe I just need a massage 😉

Jeff and Will went w/ me because Jeff won’t be able to goto all of these and Will has off school for 2 weeks.  

She held some pressure points which made my arm go through various stages of cold & it was already doing that beforehand but it was kinda “weird” cuz it was tingly already so I couldn’t tell what I could and couldn’t feel on the left side.

I told William to take notes, maybe learn this massagy thang 😉

I definitely have better range of motion in my neck now but I’m not gonna go run out and try bending down 😉 head still hurts.

Schedule this twice week thru Jan and she said she’d discuss the dry needle w/ primary neuro after cpl visits.  maybe get some range motion exercises for my left grip.  right now I can’t do much.  I’ve NEVER past 9 pushup & if head hurts, NO WEIGHT on it! like today

will keep you posted