This is what I say to myself any time I get excited about a doctor, or feel good for a moment or two in a row.

Me: Don’t get too excited e.Lo, you know how you get..Awww, man! but it’s really hard not to! 

Also me: damn, I got fooled again. This (thing x, y, or z) is back to suckville. 

That said and all caution thrown to the wind...I finally have a quarterback in the medical field!! When you and (especially) your parents are navigating this wonderfully 'effd up medical system, and you finally found someone to help guide you who is really caring and invested in your health and quality of life. Let’s just leave it at “it’s about damn time”. 

It's like going from this:

To this:

Things we learned from my neurologist:

• New-ish info that explains why neurologists and neurosugeons have said my scans look so interesting: I have a mixed vascular malformation, CCM (cerebral cavernous malformation) & CT (capillary telangectasia)

• The brainstem (medullary) CCM/CT hemorrhaged and we don’t know when exactly; it could have been even a slow leak for years because it was on my first scans in September 2016 and hasn't reabsorbed since.

• The brainstem hemorrhage caused HOD (hypertrophic olivary degeneration) which likely was the flare of ALL the symptoms in September 2016 that caused me to go to the E.R. and get my brain scanned in the first place.

• CCM is the best known of these three so I'm staying active in CCM land! Posting, working with Angioma Alliance Latinoamerica, and staying in touch with my CCM peeps!

Speaking of CCM peeps, I know my CCM fam is reading this and want to add a sidenote. HOD is rare to develop, but I have chatted with a few Stemmies who have developed it. You can only get it if your CCM/lesion in the brainstem (or resection from tumor, or radiation—can happen to any dx in that area) because HOD causes the olive, or both olives which we all have, to be inflamed and cause all sorts of things.

Prognosis isn’t known but you sure as hell can’t remove it because it’s vital to bodily functions/movement. So, there's that. I am like 110% inoperable now.

Symptom rundown

-right side neck/shoulder pain

-headaches (eye/jaw/brow--trigeminal nerve) or (sharp pain in back left side of head, left temple, sometimes top of head)

-double vision in the morning after I wake up

-light sensitivity 

-sound sensitivity (voices, and abrupt noises startle me, like cutting vegetables, clanking dishes etc.)

-tinnitus (pulsating and high pitched ringing usually right ear, sometimes both when laying)

-slow and slurred speech, sometimes good, sometimes hard to get out words though I'm thinking them; sometimes I struggle for words and have brain fog. If that ever comes into question, let me tell you about the time I microwaved a metal fork.

-hard to concentrate or focus on more than one thing. ie: walking and talking, or talking and typing/doing more than one task at a time 

-sometimes one side of the face is more swollen than the other

-slight right sided facial droop

-high heart rate and difficulty breathing (controlled-ish with Propanolol)

-wheezing from throat (vocal chords?)

-pulsing of right lower lip (most of the time) & soft palate aka palatal myoclonus (always)

-fatigue most of the time; sometimes not so bad but I have low endurance 

-nausea w/o vomiting all the time, many times Zofran isn't enough.

-balance/unsteady/vestibular issues 

-dizzy (like under a wave in the ocean), sometimes it’s a scary drunk dizzy where it lasts for hours 

-drop-foot (right sided, use an AFO) use rollator 99% of the time

-right sided weakness, coordination, and fine motor issues

-sometimes weird nerve pain or shivering in different parts of my body 

-cold to the touch right foot/ankle

Whew! Yeah, it's a lot.

This BFF is really starting to make more sense to me, but as you can see, it comes with a LOT of stuff. I wanted to update you on the bigger things, but my day to day hasn't changed much since last year. 

Keep those good vibes coming! I appreciate you all!

xoxo

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Pps: Need support & upliftment from other fun invisible & chronic illness/disability peeps who get it? join our closed invisible/chronic illness FB group here