How I feel about my most recent trip to Mayo Clinic and other life updates
A photo from 2017 with the president of the Angioma Alliance on my left, Dr. Connie Swartka-Lee, and my neurologist at Mayo Clinic, Dr. Kelly Flemming.
Well by now we’ve established care in the form of a top notch expert in Cavernous Angioma (CCM) and director of the CCM Center of Excellence at Mayo Clinic. That would be my neurologist, she’s great. She listens intently, reviews my scans with me, and often has to remind me “if you have brainstem surgery, you will die”, not in a pessimistic way—but very realistic and necessary for me to hear.
You see, contrary to how I may write or think (do I have my head wrapped around my medical conditions yet? Nope.), I have a nagging thought that it’s not real/I’m making it up. I’ve worked really hard to understand my situation inside and out, and I know in my heart that this is as real as it comes with no chance of brain surgery, which is the only treatment. Yet every time I go to Mayo and/or have an MRI, I get a feeling that they need to do surgery and though it will be extremely risky, there might be a chance my symptoms would improve. So every time I am in her office I ask, “am I still inoperable?” And her answer is the same.
So that was one thing we got to hear from super specialist #1, “if you have brainstem surgery, you will die.” Heh. So surgery is very much off the table folks.
We of course chatted about Taz, a long conversation actually. We even had typed up a list of symptoms with and without Taz (one list was over 20 items; I’m doing great over here thanks). My neurologist is very familiar with Taz since the episodes have been in the picture a year and a half. The difference is in the frequency now. Ultimately, since surgery isn’t possible (and deep brain stimulation—which she discussed with another expert deciding that it wouldn’t work for me) the only recourse is meds.
That’s what I’m doing now, or will be soon. Experimenting with the recommended meditation with the end goal being to prevent Taz episodes all together, instead of chasing it like we do now. This means decreasing the med that I “shouldn’t be on long term” but works 70% of the time and has little to no side effects, and increase medications I (my body) am not used to or potentially ready for the side effects. We’ll see.*
*For anyone who has done experimenting like this for migraines or chronic pain, you know how much this will potentially suck.
She told us these Taz episodes, which are mini stroke-like episodes, are likely caused by the HOD in my brainstem and not the Cavernous Angioma (CCM). In September 2016 my brainstem CCM bled and it caused another rare brain disease/situation called Hypertrophic Olivary Degeneration (HOD).
Regardless of what caused what, I’m struggling.
I don’t have energy to go into detail but if you’ve been following along on social media (Instagram) you’ll understand. My neurologist recognizes that, and actually can’t do anything.
So when I say I’m still processing, that’s one thing on my mind. Another of course is how physically rotten I felt while there. There were points of pain I haven’t reached in AWHILE which, on top of everything was—let’s just say—a lot. There are other things too but I need to talk to my therapist about them. Ehem: 7T MRI I’m talking to YOU. I digress...
My appointment with the neuro ophthalmologist went about as expected (but did I mention our expectations were hella low?). He was a second opinion and confirmed and agreed with almost everything that my first doc said: right ocular torsional nystagmus, slight left ocular nystagmus, and oculo-palatal myoclonus caused by HOD.
What this means: my right eye moves in a jerky circular motion, which causes dizziness, nausea, and is sometimes painful (that is why I need to wear a patch), and the left eye has started moving side to side. Obviously this is concerning considering I cannot patch both eyes. But thankfully the right eye is not as bad, so the doctor said to keep monitoring it. Oculo-palatal myoclonus means that my entire throat (palate, and vocal chords) is moving along with my eyes. So there’s that. Like I always say, it’s a shitshow 2.0.
He also said he is against eye surgery to “slow” the nystagmus because it’s not a “fix”. Since no one can “fix” my brain, the eyes can never really be “fixed” until that problem resolves. I should mention that there is absolutely zero prognosis for HOD symptoms. (There are hardly any studies even on HOD!) Some patients keep degrading for a few years then stabilize, some improve, some do not. No one is able to tell me which one I am, but so far I’m the degrading one with HIGH hopes for stabilization soon. Hope is what I’m working with over here in droves; hope and support from my community of friends and family.
I definitely feel like I’ve gotten the go ahead (based on what I’m being told or put more simply, “we can’t fix it”) to move onward. Figure out my meds, sure. Have ten zillion symptoms, sure. But also figure out how to live my life ALONGSIDE them.
Starting now, I’m choosing to continue moving forward with my unique type of life. The kind that requires you to stay in your condo for days or weeks at a time, the kind that makes seeing friends hard to impossible, the kind that requires tools in the tool belt to (mostly) chill out your Invisible BFF of symptoms that are always with you.
That’s my life right now, and IT’S OK. What I can control in this shitshow 2.0 is how I react and how I move through Taz, and the plethora of other symptoms I have.
For today, hope and gratitude fuel my attitude and that’s 100% enough.
A recent photo of Erin enjoying being outside on her condo building’s pool deck in downtown Minneapolis.
