out of the silence: part one

6.Oct.2019 marked four years since my “MS” diagnosis.

Today, 3.Dec.2019, marks one year from the initial venoplasty that changed the course of my life.

What a ride.

I've been reflecting a lot lately.

6.Jan.2019 (my last blog post) I wrote about BIG changes I experienced after a procedure 3.Dec.2018. 

I’m sad to admit it’s almost been A YEAR since the last post (and you might NOT be able to read them here anymore because my previous posts have disappeared or at least they do when i attempt to search on my desktop...).

I can hear my social media manager saying "That’s not the way to keep anyone’s attention and get followers to your blog!!!" Wait, I don't have a social media manager!

But, to make an excuse, I’ve been to HELL, literal HELL on Earth. To use St John of the Cross' term: The Dark Night of the Soul.

Medically speaking, it wasn’t hospitalizations or near death experiences, but for me worse. Why? Because on the outside, I almost appear (Part 2 will define “almost”) the same as I did one year ago, but on the inside, I went through the fire and I’m a different person.

It all really hit me in August when I attended a continuing medical education conference with many of the people I used to work with, some who I hadn’t seen in exactly one year.

It was like I stepped back into a world where time had stopped. I felt like I was watching myself from the outside.

I’ve been through so much in a year, yet for almost everyone who I ran into, it was like no time had passed.

The barrage of questions coming at me. “Hey! How are you? What have you been up to? How are things? What’s new?” 

I choked back tears every time.

“It’s been an interesting year and it’s really long story” was all I could manage to get out before tears started welling in my eyes. 

I lived in that world. Daily worrying about surgeons, patients, hospital metrics. How did I get so far away from it all? I live a different life now. My day is filled up with things I didn't train for. AT ALL. 

I've been broken on many levels.

With that dramatic intro, I’m going to back up a few steps.

I never completed the task I said I would from my last post. 

I was going to detail my procedure in OH as well as give some supporting evidence behind it. To be honest, I became paralyzed (NOT LITERALLY) by organizing the massive amount of literature I reviewed and use it effectively in a post. 

How would I tell my story?

Paralysis analysis: the state of over-analyzing (or over-thinking) a situation so that a decision or action is never taken, in effect paralyzing the outcome -Wikipedia

PROCEDURE (feel free to skip down if you already know this part or don’t have an interest)

Nearly identical to an angioplasty to improve blood flow within a “blocked” artery, a thin wire is inserted into the venous system via the femoral vein (in the groin). The wire is sent up into the azygos vein in the chest as well as the internal jugular veins where, if identified (by venogram: using contrast dye and live Xray to watch blood flow), a narrowing is widened using a balloon made of kevlar material. The expansion of the vessel leads to improvement of the blood flow.

When the balloon was expanded in my azygos vein, I didn’t notice anything immediate. 

However, when the balloon was expanded in my internal jugular veins.

BAM!

Switch on, everything turned into HIGH DEF.

IMMEDIATE CHANGES:

Tinnitus: Gone

Blurry vision in left eye: gone

Left ear fullness: gone

Left TMJ pain and popping: gone

Fatigued feeling in left arm: gone

Cold feeling/tingling finger tips: gone

Neck pain: gone

Headache behind ears: gone

Itchiness back of head and neck: gone

3-6 HOUR CHANGES:

Improved dexterity in fingers

Improved balance/coordination

Vertigo: Gone

Improved energy

Improved mood

12+ HOURS CHANGES:

Cold feet: gone

Fatigue/heaviness in legs: gone

Improved word finding and cognition

Within one week i was able to jump, skip, jog, carry my one year old on my shoulders while walking on uneven terrain! 

What?!??!

My life had made a 180 degree turn. I felt like I had a new life. How was I in such bad shape and not realize it? Slow and small changes I guess. I felt AMAZING and was making some BIG plans…

In a year I still haven't organized all the literature I reviewed so I apologize that I'm not going to use it here.

If anyone is truly interested, there is a great blog http://ccsviinms.blogspot.com/ written by Joan Beal, the wife of the first MS venoplasty patient in the US. She has TONS of great stuff, ie. link to papers galore! Here's a LINK to a news report about the "controversial therapy" 10 years later.

Back to my post-venoplasty story:

Unfortunately about six weeks after my procedure, symptoms started to return (headache, neck pain, itchiness in the back of my head, jaw pain and popping, coordination issues, etc.)

Ultrasounds, MRIs and more doctors visits over about three-five months showed blockage in both jugular veins; blood clots was the most likely reason; blood clots from the procedure. 

Blood thinners, more imaging and doctors visits became my past time. 

Unknown territory for the girl who took Tylenol a few times. 

I was told: “The clots will either dissolve or turn to scar tissue”. Bummer.

March and April brought on a new set of challenges and the symptoms returning cast a significant shadow onto the plans I had.

We had taken Vera out of preschool at Christmas break 2018. With both girls by my side. All. Day. Long. the days became pretty long. On top of it all, I was feeling terrible with no relief in sight. I was struggling to get through the day. Taking care of the girls used most of my energy. I'm very blessed and thankful for my family and friends who have supported me/us in so many ways this past year.

My doctor from OH didn’t want to do anything further. Sad face. 

He referred me to a vascular surgeon in Scottsdale at The Mayo Clinic.

That vascular surgeon didn’t want to do anything except prescribe a blood thinner.

Of note, he published a paper in 2012 (click "paper" to read) describing a a bypass graft of the internal jugular vein for a patient with MS suffering from chronic cerebral spinal venous insufficiency. 

Wait it out he said. No attempt to remove the clots. Nothing. Just wait.

You’ve got to be kidding me. 

So, wait it out was my plan. 

HELL ON EARTH.

Part two up next.