May’s Story

Site created on October 15, 2018

Welcome to my CaringBridge website for part two of my brain surgery adventure. After much feedback after surgery number one, I am using this site to keep family and friends updated in one place.

To get caught up on part one of this adventure please read my journal updates titled:
• Meet Rathke
• Surgery & Recovery
• Rathke's Return
• Rathke's Second Eviction Notice

I appreciate very much your support, well wishes, and good vibes. Please be patient as I navigate my wellness; some weeks I may update often, other weeks may be a bit more quiet.

Thank you for visiting and I can’t wait to be back to Maybearing it up at 100%!

Newest Update

Journal entry by May Ruiz

More invasive but not too invasive.
 
After three months of observation Rathke was now larger by 2MMs, sitting pretty at 17MM - he was slowly creeping back to his original size and that proves troubling to my neuro team. Continued growth means continued loss of vision, increased pressure on my frontal lobe and further affects on my pituitary gland/hormones. Extended pressure on my optical nerves can equal permanent vision loss and in my neurosurgeon's eye it's better to preserve vision than try to regain it. My blood labs have also shown a consistent insufficiency in growth hormones (I know, laugh now...we didn't need blood labs to tell us that, right?) which could be the reasoning behind my constant fatigue and very confused menstrual cycle. Oh yeah, and the raging migraines and nausea have become more frequent and consistent.

Everything is pointing to surgery number two. 

April 23rd, 2019 

I'll go in for surgery number two on April 23rd, 2019. We'll try the same surgery type but we'll be more aggressive this time around. Instead of accessing through one nostril we'll go through both and we'll leave a larger perforation in the cyst to encourage it to drain instead of fill up. I'll lose my sense of taste and smell for a minimum of 3 months to a realistic maximum of forever. I'll basically do it all over again with the volume turned up just a bit higher. Risks of permanent blindness and stroke are still there and chances of diabetes insipidus are also possible but that can be reversible so that's promising. 

This time around I'm hopeful for a better recovery period; I'll know what to expect and feel more prepared than I was less than a year ago. I'm taking some lessons learned from round one and applying it to round two to make the recovery period easier for everyone. I'm grateful for my work from home job that will allow me to get back to work sooner than before and I'm grateful for my incredible care team that continues to support me in ways I didn't know doctors could. 

With this hopeful spirit I'm choosing to be more open with this second surgery. I'm choosing to share my previous and current progress with my family and friends and hope to also share some insight to those who have been diagnosed with a Rathke's Cleft Cyst and are looking for real answers that are easy to understand. I'm choosing to share my progress now because in June 2018 I chose to fly under the radar and I've learned that was more jarring to those around me than I expected. 

Round one had me nervous and unsure of what my outcome may be; I was scared of opening my eyes after surgery to only see darkness for the rest of my life. I was scared to wake up with neurological damage due to a stroke and was generally scared of waking up as someone I didn't recognize or someone who would lose her independence. I used a lot of my strength in surgery one and I'm doing my best to muster up that same courage for surgery two. 

The goal, as it was before, is that the cyst won't refill. The more aggressive approach will hopefully encourage the cyst to drain on its own and follow up MRIs will simply show surgery site scar tissue and that's it. While that is the goal I have to remain realistic; there is a chance that the cyst cells will re-heal itself and I'll require a third surgery. This will both prove that I am, in fact, a Marvel Comics X-Men member (regeneration powers! awesome!), and that I'll require open skull surgery. That is a bridge I'll cross when I get there - here's hoping my life's Google Maps doesn't take me in that direction. 


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