Archive for February, 2022

My Brain

🧠 🌸💗
My brain.
Most of the beautiful things I have offered the world has come from it. It has led me a life of awe and wonder. It has gifted me the love of learning for my life’s entirety.
For as many medical concerns my body has endured in my 40’s – this past 6 months have been the most detrimental in healing as the very core of my existence. Some would argue its the heart – the brain is still the boss to it all. I have carried it like a newborn baby for the past 6 months – in its fragility – making sure I dotted all the I’s and crossed all the T’s – while also hurdling the MOST pain I have ever been in AND the most fatigue.
As most of you know last October, a brain surgeon locally wanted to do emergent brain surgery on me since I was in excruciating pain and losing my eye sight progressively fast. Lucky for me, a medication we tried on a hope and prayer not only took down the pressure in my brain, it also slowed the process of my optic nerve swelling and my eye sight dwindling. This medication is very hard on the body – it has given me fatigue like I have never in my life have had – but it has also gifted me time.
This time has created space to seek healthcare options with the very best in our country: The Mayo Clinic. To my surprise they took my complex case. Back in December I met with the Neuro surgeon via video and he disagreed with my local Neuro surgeon saying I needed to make sure we turn over every stone possible and find the reasoning why, before we rush into brain surgery. He referred me to get a special MRI that on my side of Florida is not available, and see a headache specialist/neurologist. Meanwhile I followed up with my local person, who decided upon reviewing my case, that – and this is his words: “I don’t need to see you anymore you are fine. All you have to do is lose 90lbs and you will be cured. Count your calories”. Need I remind you SAME person who wanted to do emergency surgery just months prior.
Fast forward to this week when I actually got to go to the Mayo Clinic for the the special 2 hour MRI at 6:30am so that it was ready for my afternoon appointment with the headache specialist. From the moment I walked into Mayo Jacksonville it literally felt like THE best of the best. The quality of care I received even in the radiology department was NEXT to none! My personal favorite was while stuck in a tube for two hours I was able to listen to my favorite Christian music and the head piece they locked my head into- had a mirror that let me see outside of the machine to help with feeling claustrophobic. Then later that day I get to the headache specialist who shows me the very detailed amazing MRI I just had that morning. It showed me a few things – my pituitary gland is empty and deformed, my optic nerve is still angry and swelling of my eyes still present, and the veins behind my brain and around my ears are swollen. Some of this is possible in being restored some are permanent. What was clear was I was misdiagnosed by the original local Neuro surgeon that could’ve done brain surgery for no reason because it wouldn’t have helped 😳‼️I actually don’t have a true Chiari Malformation it just looks like the back of my brain is hanging low because my pseudo tumor is pushing it out. Infact my pseudo tumor is making everything in my brain angry. Although the medication is helping – it’s not a long term – best quality of life – option. So the neurologist who specializes in pseudo tumors wants to find out the WHY and get me off the medication. So what does that mean? I need to no longer use retinol in my skincare, I can’t use doxycycline if I have a Lyme flare, I need to keep my anemia in check, I need to get tested for blood clotting disorders as well as sleep apnea, and the most common thing related to this – is I have to lose weight. Unlike how the other guy just flippantly said “lose 90lbs count your calories you will be cured”, this doctor said with my history of hormonal issues and severe inflammation- the typical way most likely won’t work in my favor. Especially since we are looking for fast acting results for fast relief – and she isn’t looking for 90lbs she is looking for 20% of my weight to be gone. So I will be going for a consultation at the Mayo Clinic at the Bariatric center – to hear about both non surgical and surgical options. If you are reading this and have had weight loss surgery – I would love to hear your own personal pros and cons. I am also obviously looking into non invasive ways if they will work for what I have going on with my body. I am so grateful for the care Mayo Clinic provided me the other day- so seamless between departments and labs- and so understanding. The Neurologist explained to me step by step what was happening in my brain and why I needed to take a few new medicines for now – while I go through the process of losing weight. And praise GOD – no brain surgery for me! 🙌🏻


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