Hello everyone! My name is Ky Dio: photographer, jewler fabricator and sculptor from Arizona. Many of you know (and hello and welcome for those that don’t) for most of my life I’ve suffered from debilitating migraines that I have had since I was 5 years old. For the last four years though, I’ve been having these “new migraines” which I have been hospitalized for a few different times, and are not responsive to medication.

The new migraines come out of nowhere, are 0-60 debilitating and the attacks happen often and without warning. Nothing seems to help them and with that a whole slew of strange neurological symptoms have been occurring: vision loss, muscle spasms, seizure like activity, rice crispy sounds and sensations in my head, dizziness, and vertigo to name a few.

It’s been really scary and frustrating not knowing what’s causing them or how to fix it. It has completely prevented me from living a normal life. I feel like I have no control over my body and it’s awful.

In April of last year I began seeing a Neurologist at Banner who prescribed me a preventative injection among many other things. These “new migraines” have also not been affected by the Emgality subcutaneous injection that I started in August of 2024. That medication was a game changer for me and has pretty much eliminated the regular migraines I was experiencing almost 22 days out of the month previously. It alleviated a lot of my pain and after the first dose I was amazed at how good I felt-I woke up the next day in disbelief that I had NO PAIN. This is what normal people feel like all the time??? Wild. Still the “new migraines” were occurring without relief and any reason for their cause was unknown. I felt like I was drowning.

Since then I have had MRI, MRA, nerve tests among other things to see what’s going on in my brain. For 9 months we didn’t have any answers. While the regular migraines had pretty much ceased to exist thanks to the Emgality-the “new migraines” were happening more and more frequently and the neurological symptoms were increasing as well.

A few weeks ago my neurologist abruptly left Banner, and with the encouragement of my mentor, Suzanne, I sought a second opinion from a Neurosurgeon and specialist. I just couldn’t believe that there wasn’t a reason for my symptoms-I refused to take “it’s in your head” or “it’s stress” for an answer. I am glad she pushed me to take the next step for a second opinion because it is how we got to where we are now in this process... which is finally identifying the cause of my suffering which thankfully is a fixable problem.

For four years I’ve been screaming into the void asking for help with this so it has been a long journey to say the least. With ACCHS, no one wants to provide quality care-now that I’m on Aetna and working with a knowledgeable specialist (thanks to my partner and mentor)-things are moving very quickly.

Within 5 minutes of looking at my imaging, my Neurosurgeon found what he thinks is a blocked artery in my brain. He also found more arachnoid granulations (which are a precursor to tumors) than what was originally reported on the MRI finding. At least three different doctors from Banner missed the blocked artery and he says this is most likely what is causing the neurological symptoms and attacks I am experiencing.

I endured so much medical gaslighting and trauma during the process of receiving this diagnosis- I started to question my sanity and was really close to giving up in more ways than one. It takes women an average of 7 years to get a diagnosis and 4 was absolutely grueling for me. Finally, we made it here. I am relieved, angry, terrified, and hopeful at the same time.

On February 26 I will have an angiogram diagnostic procedure where they go through your veins into your brain to see if I need to have another procedure and brain surgery to place a stent to fix the blockage in the artery. So far I’m looking at two different procedures that require hospitalization and surgery to get to the bottom of this issue in my brain. After the results from the angiogram we will be able to schedule the stent placement and brain surgery.

I am relieved because my neurosurgeon Dr. Chowdhary says it’s fixable. I am thankful for the good insurance that my partner worked to get for me. Thankful for her for a million things and supporting me through this nightmare. Without her, none of this would even be possible. I am so so thankful for her and her love. She is literally my angel. I am so incredibly lucky to have her in my life and by my side.

On the other hand I’m terrified because although a stent is no big deal to my Neurosurgeon-it’s still brain surgery. Not exactly the news I was expecting on my 33rd birthday. I will attach images of the MRI and the estimate I received from the hospital for just the diagnostic test-not even the actual surgery is extremely expensive.

This is why I am asking for help financially for these things-even though we have good insurance now the procedure and surgery is going to be expensive and honestly I have no idea how we are going to pay for it. This is not an elective procedure and surgery-it’s necessary and the answer to giving me my life back and putting all of this pain and suffering and uncertainty behind me.

This the start of the rest of the journey and feels like a whole new book in the series of my life story. Whether you have been here since the beginning or are just now coming along for the ride-thank you for being here and supporting me. It means so much to me.

My wish is that with your help, the community support, and donations from the gofundme we can crowdfund our share of the expenses not covered by insurance so that hopefully after years of suffering I can finally have a better life -without these life threatening neurological issues standing in my way.

I know it’s a lot to ask-I don’t even know if we can make it happen but we have to try. I can’t honestly keep living like this because in reality it’s not a good life right now. But again-these surgeries and procedures are not a choice-they are necessary for fixing my brain and giving me the quality of life everyone deserves.

In the image of the MRI printout you can see the black thing between my fingers is the block in the artery. The white matter around are the granulations. Previous MRI images show the arachnoid granulations pretty much covering the entire right side of my brain top to bottom. Fixing the blockage in the artery will hopefully be the answer for my life returning to normal. My follow up is March 10 for what happens next after the angiogram regarding the stent and brain surgery with my wonderful neurosurgeon Dr. Chadhowry. I know I am in good hands now with my medical team at Honor Health. Fingers crossed.

I know it’s hard right now for everyone so I appreciate you sharing if you are unable to donate. Every little bit counts. I have a lot of love and skills and art to give in exchange to sweeten the deal. I’ll be doing some high ticket gifts on social media for some of my most recent jewelry collections- I have been creating a lot of magic for you all and I can’t wait to share it.

I’ll be updating my Etsy store with affordable prints of my art and some other jewlery pieces that are affordable as well if you want to take that avenue instead of contributing to the gofundme. I have the most recent Kaibab Boneyard sculpture series available for purchase as well. I can offer in person one on one classes for jewelry, painting and other creative things. Buying art or commissioning customs or booking photoshoots with me is support too and I love doing that work!

I love you all so much. This whole situation is absolutely terrifying and not where I expected to be at this stage in my life. Thankfully this diagnosis is not a death sentence-it’s fixable. I just need your support and help to get there.

I know I have so much to be grateful for in the support and fans and collectors of my work behind me and I’m so thankful for that. If you can’t donate please share. Anything helps right now and I’m so thankful for the support system I have and the people around me who are doing everything they can to keep morale high. I keep making the joke that I just need a tune up at the Neuro Lube and I’ll be unstoppable.

I’ll keep this updated as we move along the process. It’s been a tumultuous journey and I think we can finally see the light at the end of the tunnel. Please help us reach it and get to the other side. Thank you.

Gratitude,

Ky Dio