Maddy Hatchett

I am finally home after having another emergency surgery in New York 11 days ago! Also, today is rare disease day so I thought I’d share a bit more about my medical journey.

As some of you know, back in September of 2025 I had a craniocervical fusion from my skull to the bottom of my neck to treat the life-threatening instability that had developed there (and to stop my vertebrae from poking into my brainstem). The reason I’ve had to have these unusual operations is because I have a genetic connective tissue disorder which causes my body to make faulty collagen. Instead of my ligaments properly holding my body together all the work falls on my muscles. I was bedridden 8 months leading up to that first surgery as even standing up would cause horrific pain and neurological symptoms.

When I look back on the mosaic of my life it’s been difficult to acknowledge how much pain I’ve struggled through since childhood. After years of being brushed off by doctors I finally received my diagnosis at age 26. But a lifetime of symptoms and struggles has always been there. All you know is your own body so you begin to think it is normal to live with such severe pain all the time.

For example, I remember having to quit my beloved violin in middle school because the pain in my neck was so terrible I couldn’t play anymore. Even looking down to read books, make art, & do homework hurt so much. Want to bike? —> gets bursitis in both hips and a dislocating knee. Want to vacation? —> your digestive system stops working and you get hospitalized out of country. Want to run? —> you ache in every joint for days later despite being gradual and careful with your training. Want to stand up at a party? —> you go home only 45 minutes in because you feel like you’re going to faint and can’t handle the lights and noise. Want to devote over a decade of your life to mastering guitar and building a music career? —> playing becomes so horrifically painful that you cry after performances and can’t even function the next day.

I’ve been robbed of my career, favorite instruments, and physical freedom to even sit up from bed or eat on my own. I am not bitter but I don’t want to paint a false picture of what it is like to live with a severe chronic invisible illness. “But you look healthy” could’ve been the death of me if I didn’t seek out the right doctors.

So back to why I had to have another emergency surgery in NY. We noticed about a month after my craniocervical fusion that my progress in physical therapy and general health was starting to go backwards again. I began to feel this wickedly painful burning and pulling sensation in my lower back and as the months passed it felt like my entire spine was lit on fire and like my brain was being yanked out of my skull. I ended up being diagnosed with Occult Tethered Cord Syndrome which is a fancy way of saying my spinal cord was anchored to my spinal canal and yanking on it (which it is NOT supposed to do, your spinal cord should float freely in your canal). Towards the end, the tension on my spinal cord was so bad that I could barely walk or urinate. My surgeon said it was one of the worst tethers he’s seen and that I also had nerves gnarled up around my spine that he had to fix. I am just so grateful he was able to get me help as quick as he did.

In terms of next steps I can now begin the recovery I was supposed to have after my first surgery. I may be going to inpatient rehabilitation to help recover from the 14 months I’ve been more or less stuck in bed. I am happy to know I have a path forward now even if the pain and struggle continues. Recovery is different for everyone but my doctors are hoping in 18 months to 2 years I might be able to get back to some kind of “normalcy”. The grief that comes with chronic illness is real but on the contrary it does make you appreciate the smallest things in life. Treasure every experience, every moment.

Lastly, for educational purposes I wanted to share a list of all the conditions I have and highly encourage you to look into them! Connective tissue is in every system in the body and that’s why there are so many comorbidities. More people educated on these things means more people we can help in the future! And thank you SO much again to everyone who has supported through this journey 💛 I feel incredibly loved and grateful for each of you

-Connective Tissue Disorder
-Craniocervical Instability
-Spinal Instability
-Occult Tethered Cord Syndrome
-Chiari Malformation
-Internal Jugular Vein Compression
-Mast Cell Activation Disorder
-Dysautonomia
-Postural Orthostatic Tachycardia Syndrome
-Bascule Syndrome
-Gastroparesis
-Klippel Feil Syndrome

Howdy y’all! Writing in with a health update (already shared to my private page). On September 9th, 2025 I underwent a craniocervical fusion from my skull down to the sixth vertebrae in my neck, a posterior fossa decompression, and a resection of the C1 tubercles. This spine/brain surgery was done in an effort to protect my nervous system against the severe instability I’d developed from my Hypermobility Spectrum Disorder and Klippel Feil Syndrome. For over 8 months I was profoundly bedridden and unable to do any tasks on my own. I had hundreds of symptoms a day that made each passing minute quite unbearable. Every bit of independence I had was stripped away and I lost my job, music career, wedding, & basic human function.

I had always known there was something off about my health but after years of seeing various doctors no one could ever pinpoint what was causing my myriad of symptoms. Joint pain, nerve pain, food intolerance, double vision, fatigue, and too many to list. After being brushed off I began to think I was too sensitive or not trying hard enough at Physical Therapy. I distinctly remember one neurosurgeon telling me “when you hear hoofbeats think horses, not zebras” and his young assistant passing a snickering smile at me in his office as I explained that my head was so heavy I could not hold it up. Well it turns out zebras exist.

Unable to find local medical help and feeling rather crazy I began to research my symptoms on the internet. Everything lined up perfectly with a condition called Craniocervical Instability (“CCI” for short). Getting progressively worse each day I realized I had to act quickly. At first we tried local treatments like PT specialized in hypermobility and upper cervical chiropractic care. Seeing I was only getting worse we then decided to fly out of state to try a special out-of-pocket stem cell treatment in Colorado called the PICL. When that yielded no improvements surgery was on the table.

When no local doctors recognized or treated my condition outside of trauma cases I had to go to one of a handful of doctors in the world who treat CCI. So in July I flew to New York and underwent two invasive tests. One involved having two screws drilled into my skull and getting lifted up under traction and the other involved having a bolt drilled into the top of my head where a fiber optic cable went into my brain. I responded extremely positively to traction confirming surgery was the right choice and the bolt ruled out any issues with intercranial pressure. Moreover, medical imaging revealed that my internal jugular veins were compressed by my C1 vertebrae and I’d developed all sorts of collateral veins to keep blood flow going to my brain. Also, my C2 vertebrae was bent back at my brainstem compressing it and my cerebellar tonsils (lower hind brain) were crowding it from the back as well.

In short, after almost 100 medical appointments in 8 months, all of these anatomical issues were addressed at my surgery in September. I’m very fortunate that I don’t remember the worst of the pain (apparently I cussed out my surgical team and then blacked out on pain meds lol). I spent two weeks in the hospital enduring the most brutal parts of recovery and then was able to return home for the rest. Since then I’ve been slowly improving but I am still quite disabled and housebound at this point. My hope is that with time and dedicated physical therapy I will improve and regain independence. I am now able to go on small walks outside and sit upright for longer periods of time which simply wasn’t possible before. Above all else I can’t wait to be well enough to create again whether it be music, art, writing, etc.

At my worst I felt completely stripped of my identity but perhaps I’ve learned I’m more than what I create externally. Yes, even in the darkness we are writing the stories we tell ourselves and how we shape our reality. To be honest, I was writing a pretty dark story, and want to be more hopeful in the future. Hope has always felt dangerous somehow but I find more peace when I stop hoping for the things I can’t control. Hope was never meant to be about control.

Lastly and most importantly, I want to say a resounding thank you to everyone who has supported me through this difficult time. While I’ll never be “cured” of my genetic hypermobility disorder I’ve been able to get the critical help I needed to survive. I am so grateful for every kind word, donation, and bit of love I have received and know that I am extremely lucky to have that. Sending you all my love! - Maddy

p.s. I can’t move my head or neck now so in the future if it looks like I’m constantly side eyeing you that’s why 😂

Merry Christmas 🎄❤️🎄

I’m playing one more show in 2024! Come say hello 6:30pm this Friday. I’ll be playing some Christmas music and originals 🎁🎵✨

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Electric Lady Land ⚡️❤️⚡️

See you at Saturday, 3pm?

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Well now that Thanksgiving is out of the way 🎄I’m playing Christmas music and some originals at on Saturday 12/14 at 3pm. This is my first show in a moment so I’m looking forward to seeing you all there! 🎁✨🎸 thank you & for organizing.

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Everybody meet Blondie, my new guitar! 🌞🦋✨

I’m so excited to cook up some new songs on her. This is my first nylon string guitar that I’ve purchased (lol thanks to everyone who was letting me borrow theirs). I love the textures and sounds she unlocks and will be sharing some more music featuring her soon!

Just a gal and her Home Slices 🍕 💅 ✨

Groovy, baby! 🪩 💃 🛼

So late to posting this but thanks for the great time .rodriguezc 💛

My first unofficial SXSW show of 2024 is tonight 🎸✨ details in my bio.

Can’t make it out? Come say hi on Saturday: Love Tito’s, 1pm, Shiner’s Saloon 4:30pm with ._e

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Just a gal and her axe 🎸

Come say hi this Saturday at 1pm at Love, Tito’s/4:30pm at Shiner’s Saloon. I’ll be performing with the talented ._e

This Thursday I also play a short set at a fun Spirited Away themed event at Blue Norther Tasting Room at 9:40pm

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