These temperature swings are awful on my joints. Cuddling up with an ice pack AND a heating pad! 😓 #NEISvoid #DisabledLife #SpineInjury #MeningealCyst #Sciatica #JointPain #RheumatoidArthritis

1 year anniversary of my sudden paralysis. When my life changed forever. #MeningealCyst #TarlovCyst #SuddenParalysis #SpineSurgery #Neurosurgery

Almost a year out and I’m trying to pick up the pieces of my life from before I was paralyzed. Only to realize there’s not as much life to time back too. Things and people, moved on without me. #NEISvoid #Disability #MeningealCyst #SuddenParalysis

I’m not a failed horse. I’m a ✨unicorn✨. #RareDisease #DisabledLife #DisabilityAwareness #Spoonie #EDS #MeningealCyst #SpineInjury #POTS #MCAS #RheumatoidArthritis #Neurodivergent

Them: *notices my wheelchair* “Get better!” Me: “I won’t! This is my life now.” #SpineInjury #RareDisease #MeningealCyst #TarlovCyst #Disabled #NEISvoid #WheelchairUser

People really think you only need a wheelchair if you’re 100% paralyzed. Partial paralysis and dynamic disability are things! 🤨🥲 #Disabled #WheelchairUser #MeningealCyst #TarlovCyst #SpineInjury #RareDisease

Hey medical community - Tarlov and Meningeal cysts are not incidental findings. They cause PAIN. Figure out a way to validate the lived experiences of your patients. Like how some women find IUDs excruciating. #ChronicPain #RareDisease #TarlovCyst #MeningealCyst

I graduated from physical therapy today! 🥹😭🙏 #MeningealCyst #ChronicPain #ChronicIllness #hEDS

Trying to deconstruct the internal ableism that tells me I’m a burden to my family. Trying to learn a new way to live now with my limitations. Grieving what my life once was. Celebrating it’s not worse. Fearing it will be. I’m…tired. #Spoonie #hEDS #MeningealCyst #SuddenParalysis #PartialParalysis

I have value, even in my stillness.

Remember to breathe deep today. 🧘‍♀️

#DisabledLife #DisabilityRepresentation #WheelchairUser #HearingAidUser #hEDS #POTS #MCAS #MondiniMalformation #HoH #MeningealCyst #Spoonie #RepresentationMatters #ThisIsWhatADoctorLooksLike #BusinessOwner #FemaleLead

If I wasn’t a doctor who owned my own practice, I’d probably be out of a job right now with how much time I’ve had to take off of work. 😥 My body has needed this time to heal. I realize how privileged I’ve been to be able to take it. #ChronicIllness #POTS #MCAS #hEDS #MeningealCyst

Physical therapy is currently giving me life. It’s my reason for getting out of bed and taking my meds in the morning. #hEDS #MeningealCyst #SpineInjury #Neurosurgery

Them: How are you?
Me: Better than I was, not as good as I’ve been!
#ChronicIllness #MeningealCyst #DisabledLife #ChronicPain

Meningeal cysts are a super rare condition, and most people don’t know about it or what it is. I felt it was really irresponsible for the provider (who is not a neurosurgeon or an expert in spine health) to suggest that the Covid vaccine caused my cyst. #MeningealCyst #BirthDefect #Disability

Followed up with gastro for bloating, constipation and neurogenic bowel. They prescribed me new meds which have been great except now I have bloating, neurogenic bowel, and diarrhea. 🙃 #ChronicIllness #SuddenParalysis #ChronicPain #MeningealCyst

MRI black and white photo of an 8.8cm meningeal cyst

The massive, 8.8cm meningeal cyst that caused my sudden paralysis on March 13th, 2025. Grateful for Dr. Frank Feigenbaum who removed it on March 28th, and gave me a chance at recovery. #MeningealCyst #SuddenParalysis #ChronicPain #SemiParesis #RareDisease #Disability

Every day is still a gift. #ChronicPain #ChronicIllness #Disability #WheelchairLife #MobilityIssues #MeningealCyst

Took a shower and now I’m going to need three business days to recover. #ChronicIllness #Fatigue #MeningealCyst #ChronicPain #DisabilitySky #Disability

“You need to get out of the house more”. Yeah, I’d love to. But I can’t bathe without help and I’m not allowed to drive for 6mo. Sooo…🤷🏻‍♀️ #ChronicPain #MeningealCyst #ChronicIllness #Disabled #DisabilityLife

Digital blood pressure machine that reads 81/66 with a pulse of 96/min

Blood pressure too low today. No energy and feeling faint. #ChronicIllness #ChronicPain #MeningealCyst #Neurosurgery

If you’re not sweating when trying to put on your compression stockings, then they’re not tight enough…🤣 #Disability #DisabledDoctor #ChronicIllness #ChronicPain #MeningealCyst

My PCP told me that the only difference between the surgery I had, and me being hit by a bus, was that the surgery was on purpose. #MeningealCyst #SpineSurgery #MobilityAidUser #ChronicPain #DisabledDoctor

Got my surgical stitches removed today. Now it feels like ands are crawling up and biting my spine. Yay! 🥲🙃 #Spine #Neurosurgery #MeningealCyst #Recovery

Love for people to ask when I’ll be “better” and I get to tell them “never”. #ChronicIllness #ChronicDisease #NEISvoid #MeningealCyst

The first group of neurologists I saw said my cyst was “inoperable” and suggested losing weight sometimes takes pressure off of the nerves the cyst was pushing on which could improve my symptoms. 😒 #MeningealCyst #ChronicIllnessCommunity #ChronicPain #SuddenParalysis

TX roads are not friendly to those who have just had spine surgery. 😓 I did not fully appreciate how miserable a ride in the car could be. #ChronicPain #SpineSurgery #MeningealCyst #RoadWorks #NEISvoid

Asked the hospitalist to test me to Pendred Syndrome, Lupus, and EDS. She asked “What’s the point? What will knowing do for you?” Because it’s my body and I want to know! It will help me explain things. And know my limits better. #ChronicPain #RareDisease #MeningealCyst

UnitedHealthcare isn’t wanting to pay for me to get a wheelchair after SPINE SURGERY because I could walk 150 feet while assisted by a PT, and a safety strap. 🙄 #MeningealCyst #RareDisease #ChronicPain #WheelchairUser #MobilityAids #UHC

First time walking after neurosurgery on my spine to remove the #MeningealCyst. It hurt but was necessary #MobilityAids #Walker #WheelchairUser #Disability

8.8cm meningeal cyst sitting on female patient S1-S4 nerves.

Top view of meningeal cyst sitting on S1-S4 nerves.

For any doctors out there, this is what a meningeal cyst looks like on MRI. It is NOT a Tarlov cyst, and it CAN be removed. If you don’t know something, refer to a colleague who does. Don’t just send patients home to die. #CaudaEquinaSyndrome #MeningealCyst #TarlovCyst #RareDisease