1 year anniversary of my sudden paralysis. When my life changed forever. #MeningealCyst #TarlovCyst #SuddenParalysis #SpineSurgery #Neurosurgery
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Hashtag
#TarlovCyst
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Them: *notices my wheelchair* “Get better!” Me: “I won’t! This is my life now.” #SpineInjury #RareDisease #MeningealCyst #TarlovCyst #Disabled #NEISvoid #WheelchairUser
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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
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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
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It’s not right to put the burden on patients to travel to the provider!
Let me know what you think! 6/ #RareDisease #Telehealth #Telemedicine #Audiology #EDS #MCAS #POTS #MengingealCyst #TarlovCyst
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Happy Tarlov (and Meningeal) Cyst Awareness Day!!! 🦓🦓🦓🦄🦄🦄 #TarlovCyst #RareDisease #Spine #SpineSurgery #SuddenParalysis #CaudaEquinaSyndrome
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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
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Made it to Dallas! Hoping to get answers from this new neurosurgeon (well, new to me anyways)… #TarlovCyst #RareDisease #Neurosurgery #Neurosurgeon #Dallas
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*hospital threw away toothbrush*
Me: Can I have something to brush my teeth with?
W: I got you a new head, but I keep forgetting to order you a new body!
Me: That’s my problem! I’ve been using this old body because you forgot to order me a new one! 😜
W: 😐
Me: Too soon?
#TarlovCyst #RareDisease
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Asked my doctor if I could drive. He said “with numbness and tingling in your legs, you’d just be putting everyone at risk.” Told my mom and she said “well, you were putting everyone at risk BEFORE you had numbness in your legs!” 😑
Spouse BELLY laughed. 😂 #ShesNotWrong #TarlovCyst
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I don’t think it’s a question of IF I end up using wheelchair. It’s when. And I think it’s gonna be sooner than later. #TarlovCyst #RareDisease #ChronicPain
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Lord! My hands and legs have been shaking for days! Random tremors are no fun. #TarlovCyst #ChronicPain
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Image of an artist rendering of a Tarlov cyst in a textbook on left. MRI image of actual cyst on sacrum on right.
Been MIA as I went into the hospital on Thursday last week. Got diagnosed with a monster 8.8cm #TarlovCyst So…3 rare diagnoses? Just a couple more and I can defeat Thanos! #RareDisease #ChronicPain
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Learn more about Symptomatic Sacral Tarlov Cysts/Perineural Cysts
#TarlovCyst #PerineuralCyst #TarlovCystDisease #NeuropathicPain #PGAD #PelvicPain #Radiology
www.youtube.com/watch?v=g8FU...
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🚨 The Untold Story of Dr. Isadore Tarlov: Symptomatic Tarlov Cysts 🚨
#TarlovCyst #PerineuralCyst #TarlovCystDisease #Radiology #NeuropathicPain #PGAD #PelvicPain #Neuropathy #NerveDamage
www.youtube.com/watch?v=Ba4a...
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