#chiari — Public Fediverse posts

𝐂𝐡𝐢𝐚𝐫𝐢-𝐦𝐚𝐥𝐟𝐨𝐫𝐦𝐚𝐭𝐢𝐞 𝐤𝐚𝐧 𝐨𝐨𝐫𝐳𝐚𝐚𝐤 𝐳𝐢𝐣𝐧 𝐯𝐚𝐧 𝐜𝐬𝐚𝐬
#Chiari malformatie, een aangeboren afwijking in de hersenen, kan #csas veroorzaken. Dat is nog niet algemeen bekend.
Lees het korte artikel en het ervaringsverhaal: https://apneuvereniging.nl/chiari

CHIARI: IL COMUNE REVOCA PATROCINIO (E SPAZIO) ALL’EVENTO DELLA RETE DI DAPHNE https://www.radiondadurto.org/2025/05/16/chiari-il-comune-revoca-patrocinio-e-spazio-allevento-della-rete-di-daphne/ #centroantiviolenza #violenzadigenere #retediDaphne #chiari #News

CHIARI: IL COMUNE REVOCA PATROCINIO (E SPAZIO) ALL’EVENTO DELLA RETE DI DAPHNE https://www.radiondadurto.org/2025/05/16/chiari-il-comune-revoca-patrocinio-e-spazio-allevento-della-rete-di-daphne/ #centroantiviolenza #violenzadigenere #retediDaphne #chiari #News

CHIARI: IL COMUNE REVOCA PATROCINIO (E SPAZIO) ALL’EVENTO DELLA RETE DI DAPHNE https://www.radiondadurto.org/2025/05/16/chiari-il-comune-revoca-patrocinio-e-spazio-allevento-della-rete-di-daphne/ #centroantiviolenza #violenzadigenere #retediDaphne #chiari #News

CHIARI: IL COMUNE REVOCA PATROCINIO (E SPAZIO) ALL’EVENTO DELLA RETE DI DAPHNE https://www.radiondadurto.org/2025/05/16/chiari-il-comune-revoca-patrocinio-e-spazio-allevento-della-rete-di-daphne/ #centroantiviolenza #violenzadigenere #retediDaphne #chiari #News

@spiegelmama
Your mention of tumor caught my attention. Look up Chiari malformation. Read everything about it and ignore the statements that say it only happens with trauma. There is a phenomenon that happens with EDS where brain tissue isn't strong enough to support it's self. You will *never* see this in a regular MRI machine (for EDS) because when you lay down gravity quits doing it's thing. If you get an open MRI where you sit during the scan you may find a herniation and this will block CSF flow and create, among other things, cranial pressure. For me they found a 2.5mm herniation and the cut off is 3mm so I technically don't have Chiari but we know this is the cause of many of my symptoms. Diamox ER twice a day is a godsend to me. As for my official diagnosis it's "pseudo-tumor" but knowing the cause is very helpful. #EhlersDanlos #Chiari

@spiegelmama
Your mention of tumor caught my attention. Look up Chiari malformation. Read everything about it and ignore the statements that say it only happens with trauma. There is a phenomenon that happens with EDS where brain tissue isn't strong enough to support it's self. You will *never* see this in a regular MRI machine (for EDS) because when you lay down gravity quits doing it's thing. If you get an open MRI where you sit during the scan you may find a herniation and this will block CSF flow and create, among other things, cranial pressure. For me they found a 2.5mm herniation and the cut off is 3mm so I technically don't have Chiari but we know this is the cause of many of my symptoms. Diamox ER twice a day is a godsend to me. As for my official diagnosis it's "pseudo-tumor" but knowing the cause is very helpful. #EhlersDanlos #Chiari

@spiegelmama
Your mention of tumor caught my attention. Look up Chiari malformation. Read everything about it and ignore the statements that say it only happens with trauma. There is a phenomenon that happens with EDS where brain tissue isn't strong enough to support it's self. You will *never* see this in a regular MRI machine (for EDS) because when you lay down gravity quits doing it's thing. If you get an open MRI where you sit during the scan you may find a herniation and this will block CSF flow and create, among other things, cranial pressure. For me they found a 2.5mm herniation and the cut off is 3mm so I technically don't have Chiari but we know this is the cause of many of my symptoms. Diamox ER twice a day is a godsend to me. As for my official diagnosis it's "pseudo-tumor" but knowing the cause is very helpful. #EhlersDanlos #Chiari

@spiegelmama
Your mention of tumor caught my attention. Look up Chiari malformation. Read everything about it and ignore the statements that say it only happens with trauma. There is a phenomenon that happens with EDS where brain tissue isn't strong enough to support it's self. You will *never* see this in a regular MRI machine (for EDS) because when you lay down gravity quits doing it's thing. If you get an open MRI where you sit during the scan you may find a herniation and this will block CSF flow and create, among other things, cranial pressure. For me they found a 2.5mm herniation and the cut off is 3mm so I technically don't have Chiari but we know this is the cause of many of my symptoms. Diamox ER twice a day is a godsend to me. As for my official diagnosis it's "pseudo-tumor" but knowing the cause is very helpful. #EhlersDanlos #Chiari

@spiegelmama
Your mention of tumor caught my attention. Look up Chiari malformation. Read everything about it and ignore the statements that say it only happens with trauma. There is a phenomenon that happens with EDS where brain tissue isn't strong enough to support it's self. You will *never* see this in a regular MRI machine (for EDS) because when you lay down gravity quits doing it's thing. If you get an open MRI where you sit during the scan you may find a herniation and this will block CSF flow and create, among other things, cranial pressure. For me they found a 2.5mm herniation and the cut off is 3mm so I technically don't have Chiari but we know this is the cause of many of my symptoms. Diamox ER twice a day is a godsend to me. As for my official diagnosis it's "pseudo-tumor" but knowing the cause is very helpful. #EhlersDanlos #Chiari

BRESCIA: “ARRIVA” SOPPRIME LE CORSE IN FRANCIACORTA. I PENDOLARI CHIEDONO UN CAMBIO DI ROTTA https://www.radiondadurto.org/2024/06/12/brescia-arriva-sopprime-le-corse-in-franciacorta-i-pendolari-chiedono-un-cambio-di-rotta/ #Agenziadellamobilità #SquaredCapital #DarioBalotta #franciacorta #BassoSebino #legambiente #lombardia #trasporti #Paratico #Polaveno #brescia #regione #Sarnico #Locale #LOCALI #arriva #chiari #rovato #News #iseo #bus

BRESCIA: “ARRIVA” SOPPRIME LE CORSE IN FRANCIACORTA. I PENDOLARI CHIEDONO UN CAMBIO DI ROTTA https://www.radiondadurto.org/2024/06/12/brescia-arriva-sopprime-le-corse-in-franciacorta-i-pendolari-chiedono-un-cambio-di-rotta/ #Agenziadellamobilità #SquaredCapital #DarioBalotta #franciacorta #BassoSebino #legambiente #lombardia #trasporti #Paratico #Polaveno #brescia #regione #Sarnico #Locale #LOCALI #arriva #chiari #rovato #News #iseo #bus

BRESCIA: “ARRIVA” SOPPRIME LE CORSE IN FRANCIACORTA. I PENDOLARI CHIEDONO UN CAMBIO DI ROTTA https://www.radiondadurto.org/2024/06/12/brescia-arriva-sopprime-le-corse-in-franciacorta-i-pendolari-chiedono-un-cambio-di-rotta/ #Agenziadellamobilità #SquaredCapital #DarioBalotta #franciacorta #BassoSebino #legambiente #lombardia #trasporti #Paratico #Polaveno #brescia #regione #Sarnico #Locale #LOCALI #arriva #chiari #rovato #News #iseo #bus

BRESCIA: “ARRIVA” SOPPRIME LE CORSE IN FRANCIACORTA. I PENDOLARI CHIEDONO UN CAMBIO DI ROTTA https://www.radiondadurto.org/2024/06/12/brescia-arriva-sopprime-le-corse-in-franciacorta-i-pendolari-chiedono-un-cambio-di-rotta/ #Agenziadellamobilità #SquaredCapital #DarioBalotta #franciacorta #BassoSebino #legambiente #lombardia #trasporti #Paratico #Polaveno #brescia #regione #Sarnico #Locale #LOCALI #arriva #chiari #rovato #News #iseo #bus

BRESCIA: “ARRIVA” SOPPRIME LE CORSE IN FRANCIACORTA. I PENDOLARI CHIEDONO UN CAMBIO DI ROTTA https://www.radiondadurto.org/2024/06/12/brescia-arriva-sopprime-le-corse-in-franciacorta-i-pendolari-chiedono-un-cambio-di-rotta/ #Agenziadellamobilità #SquaredCapital #DarioBalotta #franciacorta #BassoSebino #legambiente #lombardia #trasporti #Paratico #Polaveno #brescia #regione #Sarnico #Locale #LOCALI #arriva #chiari #rovato #News #iseo #bus

BRESCIA: “ARRIVA” SOPPRIME LE CORSE IN FRANCIACORTA. I PENDOLARI CHIEDONO UN CAMBIO DI ROTTA https://www.radiondadurto.org/2024/06/12/brescia-arriva-sopprime-le-corse-in-franciacorta-i-pendolari-chiedono-un-cambio-di-rotta/ #Agenziadellamobilità #SquaredCapital #DarioBalotta #franciacorta #BassoSebino #legambiente #lombardia #trasporti #Paratico #Polaveno #brescia #regione #Sarnico #Locale #LOCALI #arriva #chiari #rovato #News #iseo #bus

BRESCIA: “ARRIVA” SOPPRIME LE CORSE IN FRANCIACORTA. I PENDOLARI CHIEDONO UN CAMBIO DI ROTTA https://www.radiondadurto.org/2024/06/12/brescia-arriva-sopprime-le-corse-in-franciacorta-i-pendolari-chiedono-un-cambio-di-rotta/ #Agenziadellamobilità #SquaredCapital #DarioBalotta #franciacorta #BassoSebino #legambiente #lombardia #trasporti #Paratico #Polaveno #brescia #regione #Sarnico #Locale #LOCALI #arriva #chiari #rovato #News #iseo #bus

BRESCIA: “ARRIVA” SOPPRIME LE CORSE IN FRANCIACORTA. I PENDOLARI CHIEDONO UN CAMBIO DI ROTTA https://www.radiondadurto.org/2024/06/12/brescia-arriva-sopprime-le-corse-in-franciacorta-i-pendolari-chiedono-un-cambio-di-rotta/ #Agenziadellamobilità #SquaredCapital #DarioBalotta #franciacorta #BassoSebino #legambiente #lombardia #trasporti #Paratico #Polaveno #brescia #regione #Sarnico #Locale #LOCALI #arriva #chiari #rovato #News #iseo #bus

I think it's likely I have a tethered spinal cord. And probably a Chiari malformation. How have i survived this long with my brain and tailbone tugging at each other? Explains the pain scale no hostlpital attending can comprehend.
It's a 900/10 right now, btw.
#EDS #HSD #Chiari #ChronicPain

I think it's likely I have a tethered spinal cord. And probably a Chiari malformation. How have i survived this long with my brain and tailbone tugging at each other? Explains the pain scale no hostlpital attending can comprehend.
It's a 900/10 right now, btw.
#EDS #HSD #Chiari #ChronicPain

I think it's likely I have a tethered spinal cord. And probably a Chiari malformation. How have i survived this long with my brain and tailbone tugging at each other? Explains the pain scale no hostlpital attending can comprehend.
It's a 900/10 right now, btw.
#EDS #HSD #Chiari #ChronicPain

I think it's likely I have a tethered spinal cord. And probably a Chiari malformation. How have i survived this long with my brain and tailbone tugging at each other? Explains the pain scale no hostlpital attending can comprehend.
It's a 900/10 right now, btw.
#EDS #HSD #Chiari #ChronicPain

I think it's likely I have a tethered spinal cord. And probably a Chiari malformation. How have i survived this long with my brain and tailbone tugging at each other? Explains the pain scale no hostlpital attending can comprehend.
It's a 900/10 right now, btw.
#EDS #HSD #Chiari #ChronicPain

Intro post!

I am a writer, Intermedia artist, fabric designer, sewist, ink-maker and performance + video artist currently working on a couple of books & an NEA-funded project about a local disaster. Oh -- I also rescue cats and take care of a large feral cat colony.

Longtime #DisabilityTwitter member with #EDS, #Chiari, #Syringomyelia, #MCAS, #Epilepsy + I am #ActuallyAutistic & #nonbinary (pronouns they/she). Very glad to among friends!

Intro post!

I am a writer, Intermedia artist, fabric designer, sewist, ink-maker and performance + video artist currently working on a couple of books & an NEA-funded project about a local disaster. Oh -- I also rescue cats and take care of a large feral cat colony.

Longtime #DisabilityTwitter member with #EDS, #Chiari, #Syringomyelia, #MCAS, #Epilepsy + I am #ActuallyAutistic & #nonbinary (pronouns they/she). Very glad to among friends!

Intro post!

I am a writer, Intermedia artist, fabric designer, sewist, ink-maker and performance + video artist currently working on a couple of books & an NEA-funded project about a local disaster. Oh -- I also rescue cats and take care of a large feral cat colony.

Longtime #DisabilityTwitter member with #EDS, #Chiari, #Syringomyelia, #MCAS, #Epilepsy + I am #ActuallyAutistic & #nonbinary (pronouns they/she). Very glad to among friends!

Intro post!

I am a writer, Intermedia artist, fabric designer, sewist, ink-maker and performance + video artist currently working on a couple of books & an NEA-funded project about a local disaster. Oh -- I also rescue cats and take care of a large feral cat colony.

Longtime #DisabilityTwitter member with #EDS, #Chiari, #Syringomyelia, #MCAS, #Epilepsy + I am #ActuallyAutistic & #nonbinary (pronouns they/she). Very glad to among friends!

Intro post!

I am a writer, Intermedia artist, fabric designer, sewist, ink-maker and performance + video artist currently working on a couple of books & an NEA-funded project about a local disaster. Oh -- I also rescue cats and take care of a large feral cat colony.

Longtime #DisabilityTwitter member with #EDS, #Chiari, #Syringomyelia, #MCAS, #Epilepsy + I am #ActuallyAutistic & #nonbinary (pronouns they/she). Very glad to among friends!

@White_Bite I have #Chiari which basically does the same thing when triggered, so it would be a double hit for me to get #Covid
Thanks for posting this great explainer.

@White_Bite I have #Chiari which basically does the same thing when triggered, so it would be a double hit for me to get #Covid
Thanks for posting this great explainer.

@White_Bite I have #Chiari which basically does the same thing when triggered, so it would be a double hit for me to get #Covid
Thanks for posting this great explainer.

@White_Bite I have #Chiari which basically does the same thing when triggered, so it would be a double hit for me to get #Covid
Thanks for posting this great explainer.

@White_Bite I have #Chiari which basically does the same thing when triggered, so it would be a double hit for me to get #Covid
Thanks for posting this great explainer.