Dura Mater
@toughmothers.bsky.social
We are on the precipice of medical discovery. Twice as many women are incapacitated with cerebrospinal fluid leaks and enduring unneccesary suffering as the specialty clinics scale up. Please send George Clooney. Meanwhile, we must fight together.
Reposted by Dura Mater
🚨 We're excited to announce our seventh speaker, Dr. Ayman Qureshi, consultant neuro radiologist at NHNN. Join to learn about blood patching techniques for spinal CSF leaks. Register 👉🏻 csfleak.uk/event/webina...
#CSFLeakAssociation #CSFleaks
#CSFLeakAssociation #CSFleaks
May 16, 2025 at 12:25 PM
🚨 We're excited to announce our seventh speaker, Dr. Ayman Qureshi, consultant neuro radiologist at NHNN. Join to learn about blood patching techniques for spinal CSF leaks. Register 👉🏻 csfleak.uk/event/webina...
#CSFLeakAssociation #CSFleaks
#CSFLeakAssociation #CSFleaks
Reposted by Dura Mater
Meet the 2025 NORD #RareImpactAward Honorees! 🚨
From trailblazing researchers to unstoppable advocates and game-changing treatments — these leaders are transforming the future of #RareDisease care. 💜
Read the full list and stories about each Honoree: rareimpact.org
From trailblazing researchers to unstoppable advocates and game-changing treatments — these leaders are transforming the future of #RareDisease care. 💜
Read the full list and stories about each Honoree: rareimpact.org
May 28, 2025 at 10:01 PM
Meet the 2025 NORD #RareImpactAward Honorees! 🚨
From trailblazing researchers to unstoppable advocates and game-changing treatments — these leaders are transforming the future of #RareDisease care. 💜
Read the full list and stories about each Honoree: rareimpact.org
From trailblazing researchers to unstoppable advocates and game-changing treatments — these leaders are transforming the future of #RareDisease care. 💜
Read the full list and stories about each Honoree: rareimpact.org
Reposted by Dura Mater
For the next week, we’ll be sharing myths and facts about spinal CSF leak that feature the latest research papers, created in collaboration with @spinalcsfleakca.bsky.social & @csfleak.bsky.social. For day 1, the myths and facts are below!
![References:
[1] Callen AL, et. al. Relationship of Bern Score, Spinal Elastance, and Opening Pressure in Patients With Spontaneous Intracranial Hypotension. Neurology. 2023 May 30;100(22):e2237-e2246.
[2] Callen AL, et. al. Patterns of clinical and imaging presentations in patients with spontaneous intracranial hypotension due to spinal cerebrospinal fluid venous fistula: A single-center retrospective cross-sectional study. Headache. 2024 Sep;64(8):939-949. Epub 2024 Aug 11. Erratum in: Headache. 2025 Jan;65(1):202.
[3] Cheema S, et al. Multidisciplinary consensus guideline for the diagnosis and management of spontaneous intracranial hypotension. J Neurol Neurosurg Psychiatry. 2023 Oct;94(10):835-843.
[4] Mark IT, et. al. CT-Guided Epidural Contrast Injection for the Identification of Dural Defects. AJNR Am J Neuroradiol. 2025 Jan 8;46(1):207-210.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:4gol6rt6bubrfknvxjwhiwqc/bafkreib7xlv3jkuk5lb3dmmnrqax6tknhcdd7xpbovkt6pimwrzf4hfhvq@jpeg)
June 1, 2025 at 5:50 PM
For the next week, we’ll be sharing myths and facts about spinal CSF leak that feature the latest research papers, created in collaboration with @spinalcsfleakca.bsky.social & @csfleak.bsky.social. For day 1, the myths and facts are below!
Reposted by Dura Mater
Tomorrow, #Congress is set to vote on legislation that would strip #Medicaid coverage away from millions of #RareDisease patients. We need your help TODAY!
Tell your Members of Congress to vote NO on cutting Medicaid coverage for people living with #RareDiseases: rarediseases.org/driving-poli...
Tell your Members of Congress to vote NO on cutting Medicaid coverage for people living with #RareDiseases: rarediseases.org/driving-poli...
May 12, 2025 at 5:52 PM
Tomorrow, #Congress is set to vote on legislation that would strip #Medicaid coverage away from millions of #RareDisease patients. We need your help TODAY!
Tell your Members of Congress to vote NO on cutting Medicaid coverage for people living with #RareDiseases: rarediseases.org/driving-poli...
Tell your Members of Congress to vote NO on cutting Medicaid coverage for people living with #RareDiseases: rarediseases.org/driving-poli...
“I’ll pray for you”, always bothered me. Now, even more. A reflexive icky feeling and despair at the spiritual bypass and bystanding. Any greater force wants you to do more than pray. Love is Action. Even if it seems small, it can save a life. If you think “they need help” that is your call.
need.help
May 13, 2025 at 12:19 AM
“I’ll pray for you”, always bothered me. Now, even more. A reflexive icky feeling and despair at the spiritual bypass and bystanding. Any greater force wants you to do more than pray. Love is Action. Even if it seems small, it can save a life. If you think “they need help” that is your call.
Yesterday, @mayoclinic.org found my dural tear, which lead to a CSF leak, brain sag and nearly killed me. 6 YEARS of suffering, 3 knowing why with insufficient medical care. Now, I’m going to heal. If I can survive this, fighting flat..watch me fuck shit all the way up once I’m on my feet.
flat.watch
May 9, 2025 at 10:39 AM
Yesterday, @mayoclinic.org found my dural tear, which lead to a CSF leak, brain sag and nearly killed me. 6 YEARS of suffering, 3 knowing why with insufficient medical care. Now, I’m going to heal. If I can survive this, fighting flat..watch me fuck shit all the way up once I’m on my feet.
Day one @mayoclinic.org…it’s as amazing as everyone said it would be. Like if Chick-Fil-a ran a hospital. Damn, I miss that homophobic chicken…
May 7, 2025 at 2:20 AM
Day one @mayoclinic.org…it’s as amazing as everyone said it would be. Like if Chick-Fil-a ran a hospital. Damn, I miss that homophobic chicken…
Alone, in this hotel room. Don’t know what tomorrow will bring or if they will fix me…i’m scared to hope. How will I do this by myself? brainleak.org mayoclinic.org
BrainLeak.Org
cerebrospinal fluid leak, CSF leak, dura mater, spontaneous, iatrogenic, connective tissue disorders, brain sag, sagging dementia, meninges, lumbar puncture
brainleak.org
May 5, 2025 at 1:58 AM
Alone, in this hotel room. Don’t know what tomorrow will bring or if they will fix me…i’m scared to hope. How will I do this by myself? brainleak.org mayoclinic.org
May 4, 2025 at 4:23 AM
@amtrak.com I truly believe this is the best way to travel with a brain leak…with preparation, planning and communication, Amtrak can do so much good for people who need zero gravity body positions to travel for medical treatment.
May 3, 2025 at 1:04 PM
@amtrak.com I truly believe this is the best way to travel with a brain leak…with preparation, planning and communication, Amtrak can do so much good for people who need zero gravity body positions to travel for medical treatment.
The longer a brain sags from a fluid leak, the more damage occurs. A slow motion brain injury, a persistent concussion and sustained fight or flight is a level of hell one cannot fathom. Beyond pain, trauma, trapped, vulnerable. It is torture not just physically, but an enveloping nightmare.
April 30, 2025 at 2:47 PM
The longer a brain sags from a fluid leak, the more damage occurs. A slow motion brain injury, a persistent concussion and sustained fight or flight is a level of hell one cannot fathom. Beyond pain, trauma, trapped, vulnerable. It is torture not just physically, but an enveloping nightmare.
Before, I was so busy and consumed with the chaos of life. I never sat down to rest. Only crashing from exhaustion after 16 hours of doing it all. I’d leap up from bed and didn’t let any part of me rest until I slept. Now I can’t stand up. 3-5 minutes to get from one spot to another.
April 30, 2025 at 2:44 PM
Before, I was so busy and consumed with the chaos of life. I never sat down to rest. Only crashing from exhaustion after 16 hours of doing it all. I’d leap up from bed and didn’t let any part of me rest until I slept. Now I can’t stand up. 3-5 minutes to get from one spot to another.
If you can please share, I need some help get to mayo. Have to leave in two days…https://gofund.me/dddef6db
Donate to Brain Leak Treatment at Mayo Clinic, organized by Brooke Miller
I finally got a date and am needing to cover the costs of travel and living now tha… Brooke Miller needs your support for Brain Leak Treatment at Mayo Clinic
gofund.me
April 30, 2025 at 1:14 AM
If you can please share, I need some help get to mayo. Have to leave in two days…https://gofund.me/dddef6db
Mayo Clinic…Here I Come.
a close up of a woman 's face with the words `` is your brain leaking '' written on it .
ALT: a close up of a woman 's face with the words `` is your brain leaking '' written on it .
media.tenor.com
April 27, 2025 at 1:42 PM
Mayo Clinic…Here I Come.