#Csfleak

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#Csfleak Reel by @chronically_karissa (verified account) - Diagnostic Delay Stats for SIH / Spinal CSF Leak: Average time to diagnosis: 12-24 months (Multiple studies and patient surveys report delays of 1-2 y
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@chronically_karissa
Diagnostic Delay Stats for SIH / Spinal CSF Leak: Average time to diagnosis: 12–24 months (Multiple studies and patient surveys report delays of 1–2 years on average.) Misdiagnosis is extremely common: Many patients are initially told they have migraines, anxiety, depression, chronic fatigue, or even fibromyalgia before a CSF leak is considered. A study published in Cephalalgia (2016) found over 50% of SIH patients were misdiagnosed before the correct diagnosis was made. Multiple rounds of imaging are often needed: Even high-quality MRIs or CT myelograms frequently fail to detect the leak site, which delays treatment further. • One study reported that in up to 60–80% of SIH cases, the leak location remains unidentified on imaging. Under-recognition by physicians is a major barrier. • Many neurologists and ER doctors are not trained to recognize hallmark symptoms like orthostatic headache or brain sag on MRI. #csfleakawareness #spinalleak #medicalgaslighting #invisibleillness #undiagnosedillness #spoonie #chronicpainwarrior #chronicpain #misdiagnosed #chronicillnessawareness #neurologicalsymptoms #healingjourney #chronicallykarissa #csfleak #leakweek2025 #csfleak #leakweek @spinalcsfleakusa @csfleakassociation
#Csfleak Reel by @ze.brave - She's baaAAAaack💕🦓 -got a procedure (cisternogram) to test for a CSF leak *it was the worst pain I have ever felt* -learned my spine has extremely
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@ze.brave
She’s baaAAAaack💕🦓 -got a procedure (cisternogram) to test for a CSF leak *it was the worst pain I have ever felt* -learned my spine has extremely sensitive nerves -got a spinal leak from that procedure -Trip #1 to the ER to get a blood patch (hello second lumbar puncture in 2 days) -think I’m better enough to go to work. FALSE. -manage to get home, got very sick, called 911 -ambulance ride for ER trip #2 -blood patch dislodged, but not allowed to get a second one due to the likelihood of it failing again. -stayed horizontal for a total of 14 days -got medical PTSD from the ordeal -eased back into life and dancing BUT I’M BACK BABY #csfleak #spinalleak #cisternogram #eds #ehlersdanlos #heds #pots #mcas #cptsd #ptsd #adhd #chronicillness #invisibleillness #zebra #zebrave
#Csfleak Reel by @drjoe_md (verified account) - When your nose runs like a faucet, everyone assumes 'allergies' or 'a cold'… but sometimes it is neither. There is a rare condition called a CSF leak
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@drjoe_md
When your nose runs like a faucet, everyone assumes ‘allergies’ or ‘a cold’… but sometimes it is neither. There is a rare condition called a CSF leak, where the fluid that cushions your brain actually drips out of your nose. It is usually: • Clear, watery, and constant • Worse when you lean forward or strain • Often just from one nostril This is not the typical thick, yellow mucus you see with most infections. A CSF leak can raise your risk of serious infections like meningitis, so it is not one to ignore. If your ‘runny nose’ is nonstop clear water from one side, especially after head trauma, sinus surgery, or a bad fall, that is a good reason to get checked out. #csfleak #healthtips #runnynose #medicalfacts
#Csfleak Reel by @ladyspinedoc (verified account) - 𝐂𝐚𝐬𝐞 𝐒𝐭𝐮𝐝𝐲 𝟐𝟏𝟕 | 𝐅𝐫𝐨𝐧𝐭𝐚𝐥 𝐒𝐢𝐧𝐮𝐬 𝐅𝐫𝐚𝐜𝐭𝐮𝐫𝐞 Frontal sinus fractures are uncommon but when they happen, they can be seriou
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@ladyspinedoc
𝐂𝐚𝐬𝐞 𝐒𝐭𝐮𝐝𝐲 𝟐𝟏𝟕 | 𝐅𝐫𝐨𝐧𝐭𝐚𝐥 𝐒𝐢𝐧𝐮𝐬 𝐅𝐫𝐚𝐜𝐭𝐮𝐫𝐞 Frontal sinus fractures are uncommon but when they happen, they can be serious. The frontal sinus sits right behind your forehead and directly in front of your brain. It’s one of four sinus cavities (frontal, maxillary, ethmoid, sphenoid) and helps lighten the skull, shape your voice, warm and humidify air, and filter particles through mucus production. What makes the frontal sinus unique is its location. It has 𝐭𝐰𝐨 𝐰𝐚𝐥𝐥𝐬: 🔹 𝐀𝐧𝐭𝐞𝐫𝐢𝐨𝐫 𝐰𝐚𝐥𝐥 (𝐟𝐫𝐨𝐧𝐭 𝐰𝐚𝐥𝐥) – the forehead side. If only this wall is fractured, the issue is often cosmetic (deformity or contour changes) and carries lower neurologic risk. 🔹 𝐏𝐨𝐬𝐭𝐞𝐫𝐢𝐨𝐫 𝐰𝐚𝐥𝐥 (𝐛𝐚𝐜𝐤 𝐰𝐚𝐥𝐥) – the wall directly adjacent to the brain. If this wall is involved, the stakes change. Now we worry about: • Cerebrospinal fluid (CSF) leaks • Brain exposure • Infection (including meningitis) • Long-term complications One red flag after facial trauma? 𝐂𝐥𝐞𝐚𝐫 𝐟𝐥𝐮𝐢𝐝 𝐝𝐫𝐚𝐢𝐧𝐢𝐧𝐠 𝐟𝐫𝐨𝐦 𝐭𝐡𝐞 𝐧𝐨𝐬𝐞. That may represent a CSF leak - which is never normal after head injury. These fractures usually result from 𝐡𝐢𝐠𝐡-𝐞𝐧𝐞𝐫𝐠𝐲 𝐭𝐫𝐚𝐮𝐦𝐚: 🏈 Sports injuries 🚗 Motor vehicle accidents 🏍️ ATV crashes 🚴 Falls 🤕 Assault Diagnosis requires a 𝐂𝐓 𝐬𝐜𝐚𝐧 to determine: ✔️ Which wall is involved ✔️ Degree of displacement ✔️ Presence of air inside the cranial space ✔️ Evidence of CSF leak Treatment depends on: • Wall involvement • Brain exposure • Ongoing CSF leakage Anterior wall fractures may be observed or repaired for contour. Posterior wall fractures often require surgical intervention to protect the brain and prevent infection. #CaseStudy217 #Neurosurgery #FrontalSinusFracture #SundayCaseStudy #Ladyspinedoc
#Csfleak Reel by @chronically_kiera - "CSF fluid isn't pouring out of your nose, so you don't have a CSF leak." "The blood patch didn't work, so you don't have a CSF leak." "You can't have
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@chronically_kiera
“CSF fluid isn’t pouring out of your nose, so you don’t have a CSF leak.” “The blood patch didn’t work, so you don’t have a CSF leak.” “You can’t have low pressure and high pressure symptoms.” I have been told many things over the years, as have most patients. Patient symptoms don’t always line up. Patients are human. Humans are complex. Humans are not black and white. Although doctors learn in medical school what a typical patient will look like or what the common symptoms are, it’s rare that all participants will display in the same way. If our world is not in black and white, why do doctors think in black and white?
#Csfleak Reel by @drchristinahibbert (verified account) - 🌟This is why I am getting the many MRIs and MRV tests (this week and next)- to check for a CSF leak or vascular compression, or both. Apparently, b
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@drchristinahibbert
🌟This is why I am getting the many MRIs and MRV tests (this week and next)— to check for a CSF leak or vascular compression, or both. Apparently, both can be common with Elhers Danlos syndrome (EDS), which I live with. And my specialist thinks that the face pressure, intense headaches, feeling like my head or face is gonna explode symptoms, are all pointing to these. It sure makes flying even tougher! ✈️ But I wanna live too! And seeing my grand baby (who lives in NY now!) is part of that and makes it all worthwhile! I wanted to tell you about it, though in case you’ve had symptoms like this, because it’s been a long time trying to figure it all out. ❓ relate? Have you had similar symptoms? If so, what was going on for you? Any other questions? 🌟 comment “EDS“ to get my free guide to how to get diagnosed with hypermobile Ehlers Danlos. 🫶🏻 #lifeafterbreastcancer #breastcancerwarrior #chronicwarrior #potssyndrome #csfleak #vascularcompression #breastcancersurvivor #ehlersdanlossyndrome #eds #heds #ehlersdanlos #thisishowwegrow
#Csfleak Reel by @chronicallyjenni - It's EDS & HSD awareness month so I wanted to share a little of my journey with hypermobile Ehlers Danlos Syndrome. There is so much to fit in so here
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@chronicallyjenni
It's EDS & HSD awareness month so I wanted to share a little of my journey with hypermobile Ehlers Danlos Syndrome. There is so much to fit in so here's a little intro before I share hacks & thoughts from the community later in the week so do give me a follow for more! What are you doing for awareness month? I was diagnosed with hEDS in 2016 alongside POTS & a spontaneous csf leak (caused by my EDS). It was only because of the horrific symptoms of my leak that I ended up getting diagnosed with my other conditions but it took 2 years of active searching to find the answers to what was wrong. I'd been relatively strong & sporty all my life but I'd always had odd symptoms that weren't normal but I didn't know they weren't normal at the time! I was always in a lot more pain than anyone else, I had a lot of headaches & I was very accident prone, always covered in bruises & spraining ankles regularly. It wasn't until I had my CSF leak & became progressively more bedbound with that, that the muscles slowly faded & everything got more lax. It wasn't until I was diagnosed that we discovered it in my family. My mum had different health issues but they never seemed connected but as soon as we heard ' when you can't connect the issues think connective tissues' that everything made sense. And my grandad told us about his brother who could do weird & wonderful party tricks. So it's definitely in the genes. When I was first diagnosed with EDS this was something I'd never heard of, I was told it was rare & I felt really lonely. Especially as a 20 year old dealing with the prospect of chronic pain, new symptoms & needing mobility aids. The fact it takes so long to be diagnosed means you are often not believed or understood & that's part of the reason Chronically Jenni exists to be a guide book for others with EDS & HSD to talk about things that have worked & haven't worked for me. The community is incredible & I've met so many amazing people having this shared condition but it's still such a misunderstood condition. It's not just being a bit bendy it's a full on connective tissue disorder which affects so much of how our bodies are put together! #EDS #EDSAwarenessMonth
#Csfleak Reel by @itsdrmax (verified account) - Please tell me that's not CSF… A CSF leak is when cerebrospinal fluid (CSF) escapes through a tear or hole in the dura, the membrane surrounding the
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@itsdrmax
Please tell me that’s not CSF… A CSF leak is when cerebrospinal fluid (CSF) escapes through a tear or hole in the dura, the membrane surrounding the brain and spinal cord. This leakage can cause a headache that worsens when you sit or stand and improves when you lie down. Causes include head or spine injuries, certain medical procedures like spinal taps, or spontaneous leaks with no known cause. A CSF leak creates an opening between the central nervous system and the outside world, increasing the risk of infection like meningitis.
#Csfleak Reel by @drnalliramya (verified account) - 🧠 CSF Leakage from Nose: What You Need to Know! Have you noticed clear, watery fluid dripping from your nose, especially when bending over? It might
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@drnalliramya
🧠 CSF Leakage from Nose: What You Need to Know! Have you noticed clear, watery fluid dripping from your nose, especially when bending over? It might not be just a runny nose—it could be **Cerebrospinal Fluid (CSF) leakage**! 💧 ⚠ **Signs of CSF Leak:** ✔ Clear, thin nasal discharge (often one-sided) ✔ Worse when standing or bending forward ✔ Possible headaches, nausea, or dizziness ✔ Risk of infections like meningitis 💡 **Don't Ignore It!** If you suspect a CSF leak, seek medical help immediately. Early diagnosis and treatment can prevent complications. #CSFLeak #NasalLeakage #BrainHealth #Neuroscience #MedicalAwareness #SinusHealth #HealthTips #StayInformed #ent #vizagent #entdoctor #vizag **🧠 ముక్కు నుంచి CSF లీకేజీ: తెలుసుకోవాల్సిన విషయాలు!** మీ ముక్కు నుండి నీళ్ళలా పారే పారదర్శక ద్రవం వస్తుందా? అది సాధారణ జలుబు కాకుండా **సెరిబ్రోస్పైనల్ ఫ్లూయిడ్ (CSF) లీకేజీ** కావొచ్చు! 💧 ⚠ **CSF లీకేజీ లక్షణాలు:** ✔ పారదర్శక, నీటిలాంటి ద్రవం (ప్రత్యేకించి ఒక వైపున) ✔ నిలబడినప్పుడు లేదా వంగినప్పుడు ఎక్కువగా కారడం ✔ తలనొప్పి, మలబద్ధకం, తల తిరగడం ✔ మెనింజైటిస్ వంటి అంటువ్యాధులకు ప్రమాదం 💡 **దీన్ని నిర్లక్ష్యం చేయకండి!** మీరు CSF లీక్ అనుమానిస్తే, వెంటనే డాక్టర్‌ను సంప్రదించండి. తక్షణ చికిత్సతో సమస్యను నివారించవచ్చు. #CSFLeak #ముక్కులీకేజీ #మెదడిఆరోగ్యం #సినస్ #వైద్యసూచనలు #ఆరోగ్యసమాచారం
#Csfleak Reel by @amywanghiller (verified account) - Now, on the other end, knowing my truth. ⭐️Tell you my story to encourage and empower you if these happened to you.🙋🏻‍♀️ 💁🏻‍♀️Why I chose not to
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@amywanghiller
Now, on the other end, knowing my truth. ⭐️Tell you my story to encourage and empower you if these happened to you.🙋🏻‍♀️ 💁🏻‍♀️Why I chose not to back then? My body told me it was wrong.😑 My timeline told me their “discrepancy” was their own imaginations. 😳 My experience with these physicians told me that I am not the crazy one. 😬 ❓What did they find to make this assumption? ❓How did they get to the point have such a pretty unified view of my FND diagnosis? They don’t matter once you find the right answer. However, EVERY STORY MATTERS, which including mine. I will share more, hope to educate more, offer a possible hope not horror for all my CCI/AAI, EDS, ME, CSF leak, rare disease patients 🦓❤️ #FNDawareness —-#chronicillness #disabled #disability #Quadriplegic #Misdiagnosis #PatientAdvocacy
#Csfleak Reel by @neurosurgeryconnect - 👨🏻‍⚕️A CSF leak occurs when cerebrospinal fluid escapes from the brain or spinal cord due to trauma, surgery, or spontaneous causes. Treatment depen
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@neurosurgeryconnect
👨🏻‍⚕️A CSF leak occurs when cerebrospinal fluid escapes from the brain or spinal cord due to trauma, surgery, or spontaneous causes. Treatment depends on severity and location:🚀 ▪️Conservative: Bed rest, hydration, stool softeners ▪️Medical: Acetazolamide (Diamox) for high-pressure leaks ▪️Interventional: Epidural blood patch (EBP) with 85% success rate ▪️Surgical: Endoscopic nasal repair or craniotomy for severe cases Early diagnosis = Better outcomes! Don’t ignore persistent symptoms. Stay informed with Neurosurgery Connect!✨ [CSF leak treatment, cerebrospinal fluid, brain health, epidural blood patch, neurosurgery, spinal leak, craniotomy, nasal repair, neurological disorders] #CSFLeak #BrainHealth #Neurosurgery #SpinalHealth #NeurosurgeryConnect #CerebrospinalFluid #BrainInjury #MedicalTreatment #SurgicalCare #HealthAwareness
#Csfleak Reel by @brainyleslie (verified account) - Most Neurosurgery referrals are pretty obvious, brain tumor, aneurysm, etc. But some are a little less obvious, even to other healthcare providers. W
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@brainyleslie
Most Neurosurgery referrals are pretty obvious, brain tumor, aneurysm, etc. But some are a little less obvious, even to other healthcare providers. We treat CSF leak, which is often masks as allergies. We treat trigeminal neuralgia, which many people go undiagnosed or are treated with just medication’s. Hemifacial spasm can be cured with surgery, but kept at bay with Botox. Chiari malformation, IIH and NPH can be debilitating but cured with surgery. Perrsistent refractory tremor, and seizures can be treated or improved with surgery. if you’re not sure? Ask!

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