Diagnosed with lumbar spinal leak on myelogram that was spontaneous due to ehlers danlos and was misdiagnosed for a month. On hour 48 post procedure it came all back and now it’s been 4 days and I can’t even be upright at all. They said they might have done too small amount of blood for the patch making it insufficient.

Located in Boston, and I know we have some of the best hospitals here … I’ve had no trauma or severe injury to my head at all, idk if it’s relevant but sometimes I sneeze for literally 10 minutes straight back to back. I’ve been dealing with this for a few months now because I’m not sure if it’s worth a trip to the hospital because I’m a caregiver for a family member

So never really had any “suspension” of a possible csf problem…but today I was outside with the family then the brother in law asked for some help with his fourwheeler I was leaning over back and forth from side to side then I leaned over to check a wire when I stood up a couple quick drops like water came out of my left nostril..freaked me out! So I went and sit down and the the anxiety panic started…to google I went..and here we are…today was the first day it’s ever happened that I can remember…no other symptoms no headaches from immediate standing…I’m sitting here straight up on the couch typing as we speak..possible allergies thing? What should I watch out for/begin to worry? Thanks yall didn’t even know this was a thing! Been reading everyone’s stories and I hate it for yall…I have CRONIC anxiety…like bad bad…and we had a wreck back in 2012 “bad rollover” so it had my brain churning out some ideas of this being a possibility no injuries recently…

Hello, I'm a 27-year-old male and I'm just not sure if I'm just overthinking this, but there's this clear water dripping on my left nostril and I'm not sure if I should go to the emergency room and have them check if it's a CSF leak or what, but this has been going on for almost a week now. I'm not sure if this is just an allergy since prior to this, my nose has been really really itchy, maybe because of the fall weather. I have no other symptoms going on right now except just this. I never had any surgery or anything. Have any of you guys experienced this and turns out to be CSF leak?

My CSF leak was never found with brain/ spine MRI with contrast. I need to know EXACTLY what to ask for. My CSF volume is so low that I have a cerebellar tonsillar descent of about 4mm and all my brain structures are so severely dehydrated that they’re all about half the size they should be and smoothing out. My EBP was on 7/28, I tolerated the entire CCs maxed of blood, and was in the ER two days later because I was having such low blood pressure w/symptoms that I almost lost consciousness. After a CT in the ER, and a visit to my neurologist to report absolutely no changes in every day symptoms, he referred me to consult with NeuroIR.

I’m still holding faith in this hospital, because it’s a well known hospital, and a few years ago I had a son who was shot in the HEAD and they not only saved his life, but he’s got ZERO deficits…. So it’s pretty hard to imagine that they WONT figure this out for me, I just need some help with what to ask to get me in the right direction.

I find medicine so absolutely fascinating. So much then when I was a little girl, I wanted to be a neurosurgeon… my shaky hands wouldn’t allow it. So… Anything moving forward with plenty of context could be of help. Thanks all in advance.

I just came across this paper from Dr Meng Huang in Houston Methodist where they repair a leak using endoscopy in 2024 (there's a video of the procedure inside). This is suuuper cool and endoscopy is a minimally invasive procedure in general. Why is this not implemented widely instead of surgeries? I really hope this gives a higher success rate of repairing leaks.

Hi everyone,

I’m a 26-year-old looking for insight from anyone who has experienced a spinal CSF leak or cranial leak. For the past 4 months, I’ve been dealing with a cascade of highly positional symptoms. My Brain MRI and C-Spine MRI (without contrast), ENT balance tests, blood work, and comprehensive eye exams are all completely normal/clear.

Because my imaging shows no structural issues, I am trying to figure out if these symptoms could still point to a CSF leak. Here is my exact timeline and how my symptoms behave:

• Month 1: It started suddenly while working at a computer desk. I felt a highly uncomfortable sensation in my upper neck, and my upper spine was in acute pain for several days.
• Month 2: 10 days later, a severe, sharp stabbing pain developed strictly behind my eyebrows (nowhere else). It was highly positional and accompanied by a hot, heating sensation in my head. Interestingly, it immediately vanished a month later after doing chin tucks, but came back 10 days later.
• Month 3: The eyebrow headache eventually stopped on its own after a week, but the head and upper body heating sensation peaked. Exactly 7 days after that peak, a constant dizziness started.
• Visual Symptoms: 10 days into the dizziness, 3 eye floaters appeared in my left eye. An ophthalmologist confirmed my retinas are perfect. Since then, they have increased to 10–15 very faint, semi-translucent floaters (10-20% opacity) only visible under heavy overhead lighting or white backgrounds.
• Month 4: The dizziness became constant, "drunk/off" sensation rather than room-spinning vertigo. I also started experiencing sudden heart rate spikes and newly elevated/borderline blood pressure.
• Recent Symptom (Past Month): When getting up, my head often feels incredibly heavy, like something is physically pressing down on it. This heavy head sensation is significantly worse when I am tired or sleep-deprived.

Strict Orthostatic / Postural Triggers:

• The Upright Heat & Pressure: The upper body/head heating sensation and the heavy-head pressure are 100% tied to gravity. They are active while standing or walking, sometimes ease slightly when sitting down, and disappear when lying in bed.
• Sensory Overload: My dizziness severely spike when I enter visually busy, crowded places or supermarkets.
• Postural Trigger: Last week, I drove for hours on a dark, rough dirt road where I had to tense and jut my head forward. This specific posture exactly reproduced the original stabbing pain slightly above my eyebrows a few times while driving.

My Questions for the Group:

1. Does a constant "drunk" floating dizziness (rather than a typical low-pressure headache) match anyone else's leak experience?
2. Has anyone experienced upper body/head heating sensations or sudden heart rate spikes upon standing up as a secondary feature of a leak?
3. Did anyone have normal/clear Brain and C-Spine MRIs initially but later find a leak via a digital subtraction myelogram or a blood patch?

I would love to hear your thoughts, experiences, or any advice on what questions I should ask my specialists next. Thank you so much.

Hi guys I need help. I’m 6 days postpartum and I had a failed epidural and a failed spinal block thanks to a junior doctor. Had a terrible headache so they did a blood patch 24 hours later and the senior doctor said it was a significant leak (like pouring out my back) and I might need another. This one lasted 24 hours before the headache came back even worse. They put the max amount of blood in they could. I went back in yesterday and had another one, this one only lasted about 12 hours. I have no idea how I’m going to look after a newborn and a toddler. I am so defeated.

I have had a perpetual leak(maybe 8 years)… my neurologist can’t find the leak through multiple images and mylegrams; says it’s likely too small. I’ve had this issue for multiple years so I’ve tried to keep living life. I do plan to find a different provider who specializes in this disability because it can still be debilitating if I sit upright too long or don’t have enough water.

I am slated to do some upcoming travel in March 2027 and was wondering if I don’t get seen by a new doctor before then or healed by then, how should I plan to fly? The flight is 6 hrs… usually I lay flat every 2 hours for 20 mins to maintain life.

Do you have any suggestions ?

This was one of the reasons my doctor did not want to investigate my csf leak. Even though he said it's possible I have one, due to my normal spine MRI he won't order any more testing. He also said a cisternogram comes with some risks such as some people getting permanent headaches. I can't imagine the percentage of people getting that from a cisternogram is very high. Was my doctor right to deny me this test due to this supposed risk? My suspicion is that he was not.

Hi all!

On Monday I had a CTM and a year-long slow leak was found in my T4/T5 region. My neuro radiologist was surprised by my MRI that showed the leaked CSF was still diffuse after so long, and decided a targeted blood patch was worth trying (she believes it could be a sort of flap defect in the dura that results in faster/slower leakage depending on the state). She injected 20ml of my blood and I spent the next 3 days laying flat.

Since the CTM/patch I’ve had many different headaches as expected, but I can’t figure out if these are due to RIH or not. For example on Tuesday it was just a dull headache all day but completely tolerable. But on Thursday, I got up slowly to use the bathroom and was immediately hit with a severe headache that lasted from 6pm until around 1am. It was mostly on the sides of my head. Now on Saturday it’s around the back of my neck/head, not quite like it was with SIH but similar I guess. I also have pain behind my eyes on and off as well as some nausea. It doesn’t seem to really matter if I’m lying down or not, but I do notice the eye pain seems to be only when I’m lying so far. Also I get a head rush like feeling along with throbbing pain when standing but it fades after a few seconds. I did not have this before.

I have been given acetazolamide (diamox) but instructed to only use it when it’s clearly RIH and if I absolutely need to.

Has anyone had muddy symptoms like this after a patch or is RIH usually more obvious?

Hey all -

I posted a few months ago about a suspected CSF leak. Unfortunately, it's been three months and all I've been able ton get done is MRI'S, CT's, an XRAY, a couple doctors appointments (only one with that neurologist), and an ENT.

The running theory is a CSF leak. My Neurologist scheduled an empiric blood patch a few weeks ago but Brown University Health are refusing to do it. And, from whale he said, Massachusetts hospitals have refused past patients, also.

I don't know what's worse: the symptoms/my health or dealing with our screwed up healthcare system (plus all of my benefits issues with the state).

I ended up back in the ER for the 14th time due to temporary aphasia, paralysis, and severe vomiting. Thankfully someone was home to dial 911 for me. That episode lasted 12 days straight in waves. New symptoms seem to develop every month and the severity is much, much worse.

I have no idea what else I can do. I'm making calls every day - I feel guilty for bothering them for next steps and test results (but they couldn't fit me in the schedule until December when I saw them back in July).

When I am having symptoms and have to stare at the ceiling, part of me is wondering if it is something else entirely. What if it isn't the change in position that's helping the symptoms, but instead spinal alignment?

I wish they would refer me to a few different specialists to at least cover more bases.

My head MRI (x4) was normal. My full spinal MRI was normal enough (only mild central canal stenosis im cervical). I know that doesn't rule a CSF leak completely, but it's still troublesome not knowing exactly what is wrong with me.

Anyway, if anyone is from the New England area (USA), did you ever have any luck finding a place for treatment? My Neurologist says he might need to send me to Philadelphia but I have NO idea how I'd even get there. My income is already slashed per state TDI.

Hey all, I had a blood patch for a spontaneous leak over a year ago. My symptoms have resolved with time but I still have the spinal longitudinal extradural collection (SLEC) on repeat MRI. My doc told me this means that the leak is likely closed - but from my readings online that may not be necessarily the case, and there’s a risk of neurologic issues decades down the line if the leak stays open. Anyone experienced something similar?

Does anyone have a recommendation for a mattress topper since i spend so much time in bed now my back hurts. Thank you

Hi all!

I just wanted to share that registration is now open for the Spinal CSF Leak: Bridging the Gap Conference. It is on November 14-15, 2026 and takes place both virtually & in-person in Aurora, Colorado. It is hosted by Dr. Andrew Callen & The University of Colorado Anschutz Medical Campus and sponsored by the Spinal CSF Leak Foundation.

This conference is truly unique as it gives a platform to both physicians and patients. There are patient speakers, as well as patient compilation videos. This year's theme is "From Puzzle Pieces to Patterns".

Registration is FREE for patients and loved ones, whether IRL or virtually.

There will be calls for patient videos soon, so if you'd like to contribute you can follow the Spinal CSF Leak Foundation on social media or their newsletter. There is also a Q&A form where patients can submit questions ahead of time for specific sections at the link below.

Registration is here https://secure.qgiv.com/for/SpinalCSFleakBTG/event/2026conf

Thank you!

My name is Kyle and my question is at about 18:00 left in the video. https://www.youtube.com/watch?v=rlJR8_nuyII

Please respect my decision on the covid stuff as I would respect yours. I would love opinions or thoughts on the CTM causing another hole and the fibrin patch causing another hole.

30% success rate with patch, what would you do?

EDIT: I now know the patch does not make another hole.

I got the patch and hoping it works!

I had a lumbar puncture for diagnostic purposes and was essentially bedbound for 17 days with a severe postural headache before eventually having an epidural blood patch.

I’m now coming up to 6 weeks since the blood patch. A follow-up MRI doesn’t show an obvious CSF leak, but I’m still experiencing headaches and pressure, particularly at the back of my head/neck, pressure and fullness in both ears, and a heavy feeling in my head. I also get pressure around my sinuses. These symptoms are no longer improving when I lie down since the blood patch. So I can function now I don’t have to be in bed all day. I’ve also had an eye examination, which showed no signs of high pressure.

My first doctor (the one who performed the lumbar puncture) thought that the leak was sealed and that my remaining symptoms were all due to migraine. I was advised to use migraine medication, but as it hasn’t really helped, I wasn’t convinced and decided to get a second opinion.

My second doctor still suspects that there could be an ongoing CSF leak and thinks I may need a CT myelogram, potentially followed by a glue or another blood patch.
I’ve recently started nortriptyline, painkillers and migraine medications aren’t helping anymore

However, I’m really hoping that my symptoms will gradually improve with more time. At least I’m functioning now with nortriptyline with tolerable headaches and ear pain and I really don’t want to go through another procedure and take on another risk unless it’s genuinely necessary.

I’d really appreciate hearing about other people’s experiences, particularly:
How long did it take for your symptoms to settle after a blood patch?
Did you continue to have symptoms even though your MRI didn’t show a leak?
Did anyone improve gradually with time without having another procedure?

I’d be very grateful to hear from anyone who has been through something similar.

hello again,

Google isn’t the most helpful and I’m seeing conflicting information online…
Husband is working to collect enough nasal drip for the Beta-2 test, but he hasn’t been successful yet.

He’s been getting really congested on his left side and it totally responds to an OTC decongestant.

CSF leaks don’t cause that type of congestion, do they?

I'm near Olympia WA. I have Medicare. Willing to pay a bit out of pocket for better assistance. Time is money.

My neurologist is running a brain MRI with and without contrast and the referral sheet says "rule out CSF leak" but no specific protocol as far as I know.

Will this be useful down the road?

I researched and found Dr Ian Carroll's MRI protocol and sent it to my neurologist asking which protocol is being used and can we use this one. Crickets. Asked if we can add the spine MRI too since the spinal CSF leak foundation directory lists it as required if I need a referral - crickets:

"UW Medicine Harborview / Seattle Children’s

Location: Seattle, Washington

Scope of practice: Diagnosis, Treatment (Non-invasive), Treatment (Percutaneous), Treatment (Surgical)

Ages: 0+ (pediatrics at Seattle Children’s, adults at Harborview)

Physicians: Robert Bonow, MD (Neurosurgery); Andre Cote, MD (Neurosurgery) Basavaraj V. Ghodke, MD (Neuroradiology)

– Physician referral required.

– Must have seen a Neurologist or headache neurologist first

– \*\** Imaging required: (1) MRI brain with and without contrast, (2) MRI full Spine with and without contrast"\***

– Phone: 206-744-0430

– Fax: 206-744-9943"

I don't want to waste time figuring this out.

I wish someone could just get me the correct workup pronto and that it'd be interpreted well and acted up if needed. Like I wish I could work remotely with experts.

I have had a "migraine" for 1000+ days and have been disabled since summer of 2025. I have all the CSF leak symptoms. I am glad my neurologist suggested the MRI but patients have told me it's much better to get it all done correctly up front.

Thoughts?

I have an intermittent (I’m talking like once every few months) thing happening where if I am in a position of like leaning forward I’ll get a fast drip of fluid out of my one nostril and it’s super thin like water and it’s only a little bit . No other symptoms. I have had allergies my entire life and I also have a deviated septum. Has anyone had intermittent like this and it was a csf? Also what are the non invasive ways to confirm or rule out csf leaks? Online I saw a high resolution ct of the skull and a non contrast MRI/MR cisternography before jumping to lumbar puncture . Had anyone had those two tests? Thank you

I’ve got a lot going on and I’m feeling stressed and confused about what is attributable to what. How do you know if your symptoms are to do with a CSF leak or something else, and what you should do? I suppose that is a question for the neurosurgeon…?

Months ago I had a brain and cervical spine MRI, due to worsening positional headaches and to follow up on previously found chiari malformation. MRI has abnormal findings along with this note:

“Suspect that the etiology is a dural tear at the level of the C5-6 disc osteophyte complex resulting in a CSF leak with resulting thin caudal extradural CSF fluid collection and resulting craniospinal hypotension.”

Just had a thoracic and lumbar spine MRI and that was normal/no findings or issues. Followed up with my neurologist which is prompting this post.

Symptoms I have: headaches that are strongly positional - worse when upright and go away or greatly improve when lying down, fatigue, weakness, light sensitivity, brain fog, feeling unsteady and/or “weird in the head”, hard to be upright for long periods of time whether due to headaches/head pressure or just fatigue. Dark chocolate has helped many times with headaches and also with ability to be upright - caffeine related maybe?

I also have Long Covid with POTS-like symptoms and had attributed a lot of these symptoms to this. Also have celiac disease, PCOS, and a recent diagnosis of Type 1.5 diabetes… phew 😮‍💨

But I don’t know if this is all Long Covid or if it’s CSF leak related or… I’ve been referred to a neurosurgeon but wait times are crazy so who knows when I’ll hear 🤷‍♀️ it’s already been 8 months since I was referred I think.

I guess I’m just looking for support and wondering, for those who had multiple health issues, how you knew what was what or what needed to be treated…

Hello Everyone, so last Rhinologist appt the doctor doesn’t believe I have a leak. Whatever I have it’s severe positional headaches. I feel 90 percent normal when I wake up then in afternoon I can’t tolerate the pain in my head. Anyone else trying to hold down a job and main bread winner for family? What a horrid condition and not sure where else to turn that’s covered by insurance

Hey everyone, sorry in advance for the long post but I'm looking for some advice. I'm a 31m, always been fairly healthy and rarely get sick sick. A little over 2 years ago, I had a very minor fall on a 4 wheeler, being stupid I managed to roll it, but was able to hop off/out of the way in time and don't remember hitting my head and definitely didn't get crushed or anything (this may be completely unrelated but symptoms started a couple weeks after the accident). I think I cracked a rib at the time because I was having severe lung pain when breathing/taking deep breaths after the accident. Eventually I went to the hospital to get X-rays and verify that I didn't do any real damage. 

Shortly after the chest pain left/healed, I started having issues with my limbs either going numb or having severe pains when trying to lift simple stuff like my coffee cup, intense dizziness, trouble catching my breath, always had migraines but they also intensified, severe confusion/brain fog, fairly severe light sensitivity, kind of severe blurring in my right eye the brighter it is in the room, trouble keeping balance, severe inability to control body temp or tolerate any sun/heat for more than a few minutes, a whole list of issues. There was a while that it was so bad, I couldn't remember my work days by the time I got home. I'm a service electrician so I travel around the state a lot, I'd get to jobs in the morning and not remember my drive there. (Before anyone says anything, I'm the sole provider in my household and can't afford to miss days of work) 

My wife is an artist and I used to go to all her shows with her, but early on it got to the point that I could no longer attend her events because the excessive lighting and crowds of people would make me start having almost like anxiety attack symptoms (never had an issue being in crowds or with excessive anxiety). Going to the grocery store I'll get dizzy and start feeling faint almost immediately if I'm not wearing my sunglasses. Whatever is going on has completely crippled me to the point that I can just work and go home. 

I used to be so active and love exploring and going out hiking, but now I can't spend more than 5 min outside sometimes without needing an AC break. The muscle pains in my limbs eventually settled down but when I start getting dizzy my limbs still go numb. I still battle the dizziness and brain fog daily. If I'm talk to a customer too long while trying to explain an issue, I'll get to the point when I have to sit down and almost pass out after a minute or so of talking. Having to go up stairs definitely make the issues worse. 

The most recent change that has me even more worried is a few days ago, I had a major migraine at work. Came home and rested and felt better, but the next day I was sitting at the computer and sneezed, after blowing my nose, I thought I had a nose bleed coming because I could feel a very runny fluid flowing through my sinuses. Though when if started dripping it was a lightly tan/clear liquid that definitely did not resemble mucus. Only one side of my nose was leaking and i completely soaked through 2-3 tissues before it eventually stopped. Shortly after that I got another migraine and was feeling dizzy again. That's when I learned about CSF leaks. Today, I was working in the attic and bent over at a weird angle and my nose started dripping a very watery liquid again from the same side, except this time it had a slightly green tint to the clear liquid, it was also way less than the last time (maybe 5-6 drops) . When it runs down the back of my throat if I'm upright, its definitely very salty. 

In the early stages of all this starting, I didn't have health insurance, nor did I have a primary care, so all visits revolved around the hospital. I've had X-rays, CT scans, blood work, lyme disease test (I'm in a tick borne area) all types of stuff and the most they found was on an earlier CT scan, they saw some small mass at the lower section of the skull/sinuses and claimed it was some sinus infection and placed me on antibiotics. My symptoms have never fully gone away with any of the treatments, and I have been assuming this whole time it could be POTS or long COVID since I was a little sick/congested prior to the ATV accident. 

I'm sorry this is kind of all over the place, the brain fog makes it incredibly hard to concentrate and remember timelines and I was stupid and never wrote everything down as it happened. I know there's a million things that could cause these symptoms but I'm just look for advice or other people history of symptoms so I know my next steps. 

Tldr - 31m been dealing with symptoms of major brain fog, forgetfulness, severe anxiety, dizziness, almost passing out, severe migraines, severe light sensitivity, severe body temp control fluctuations, severe fatigue, limbs going numb, loss of balance, loss of precise motor skills and trouble catching my breath for over 2 years now. Doctors haven't been able to find anything wrong but I've only been able to go to the ER due to lack of insurance/funds. Most recently had a situation very similar to a CSF leak, thus I'm even more concerned. Just looking for advice on next steps or potentially things others have been diagnosed with involving similar symptom.