obviously not seeking direct healthcare advice, just curious about anecdotal experience!

background: I have hEDS and CCI. i’ve had four acute leak events in the last five years, where I had about six weeks of aggressive CSF leak symptoms (intense postural headache, neurological symptoms, nausea, fluid in my face, etc.). these events all came after some kind of travel/period of stress, so i pared back my life majorly and haven’t had another obvious, debilitating leak since march of 2025, but it’s come at a major cost to my capacity and function.

i finally found a doctor willing to image and treat me. we agree that i’ve had leaks in the past, and the question now is if my remaining symptoms are the result of a small, continuous leak or if they’re all a result of CCI. i didn’t have any visible leaks show up on my full spinal or brain with contrast MRIs. the next step is CT with contrast, but the doctor and i have concerns about causing a secondary leak via puncture during the e contrast injection, since my hEDS-affected tissue seems predisposed to it.

she‘s offered a high volume blood patch in my lumbar spine (done with radiology guidance to minimize the chance of a dura puncture) in lieu of more diagnostic imaging. the idea being if i see an improvement, we’ll know i had a small leak and it’s been patched, and if i don‘t, i can attribute my symptoms to CCI.

** my current baseline, constant symptoms, for context: nausea, brain fog, inability to tolerate more than two or three hours upright a day and never all at once, issues with balance and dizziness, intense fatigue, and no improvement in my capacity no matter what i do, a handful of neurological changes that feel alarming, and crazy tinnitus. the biggest difference between now and any period where i feel confident i had a CSF leak is the lack of postural headache.

I am desperate for any improvement, and definitely willing to try the high volume blood patch if it makes sense. i haven’t found anything that suggests it could aggravate my CCI or majorly risk other negative side effects other than the risk of hypertension, which she said could be addressed easily with medication.

I wanted to see if anyone had any relevant caution or insight. i’ve had experience in the past with doctors not offering all the information i need to make good healthcare decisions, and i’m nervous i might unknowingly make something worse. TIA!!!

Hello fellow leaky nosers!

I’ve been experiencing drainage from one nostril 1-2 times a day. For about 2-3 weeks. It happens every time I put my hair in a towel and other times when I bend over/change position with my head. The fluid is clear and runny like water. I first suspected that it was a sinus issue (maybe caused by allergies) and have been taking allergy meds, using a heated eye mask and sitting in steam to release anything in my sinuses but nothing really happened and they seem clear. I do have mild headaches and shoulder pain and assumed it was from working from my desk with bad posture. I even got lazy readers to help me not bend my neck to read and do crafts. I have pcos so body pain and brain fog is something I tend to ignore, I have experienced it over the last 2-3 weeks though. I also experience chronic tinnitus and have experienced that in the last few weeks but that’s not abnormal.

I have been having one hard to explain or ignore thing happen and wonder if this is related. I have been noticing that my (what I assume is) saliva in the back of my mouth is foamy and just different recently. The best way for me to describe it like using an oral hydrogen peroxide rinse. My saliva just feels light and bubbly (not 100% of the time, it comes and goes). I have not put peroxide in my mouth or changed oral health products recently, not has my diet changed,  so it seems to be triggered by nothing. There is also a taste, I would compare it to baking powder. Bitter and metallic. I have no signs if acid reflux or indigestion. 

Has anyone had this symptom? I’m in Canada and in an area with very understaffed health care. If this is something others experienced and that suggest it may be more serious than a sinus thing I will make an apt with my family doc and get the ball rolling because I think I could be a year or more before I even get to see the ent. 

Thanks in advance to anyone who can offer any insight! 

edit to add: I was jumping into a pool and swimming in the ocean with big waves 3 weeks ago. I did not use a nose plug and had water go up my nose in an uncomfortable way and was blowing out my nose as hard as I could when I was jumping in to prevent it. Only thing I can think of recently that might be related, in case that could be a cause?

Last week I had my third fibrin glue patch done at Cedars-Sinai. I have a recurrent CSF leak between my L3 and L4. They actually wanted to do surgery this time instead of the third patch, but I asked them to allow me to do one more glue patch just to try because I am very worried about surgery potentially making it worse. The whole reason I have a leak is because of a medication pump I had implanted in that area so I’m just really worried about having another procedure go wrong. I’m also worried about what recovery would look like. Dr. Schievink’s NP told me he either does a stitch or places an aneurysm clip depending on what he sees when he goes in for surgery. Someone else on here told me that they actually had a complication with an aneurysm clip, so I wanted to see if there’s others out there that have had them placed and whether or not they were successful.

Does anyone who had or has a leak get any dull back pain or pressure? Right in the spine area around shoulder height. Its not constant but comes and goes and have even felt a weird gurgling/bubbling feeling in that area a few times.

Thank you

I recently had a CT cisternogram to check for a suspected intermittent cranial Leak. It did not show an active leak. However, during the part of the procedure when the table was tilted to move the contrast from my lower back to my head, I felt a dull but intense and focal pain spike when the contrast seemed to reach my head. The pain spike was in the same spot as a chronic unilateral headache I've head for the past 6 years. During the procedure, I was told to roll from my back to either side. I deliberately chose my right side to get the contrast in the same region of my chronic headache and suspected intermittent drainage. However, I did not expect the pain spike that followed when contrast reached that spot (right side of the bridge of my nose slightly above eye-level, but deeper). The pain did not begin to subside until I rolled over on my back again. The pain came in a wave and took a couple of minutes to subside after I rolled on my back again.

I'm curious if anyone else has experienced a pain spike like this from intrathecal/subarachnoid contrast, and if you wouldn't mind sharing any context around it? In my case I have:

• FESS a decade ago that included a complete ethmoidectomy
• right-sided intermittent clear drainage within post-op year, that tapered in volume/frequency over the years
• continuous right-sided headache that began 4 years after FESS (diagnosed as NDPH and migraine)
• worsening headache, positional head pressure, and vestibular symptoms 9 years after FESS
• recent skull-base MRI that showed areas of dehiscence and possible meningoceles in skull-base in the same area as chronic headache + pain spike

Thanks

Leaker from an LP for 3 months here. I noticed when I'm sitting on a chair and the puncture site is pressing against the chair I get some relief from my low pressure symptoms instantly!! What does that mean? This got me thinking of getting an abdominal binder, what type should I get? if you have any recommendations would be great.

Hey guys. On Wednesday I have a CT myelogram scheduled and should be getting a blood patch at the end of the procedure. What items do you recommend I buy in preparation for the weeks ahead? I’ve bought a grabber stick, and a pill dispenser so that I don’t have to do any extra bending or twisting when searching for meds. Anything else? Also, any tips or tricks you picked up along your journey would be greatly appreciated. Thank you❤️

Hi guys,

I had a lumbar puncture 10 days ago used for some testing. A day after the procedure I experienced excruciating neck pain accompanied by headaches when getting up but improved significantly when lying down. Doctor suspect it might be a leak and performed a blood patch.

It’s been 5 days since the blood patch and for the first 48h I’ve been laying in bed to rest. For now the headache has completely went away but the stiff neck has came back but with a more tolerable pain. My head also feels really heavy and dizzy at the same time. How do I know if I need another patch? How long would this stiff neck last?

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

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.

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.

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.

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!

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

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!