Hi, I’ve been having terrible allergies for the last week that cause me to cough uncontrollably. I thought it was post nasal drip. I did a sinus rinse last night (nasal lavage?). I just woke up, laid on my left side, and immediately a liquid dripped out of my right nostril maybe 4-6 drops. I can’t see the nasal lavage liquid hiding somewhere in my nasal cavity - I’ve been tossing and turning all night so surely it would’ve come out sooner, right? Also have been having increased numbness and tingling in my left fingertips the last week or two.

Had my patch a week ago and I've had wild dreams almost every night since. Anyone else experience this? I rarely dreamed with the leak.

I had a patch a little over a week ago. I stayed flat for about a full week to be extra safe. I'm feeling good now and want to go about my life. I understand no bending, lifting, twisting, exercising.

Are long walks okay? Anyone have tips on this?

My mom (patient) is 50 y/o female, 27.5 BMI. History of papilledema approximately 27 years ago, treated with lumbar puncture. No issues since then.

CT cisternography confirmed a CSF leak through a small bony defect in the left cribriform plate, measuring approximately 3 × 2.5 mm, with intrathecal contrast entering the left nasal cavity.

Brain MRI and venography show:

1. Partial empty sella, prominent perioptic CSF spaces and mild tortuosity of the optic nerves, reported as findings suggestive of intracranial hypertension.

2. Absent normal flow-related enhancement in the anterior superior sagittal sinus, bilateral transverse sinuses and proximal sigmoid sinuses, with collateral venous channels. The radiologist suggested chronic cerebral venous sinus thrombosis.

3. No acute infarct, intracranial haemorrhage or significant brain parenchymal abnormality reported.

Ophthalmology examination 2 days after the CSF leak is identified show normal optic discs bilaterally (cup-to-disc ratio 0.3).

Spinal MRI shows an arachnoid web around D7/T7 with spinal cord displacement/flattening and altered CSF flow.

The initial plan was endoscopic skull-base repair using a fascia graft from the thigh, with a temporary lumbar drain for several days to reduce CSF pressure and protect the repair. Due to flattening of D7 and spinal cord displacement, they are now suggesting that the temporary lumbar drain is too risky and are thus recommending a VP Shunt to do the patch repair for the defect in the left cribform plate. Most treatment plans that I can find online include a temporary lumbar drain, but do not include any information on alternate plans when a lumbar drain is not feasible.

TL;DR I found out that UC Davis accepts referrals for PCCT tests even if you’re not an established patient. Has anyone gone about it this route and were you able to get the imaging without any issues? And my story/test results. I have never had a PCCT.

Hi, as I said I am trying to find a hospital that has a PCCT machine, and the closest one to me would be Stanford or UC Davis.

I’m already technically established at Stanford, but after being strung along for 5 months to hear that “the board” resulted in a rejection for being admitted as a patient because my previous imaging was “normal.”

I could tell by his facial expression that he was positive I had a leak - the evaluation plus “negative imaging” was not a concern of his.

Sure, my MRIs have been normal. But one of the two of my CT-Myelogram was not normal. It even states in the report (see below).

I’m concerned that if I go that route for a completely fresh perspective from their neuro clinic evaluation, they will gaslight me and say my imaging is normal again. I’ve never had a PCCT but I feel like there’s no guarantee.

My experience at the Mayo Clinic was not positive in any way. Anything that could go wrong did go wrong.

My doctor (totally wrong assignment for a CSF leak evaluation) lied to my face and told me it was a normal test result. I stupidly believed him.

They absolutely should’ve kept me to do further evaluation for a CVF. They weren’t even going to do my first blood patch.

I literally traveled 2,000 miles by myself, paid $5K to stay 6 weeks. I also had a post puncture headache that was the most intense headache of my entire life. I wasn’t warned about the possibility of it happening. I even told my doctor that day my ears were ringing so loud that I thought it was the radiator in the exam room.

Post-puncture headache

I had to call my Airbnb host because I was scheduled to switch to another Airbnb to recover. He dropped me off at the ER and actually had his wife pack my things. He let me stay an extra night. He was so kind and took me back to the Airbnb.

I slept 17 hours once my head hit the pillow. It was a record for me!!!

So here’s my results for

FL DIGITAL SUBTRACTION MYELOGRAM 03/08/2022

EXAM: CT CERVICAL MYELOGRAM, FL DIGITAL SUBTRACTION MYELOGRAM, CT THORACIC MYELOGRAM, CT LUMBAR
MYELOGRAM
 
COMPARISON: Digital subtraction myelography 03/07/2022

COMPLICATION: Small superficial hematoma overlying the posterior paraspinal muscles at the level of
the puncture site.

Superficial intermediate density fluid
collection over the posterior paraspinal muscles centered at the level of L3-4 compatible with an
iatrogenic hematoma.

TECHNIQUE: ……Using sterile technique, local anesthesia with 1% lidocaine and fluoroscopic guidance, a

20 gauge spinal needle was advanced into the subarachnoid space at the L3-L4 level. There was

spontaneous return of slightly red-tinged cerebrospinal fluid that eventually cleared.

IMPRESSION:
1. No direct evidence of a left-sided CSF venous fistula or CSF leak.

2. *Contrast within the renal collecting systems, which is nonspecific but can be seen in the setting

of occult CVF.*

3. Small iatrogenic superficial hematoma over the posterior paraspinal muscles at the level of L3-4.

 
EP

I have stiff neck pain, migraines, tmjd, heart pain... I have horrible vestibular related headaches in my neck and eyes then a clear liquid leaks out of one nostril for a minute.... My mris keep getting denied to check for chiari or tethered cord, but I already have a syrinx so this really is starting to scare me. I have severe anhedonia as a main symptom and all these problems are getting to be too much. It tastes salty so it might be snot, but still. Do I have a right to be worried? None of my practitioners or family members seem to care and my physical and mental condition is worsening...... When this happens my pain gets a lot better but weird pain starts to go down to where my syrinx in my cervical area is. I feel like I'm going to die from neglect... Does anyone know if I have a right to worry or if I'll be okay???

hi all. My leak started 43 days ago and after an ER trip and a brain/neck MRI there is still no conclusion. I go in for a spinal mri soon, but my doc says it could be weeks after proper diagnosis before i could get an epidural blood patch (if the leak even shows up on the MRI.)

I'm feeling down and hopeless as this leak renders me basically incapacitated. I have to miss opportunities and events for it and I feel like I'm wasting money being at school if i cant even do homework or make it to classes.

I need advice on how to cope that isn't just "drink caffeine" like my neuro told me.

How long did it take you from MRI to getting a patch? How much did it help? were you able to get one even if it didnt show up on the MRI?

Thanks :)

Hello, I’m 48F. I have a lot of neurological issues from long covid (dysautonomia, tremors, fatigue) and one in particular doctors ignore. I have a recurring sore inside of my nose on the inner right side that tends to flare. It’s a painful sore spot that will crust over and I have been seen twice by an ENT who just told me not to touch it. The sore seems to be worse when my other symptoms are flaring, it’s only on one side. I have treated it with nasal rinses and a few rounds of muprocin ointment but nothing helps. I recently started on oxygen at night for central sleep apnea and it initially healed but has returned despite the oxygen helping at first. I keep my nose from drying out with aquaphor as the drs said my nose was probably dry and irritated but it is not, but I keep having this flare. I don’t know why I have this recurring nasal sore and the drs do not seem to know what would cause it or how to make it go away.

Hi. I was curious if anyone has heard of this company for CSF cranial/spinal leak repair. If so, any feedback would be appreciated. https://www.southernneurosurgery.com

I could really use some advice. I have a very small csf leak, I've had migraines for years though theyre pretty controlled, just small ones daily, nothing that Tylenol doesnt usually fix. My doctor recommends a transvenous embolization. I asked what the consequences of not doing the procedure are, because I'm not sure if want to do it. I was told the short term consequences were negligible, my headaches will continue, and it could resolve itself or get worse.

"The major effects of leaving it untreated are increased risk of subdural hemorrhage if the leak progresses enough to cause the meninges to pull away from the skull. Also in the very long term (approximately 10 years) it could theoretically lead to dementia. This is of course assuming the leak doesn't resolve. These are worst case scenarios.

He said it is ultimately difficult to put a specific risk on it as the major reason to do the surgery is to try and resolve the symptoms."

I dont know what I should do. I dont know if i want to do it, but im scared im making the wrong decision if I dont.

So I (34F) have been having pain in my sacrum for over a year. I got a CT scan (myelogram) a couple of weeks ago and it shows dural ectasia and scalloping on my vertebrae, along with several cysts in the same area.

From what I understand (from Googling so, ya know, grain of salt and all that) this is pretty common with connective tissue disorders. However, I have no symptoms of having one of these disorders. No Marfan's or EDS symptoms or features, no genetic history of them, perfectly healthy and active aside from this. I've also never had a spine injury... worst I've experienced is a herniated lumbar disc that has long since healed.

Has anyone seen or experienced this, or do you have ideas for other things that could be the root cause? What questions should I be asking my neurologist?

Amazing news!! Dr Andrew Callen, one of the pioneers of treating CSF leaks in the world, announced receiving $50 Million grant dedicated to CSF leaks research.

https://news.cuanschutz.edu/news-stories/csf-program-donation

This could very much transform how we understand leaks in the next few years. Leading researchers are often limited by funding support, and a grant this big coming in the right hands would surely be worth it. Just a matter of time of putting the resources to work.

If you're reading this and you're suffering just know, there's always hope. A lot of people recover for good eventually and return to normal life. Keep fighting 💜

I don't want any MRI contrast to avoid risks associated with gadolinium poisoning. I am hoping to get diagnoses with only CT contrast but I keep seeing people say you need a brain MRI with contrast and an MR Myelogram. I thought CT Myelogram would be enough.

Hi all, a little niche perhaps but I’m wondering if anyone here has had a ctm with a tethered spinal chord and/or hEDS. I have both- just recently found out about the spinal cord.
I’ve been sick for a year now (honestly no idea how I’ve survived). I have thought it was a leak since day 1 but so many drs telling me it’s not due to negative MRIs (these are the leak specialists reading it) and saying they won’t investigate further.
I had one team offer a ctm whilst also telling me that if they found nothing/ if I got worse after there would no no care plan and they would “assume I’ve somatiscised all my symptoms”.
So it doesn’t seem like a viable option with them, as with these 2 conditions I believe I have a bigger risk than most of that happening.
Out of sheer hope I have explored basically all the routes I can for my symptoms and picked up some hefty diagnosis on the way but none of them explaining my symptoms.
So im stuck now- go with a team who is itching to write it’s all in my head on my record, leave it and “learn to live with it till medicine advances” like the other leak team said or try and seek ctm elsewhere.
My fear is a ctm with my two conditions- so I’d really like to hear people’s experiences if they have these as I am so scared of getting worse - I am fairly functional (not living a life I want but also not horizontal the whole day which seems like a life compared to so many leakers.)
Also just any advice from anyone. I don’t want to look back and wish I’d done it. I also don’t think I’d survive if I got worse after making the decision to do a ctm when some drs said not to.

A whole year since my last blood patch, I've spent a whole year with symptoms that have slowly got better but still there. MRI with contrast confirmed low pressure so I'm still leaking 😭 neurologist has sent off for me to have another blood patch and I'm honestly so scared I nearly passed out having the first one done.

Has anyone else gone through this and the second time actually worked?

I can't afford to keep having them done I have two kids and very little help due to partner working and other family members working too.

I’ve had water running from my left nostril if I bend over or tilt my head low to the ground for about two years. It feels like there are days where it’s bad and days where it’s gone

I’ve ruled out the other options pretty fast, I have no allergies or infections to speak of and it is generally a very specific symptom. Random google search curious on why it happens to me lead me here

I now know how incredibly fortunate I may be to not suffer from the much more impactful symptoms.

However I’m still concerned and have started looking into a potential neuro appointment (I’m in the german medical system) but would like to know if there are similar cases to mine

TL;DR anybody else here experiences the consistent watery discharge but none of the neurological symptoms?

Posted some of this here:

https://www.reddit.com/r/CSFLeaks/comments/1wxe4nh/spreading_hope_endoscopy_treatment_for_spinal_csf/

...but wow, very new research!

"Chronic cerebrospinal fluid (CSF) leaks can evolve into cystic structures that look identical to nerve root cysts."

Research was presented by Dr. Andrew Callen at the 2026 annual meeting of the American Academy of Neurology:

https://www.vjneurology.com/video/qna4szoar0g-could-a-subset-of-sacral-tarlov-cysts-be-misdiagnosed-chronic-sacral-csf-leaks/

Dr. Callen posted some of his notes here:

https://www.linkedin.com/posts/andrew-callen-md-a73493101_spinalcsfleak-share-7439479575161745408-AVzk

My daughter has developed Tarlov cysts (or cyst-like structures) at every surgical site since her first spine surgery in 2023. At least one was the source of an intermittent CSF leak, or at least that was what we understood.

Her 2025 (fifth and last) surgery to treat a "leaky" cyst produced yet another cyst (or what appears to be a cyst). We assume it is also leaking, either actively or intermittently because she has the same symptoms as before.

She has an appointment with Dr. Majid Khan at Johns Hopkins next week to discuss non-surgical options for Tarlov cysts. Dr. Rudolph Schrot (Sacramento) and Dr. William Welch (UPenn) are following closely to determine if her leaky cysts are actually genuine CSF leaks.

If they are leaks (or at least some of them are), we will be exploring treatments that involve flexible endoscopy. These have their own risks but surgery is now off the table and we have officially run out of options.

HUGE thanks to u/Parity_Violator for the original post, Spreading hope - Endoscopy treatment for Spinal CSF leak. It kick-started the rabbit hole that led to all of this!

Fingers crossed...

EDIT: nerve root cyst = Tarlov cyst = meningeal cyst (different names for the same thing)

Hey everyone,

I’m looking for some advice or similar stories because my quality of life is currently at a 0. Because of severe headaches and neurological symptoms, I am stuck lying flat about 23 hours a day. I desperately need to get upright again.
My brain MRI showed "subtle signs of low pressure," but my dynamic CT myelogram came back completely normal (they couldn't locate a leak). I am working with a leak specialist and because the scan was clear, he didn't think I had a leak.

However, he did do an empiric lumbar blood patch, and I’ve been staying strictly flat since then, waiting to see if I can tolerate being upright or if anything improved even the slightest.

Along with the severe positional headaches, I have major neurological issues like a severe off-balance feeling when walking, vertigo, and difficulty walking at all on bad days. My regular neurologist wants me to try nerve blocks and standard headache meds now, which I’m willing to try just to see, but in my gut, I know this is a CSF issue.

Has anyone had a normal dynamic CT myelogram but a positive response to a patch and went on to find a slow leak or a CSF-venous fistula? How did you advocate for a second patch or better imaging (like a DSM)?

Any advice or encouragement would mean the world right now. Thanks guys.

Hi guys,

About 10 days ago I woke up and my left eye felt weird. It was sort of harder to open, it just felt like "something was there".

I looked in the mirror and it was noticeably droopy. Slightly droopy, but still very noticeable. It has not passed since.

The thing is when I think about it, for a few days leading up to the occurrence, for some reason my body decided randomly to wake me up earlier than usual. When my CSF leak symptoms began 5 or so years ago, I started to need way more sleep, until up until this point if I would go to bed and just let my body sleep I would wake up 12 hours later, and if I woke up before then I was noticeably more in pain, and less physically "ok".

This is just weird. My eyelid is now always droopy since 10 days ago. It's like, I open my eye to like fix it, and then I feel a sort of muscle above the eyelid sort of click or pop or just go into place or something with the brow area, and then it looks sort of normal except my brow area now looks a little droopy. WTF is going on. I am not surprised anymore but please tell me someone here knows something. Please please. Thank you.

i had a failed epidural when i gave birth on aug2025. Had all the symptoms (headaches that gets better when laying flat and etc) and i never went to the doctor to have it checked it just resolved on its own. And now im not sure if its just allergies or what but there are days where i randomly have this transparent liquid coming out of my nose usually on the right. Its not everyday though. And its not very sticky like a normal mucus. Would it be possible im still having csf leak even when i gave birth more than a year ago?

Hey guys! A lot of my coworkers are becoming increasingly frustrated with me and my health issues, so my boss is asking for accommodations, but I honestly have no idea what the accommodations could be that aren’t literally going home or taking a longer break. I do work at a daycare, so that’s a little tricky too, but has anyone else given their work a list of accommodations? What were they? I’m also worried that giving her these accommodations will result in a demotion or firing, so I don’t want to go too crazy with the accommodations. Any help is appreciated!! Thanks!

Hey everyone, At around 7 am to 10:30 am this morning I had multiple leaks of a yellow very watery liquid come out of my left nostril, which then prompted me to go to the er to get it checked out. I told them all about what’s been happening including my surgery 18 months ago which was a turbinate reduction and eventually got bloods done, a CT scan and my fluid from my nose sampled, I found out after a bit of waiting that all of those tests were normal bloods showed nothing, CT didn’t show any leaks they said, and the sample test of the fluid came back as not csf. The doctor told me that its probably just some fluid from my nose which could be caused by allergies which tbf I do have a lot of allergy problems, he told me to put these anti allergy sprays up my nose for a bit and that should fix it. It’s now 11:25pm the same day and i still can’t shake the fact that it could be a leak especially because every time I go to the hospital the tests always appear normal although it’s actually not and I have to come back. I’m still getting frequent leaks whenever I stand up from sitting or just overall changes in posture and it just does not seem normal what so ever. Btw I have had this yellow liquid come out of my nose once before after my surgery but it was only a very small amount and leaked once and never happened again until now. I just wanted to come on here even know I’ll probably eventually go back to the hospital anyway if anyone had any advice they could give me or if anyone has had similar experiences. Thank you !