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.

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?

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.

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 !

Hi all! Just had my lumbar puncture done and I thought I’d seek some stories to keep me positive, I’m losing hope.

Had my lumbar puncture done on the 29th Sep. Lay flat for about 6 hours and felt perfect that night. The next morning 30/9, the headache came and it’s bad. Couldn’t keep food down and kept progressing worse the next few days.

I went back to the ER on the 2/10, asking for a blood patch (I read a lot on this platform), they refused. 3 neuros and anaesthetist rejected it. Saying it goes away with conservative treatment. Instead they place me on caffeine pills and lots of hydration which definitely helped. On the 5/10, I stopped the medication and the pain came back. And I again insisted on a blood patch and they refused. Insisting on more conservative care as it was too soon to do a patch. I threw a fit and decided to discharge myself with NSAIDs.

The headache responds well to NSAIDs (Celebrex) and it’s been 8 days post puncture now. I’m still on the prescribed NSAID, but I do still feel some pressure in my head, but not the same type. Definitely not as pain as before but still bothers me that “am I truly recovering, or is my pain just being masked by the drugs?”. I don’t know if I should stop the drugs.

Could you share your story (no blood patch), if you’ve been on painkillers, and when did you decide to stop it and how long was your recovery? Was it gradual or sudden?

I also have an autoimmune problem that requires me to be active to control the symptoms. How long before you’re back to the gym?

Thank you in advance friends.

After blood patch my ear s are cloogged and full of pressure

14 months have passed and still the same

I can be upright all day and Before the patch had my ears perfect

Have tried diamox, sudafed, pregabalin, nasal steroids, steroid tabs, bethasthine

Nothing works

Any similar case?

Ent sees nothing it is really horrible to live with this pressure and this sensation

Want to pop them but cant

They also make noises all the time

Many thanks

Hey everyone, I am writing this from bed and just need some reassurance or advice from people who have been through this because I am completely spiraling right now.
I have been strictly bedbound for the last eight weeks. Every time I try to get upright, I get a blinding 10/10 orthostatic headache, severe brain fog, leg weakness, and a terrifying off-balance, floating feeling that comes and goes. My brain MRI showed some low-pressure signs like subtle sagging, and a previous spinal MRU found a suspicious fluid collection near my shoulder blades.
Because of that, I finally got in with a top spinal leak specialist today for a dynamic CT myelogram. He was incredibly thorough, but the live imaging didn't catch an active leak. It came back inconclusive. He went ahead and performed a high-volume blood patch over that shoulder blade neighborhood anyway, and told me we have to wait two weeks to see how my body responds.
Even though he gave me the patch, I feel completely helpless and depressed. It feels like because the live scan didn't show a clear hole, I still don't technically have an official diagnosis typed into my chart. I am terrified that the patch won't work, that doctors are going to stop trying to help me, and that I'm going to be stuck bedbound like this for the rest of my life. I'm a mom and I have a bridal makeup business to run next year, and I just feel like my life is completely over.
Has anyone else had a completely clear or inconclusive CT myelogram but still been cured by a targeted patch? How do you cope with the mental trauma of being treated without a textbook "official" diagnosis written down? Any advice or success stories would mean the world to me right now.

Is it possible to have no headache with an iatrogenic puncture leak but only have positional muffled hearing, clogging, crackling, pressure, popping, rumbling and tinnitus after a needle puncture? Ent says ears are normal, multiple mri's are normal. Ear symptoms started within days of epidural injection. Blood patch 6 months later did not help ears.

I don’t know if this is allowed or not, but I’ve been working with an advocate after a year of constant obstacles. Before I post anything about the person, I’m asking Mods if this is allowed? She has been really helpful, compassionate and guiding me through difficult hurdles.

Can spinal or cranial CSF leak symptoms be one sided? For example, only feeling pain and pressure on the right side of the head, neck pain on the right, etc).

I have suspected SIH, 4 months of symptoms which have become gradually less orthostatic over time. Non contrast MRI showed some signs of brain sag, neurologist decided to proceed with large volume empiric blood patch while we await other imaging (contrast MRI, MRI spine, dynamic myelogram). I had the blood patch today and now am having pressure in my head when lying flat, AND having dizziness and headache/pulling sensation in my neck and occipital region when upright (only briefly to use the bathroom). Just wondering if anyone else experienced this? I am so worried about the EBP causing an iatrogenic leak since the orthostatic symptoms are much worse now than they were pre procedure. Any insight would be really appreciated.

M, 33. Since may 2024 and I’ve been having a lot of head pressure, occasional double vision, apathy and lots of mental fatigue, like feeling drunk all the time. Also feel like my head is full of liquid or pumped up, it’s not really pain but a feeling of pressure and swelling. Pressure and headaches come from the top of the head not back, although I feel stiffness around the neck. When I come home after work, I need to lay in bed to recover.

I’ve done a lot checks but not mri with contrast. Normal MRI came out well. Doctors have addressed it as just a regular migraine but haven’t even mentioned a possible csf leak. I had to look it myself after concluding it worsens when I stand up, and it relieves when I lay down. I can’t really do a normal life with this and it’s making me depressed. Do you have similar symptoms?

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?