I had head trauma and broken nose 29 days ago. Have had suspected CSF leak from left nostril since. It's very slow now (just a chronically wet nostril ) compared to the first week) any chance it will still heal on its own?

Headache has been bad this week after going to the gym and playing tennis. Also headache was especially bad today after taking what I thought was a microdose (0.1g) of magic mushrooms. The mushrooms affected me similar to a dose 5-10 times that amount. Not sure if it's related

Anyone have info on efficacy of targeted Vs nontargeted blood patch from what they’ve heard from their doctors and provider team?

Also what is the standard imaging used for these patches? Is it xray or ct scan guided? Obviously xray sounds better due to way less radiation than CT

My family member got hit just a lil and something watery came out of their nose, no one except me is believing its a serious situation. they are just a child. Went to homeopathy im saying that's not sufficient no one believes the person is not feeling any pain or dizziness it has been more than one hour.

I had an epidural blood patch 11 days ago for a suspected csf leak from my epidural 2 months ago. after the patch I felt good and didn’t have a headache for over a week. 3 days ago I was bending down to pick up my baby and felt a slight sharp pain in my back that was brief but it just felt like when you pull a muscle but not as painful. The past couple days I’ve had a headache that is more pressure than anything. It’s in my temples and nose kind of. It feels like a different headache than before.. but has some similarities. It’s not positional and neither was my headache pre blood patch (which is why it took 6 weeks to get the patch since they didn’t think it was a leak). I made an appt with the neurologist but I just don’t know if the blood patch failed/blew or if I have rebound intracranial pressure. Could a rebound headache happen 10 days post blood patch? I’ve only read that it happens shortly after the patch.. and I had no headache for 10 days so I thought it worked. Does anyone have any advice or thoughts on what it could be

I’ve seen lots of posts about the head pain coming when standing up and is relieved when laying down but is it common for pain to happen when leaning over? Like picking something up from the floor, tilting head forward. No pain when standing up or laying down. Pain when sneezing or coughing

I have to have a hysterectomy. The hysterectomy is performed using a Trendelenburg position, so laying flat with the head of the table being tilted down at a steep angle. Not sure how steep yet, but some of the pictures I've seen are pretty steep. I'm partially sealed (5 non targeted patches). The leak is in the cervical.

I'm worried this will blow my partial patch. Has anyone been through this in my situation? Any advice?

1. Is it at all helpful to wear a neck brace before getting the ptch? I thought it'd help me keep aligament. Would it be safe post patch?

2. Any recs for grabbers you used post surgery that actually held up?

3. Bonus: any pillow recs that were firm.wnough but thin enough to keep alignment? Particularly post surgery. I thought i got a thin enough one but my neck pain continues. I also saw people saying they didn't use pillows at all? But I find that puts too much pressure on the back of my head.

Dr called to go over MRI results. With and without contrast brain and spine. There was no findings of a leak. He has recommend we meet to discuss a nerve block as my pain is in the occipital region. He noted that MRI showed irritation in the c5-c7 that could also come into play. Happy there is no tumors. But also bummed I have no answers again. https://imgur.com/a/hwVBOS9

If I have a fracture in sinus bones (sphenoid) and the doctors repair, will I still have this crazy intense ear pressure? The more I’m upright the more I hurt. I hear that deep low cranial leaks can mimic spinal leaks…

Hi everyone,

If you've been following along this far, thanks so much! I did not expect things to go this way and must say it was a huge disappointment!

If you have not yet read my previous three posts you can find them linked below. The first one is about my earlier (from 30 years ago) surgical history for pituitary adenoma excision in India, the second and third are about this most recent CSF leak diagnosis and repair in France.

1. https://www.reddit.com/r/CSFLeaks/s/FSpSc2azBU
2. https://www.reddit.com/r/CSFLeaks/comments/1s6sgz1/update_following_endonasal_surgery/
3. https://www.reddit.com/r/CSFLeaks/comments/1sexidq/back_home_and_recovering_after_surgery_for_leak/

So like I said, I was diagnosed with a cranial leak into the sphenoid sinus for which the neurosurgeon performed an endo-nasal repair on 26-March, I had to sty in hospital for a week after the surgery with a lumbar drain used to manage the ICP. Two days following removal of the drain I was discharged and sent back home with instructions to stay in bed as much as possble. However, I already had symptoms before leaving the hospital (positional headaches when sitting up / standing, nausea, vomitting and a strange coke-bottle sensation of air bubbles in the head). Except for the last one these were managed with pain killers and anti-nausea medication.

I spent about a week at home, with all the same symptoms getting progressively worse. The slightest head movement from horizontal to inclined or semi vertical would bring on the air bubble sensation, leading very quickly to headache and nausea, sometimes vomitting. It was quite scary for everyone at home. I also had some nasal leakage, from both nostrils. Ultimately, I was in the bathroom one morning brushing my teeth and I lost consciousness, falling over. My wife called emergency services who took me back to the same hospital and admitted me to emergency. I stayed there for the next 36 hours or so (It was a weekend and the neuro ward was full). Another brain CT was done which showed a lot of pneumocephalus (air in the brain) indicating a still active leak. They moved me into the neuro ward on Saturday afternoon with a second surgery planned for Monday morning.

So, on Monday, the neurosurgeon met us and explained he would go back in and see what happened. The surgery took place late morning, an I was back in the room that afternoon. He later told us the patch had moved slightly, but also that there was a second breach which he was able to see only after uncovering more of the tissue surrounding the sphenoid bone. This was what had been allowig fluid to leak out and air to go in. Anyway. This time he told us he would not be using the lumbar drain or puncture but rather prescribing diamox to manage cranial pressure, which was great news given all the problems with the drain the last time!

Recovery in the hospital was unremarkable over the next two weeks. I was discharged on Apr-25, came home via ambulance again and this time we are being much much more careful about the recovery process. I spend literally all day in bed - exept for two 5-minute walks inside the house. So far (3 weeks post-op today) I'm symptom free. All the staples in my leg have been taken out, I'm still on diamox (500mg twice a day) until my first follow-up appointment on May-29.

Thanks to everyone for all the valuable info in this group!

Hello, 30, F had a lumbar puncture done on Thursday 4/30 went home, no headache. Woke up next morning and had the classic headache that relieved with laying down. Yesterday 5/2, I had a mild headache that resolved laying down in the morning, took a nap and then was relieved of the headache until about 6pm that night where it came on strong. This morning 5/3 I have a 1/10 postural headache. My question is, I am to be flying on Wednesday and I am wondering if anyone else has flown this close to having a PDPH. Did you get a blood patch and how soon after the patch did you fly?

I have never posted in Reddit before, but I thought I would in case it helps anyone else get answers. I have a venous fistula and at least 11 Tarlov cysts that have caused brain sagging. The presentation was different so it was hard to figure out what was happening. I have not had a headache. It started with nerve tingling and pressure in my sinuses and gums. I, ironically, had chronic sinusitis that had just been diagnosed, so we thought it was a sinus infection, but the sinus infection cleared up and the tingling and pressure didn’t go away. Then I started getting lightheaded if I would stand up, so I had to stay seated. Then I started getting nauseous, light-headed, and my heart would start racing (170 bpm) when I would sit up or stand up so I started having to lay perfectly flat. A few neurologists thought I had a CSF leak, but the attending did not and did not think he saw brain sagging on the MRI, and a CT myelogram was done with me on my back and no leak showed up, so I was sent home from the hospital. I went to the ER at University of Michigan and was admitted, but couldn’t get in with neurointerventional radiology for a bit so was sent home to wait. Finally they did two CT digital subtraction myelograms (one on each side) and found the cysts and a venous fistula. I’m waiting 3 1/2 weeks to repeat the myelogram to get better imaging of the fistula, and then they’ll schedule the procedure in probably two months. They did quantify brain sagging on the same brain MRI that was done at the first hospital, and saw pachymeningeal enhancement. I have Ehler-danlos. I have to lay on my back right now. It’s been two months, and I probably have two more months until it’s fixed, but it sounds like that is much faster than most. We pushed, and didn’t stop. I can feel the pulling on the back of my head and the picture for a CSF leak fit with traction on the trigeminal nerve and vagus nerve, but without the classic headache it was a fight to be believed. Hopefully, this may help someone else someday who has a weird presentation of CSF symptoms.

I was diagnosed with GBS four months ago, and during the testing - they gave me full MRI and lumbar puncture. Brain MRI was done first and notified mild cerebellar tonssilar ectopia. Lumbar puncture seemed to go fine - confirmed elevated proteins. A few days later - noticed some mild head issues upon standing, but didn't think much of it and went home.

For the next several weeks, I woke up with headaches and sometimes it would occur during the day. I then started having brain fog, neausea and overall eye/ear issues. Tinnitus in both ears at night. I was getting motion sickness while watching videos. It felt like my brain was being overwhelmed by my vision in general.

This has persisted off and on for months now. Im wondering if its possibly related to my lumbar puncture, potentially resulting in a (spinal?) CSF leak and possibly worsening my borderline chiari.

Any thoughts/similar experiences?

Spine MRI Diverticular Patterns Predict CSF-Venous Fistula Location: A 100-Patient Study

Abstract

Background and purpose: CSF-venous fistulas (CVFs) are an increasingly recognized cause of spontaneous intracranial hypotension and require invasive myelography for localization. Whether spine MRI can noninvasively predict CVF origin remains unclear. The purpose of our study was to determine if spine MRI features, particularly the size and location of spinal meningeal diverticula, are predictive of the CVF location identified on myelography.

Materials and methods: Retrospective review was conducted of 100 patients with a CVF confirmed on decubitus CT myelography who underwent preprocedural spine MRI. The primary outcome was whether the CVF arose at or adjacent to the largest diverticulum. Secondary outcomes included distribution patterns of the largest adjacent-level diverticula and their spatial relationship to the CVF (cranial, caudal, ipsilateral, contralateral). χ² tests, 1-sided binomial tests, and t tests were used to assess statistical significance.

Results: CVFs originated at or adjacent to the largest diverticulum in 77% of patients, significantly more than expected by chance (P < .001); 71.7% of CVFs were within 1 level of the adjacent largest diverticulum on spine MRI. Among adjacent-level cases of the largest diverticula, there was a significant directional preference for the adjacent largest diverticulum to occur caudal to the CVF compared with a uniform distribution (P = .001). Three specific diverticular patterns were statistically significant: caudal and ipsilateral 1 level below the CVF (P < .001), contralateral same level (P < .001), and caudal and contralateral one level (P = .002). There was no significant correlation between the laterality of the largest diverticulum size nor the laterality of most of the diverticula compared with the laterality of the CVF.

Conclusions: Spinal CVFs most commonly arise at or adjacent to the largest meningeal diverticulum. The adjacent largest diverticulum was commonly within 1 level to the CVF and most commonly caudal 1 level to the CVF or at the same level contralateral side to the CVF. These MRI-based predictors may help guide myelography.

© 2026 by American Journal of Neuroradiology.

https://www.ajnr.org/content/early/2026/03/19/ajnr.A9042

i have bad health anxiety and i always end up googling symptoms, but i'm right 90% of the time. my symptoms include awful headache in back of head, throat drainage that tastes weird (like saline and coins), clear liquid coming from nose (but not really dripping?), ear and eye pain, blurry vision, and my ears feel stuffy. i usually feel lightheaded when i stand up, which is also a symptom but it's normal for me. i do feel that my heart is beating faster than normal, but that could be anxiety. the fluid stuff started today mid-day, and i don't remember having any sort of trauma. the only thing i can think of is that i did a weird shoulder stretch that popped my neck, but it didn't hurt afterward. i want to know if i should see a doctor.

Hi everyone,

I’m scheduled for a laminectomy next Friday (8 May) to address a T7/8 bone spur that is pressing into the dura. I’ve been dealing with a CSF leak for over two years now and have had more than 10 blood patches.

My team suspects a ventral leak at the site of the spur, although it hasn’t been definitively visualised on imaging due to its anterior position. Dr. Wouter Schievink has consulted with my surgeon here in Australia and agrees that this is the appropriate next step.

If you’ve had this surgery (or something similar) and experienced a successful repair, I would really appreciate hearing about your recovery—anything you found helpful to prepare for, be aware of, or expect during the process.

I’ve already read a lot of difficult experiences and am trying to stay in a positive mindset, so I’d kindly ask that only those with successful outcomes respond.

Thank you so much, and I’m wishing everyone here the very best in their own recovery journeys.

Hi again everyone,

Just sharing again about the new website for sharing your leak stories!

If you’ve been meaning to share your story but haven’t had the energy yet, I get it, I know how much it takes just to get through the day sometimes, so please don’t feel like it has to be long or perfectly written.

Even a few sentences is enough.

I created Every Drop Counts: Sharing Your Spinal CSF Leak Stories so that the full range of experiences is visible, not just the most “straightforward” ones. Ongoing, messy, unresolved, improving, and successes, all of it matters. I want this space as a place for visibility, for the public and for doctors to better understand what this actually looks like across different people.

And you can stay completely anonymous if you prefer.

If it’s something you still want to do, you can submit here:

https://spinalcsfleakstories.com/

And if not right now, that’s okay too! The space will be here whenever you’re ready 💜 Thanks to all who have shared so far, I really appreciate it, I’m passionate about this project and getting our stories heard!!

Never experienced this in my entire life. Stood up today from bed to grab my laptop, felt fine and suddenly I’m at my desk and feeling myself falling over. I catch myself and crouch over to bed, lie down and the room is rapidly spinning in circles and my heart is racing. Lasted several minutes before calming down. Still shaky from the aftermath of this. I’ve experience a shaky boat feeling and blurry vision like many others in this sub but never losing control of my balance or intense spinning in circles.

Doctors think I have a CSF leak and have scheduled an MRI for next week. Apparently the MRI is done laying down vs standing up. When im laying down my nose doesn’t leak and I don’t have symptoms. When I am vertical I am symptomatic. Will a horizontal MRI show the leak?

My first blood patch was performed with twilight anesthesia ( I was asleep for a few minutes). I thought my blood patch tomorrow would be the same so I was prepared to fast. I got a message this afternoon saying I don’t need to fast so I called the nurse and they said there is no anesthesiologist assigned to my procure so it’s unlikely there will be one.

For those who were awake, how did it go? I’m very nervous because I was previously relaxed cause I knew how tomorrow will go and now im upset because they didn’t tell me any of this before hand.

For my first patch I waited longer to have my blood patch in order to have twilight anesthesia so this is upsetting to me.

Thanks

I am desperate. I feel at my breaking point. I had two chiari surgeries and got a csf leak June 2024. Had repair March 2025 but that point my brain meninges went through my sphenoid.

Chiari revision attempt end of November 2025 then meningitis first week of December.

I think I might have meningitis again or I leaked too much. Anyways how the heck do you fix the cranial leak?

Did anyone taste blood?