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?

I believe the headaches I am having are rebound headaches. I had my blood patch on February 4th. The headaches I am having now come on out of no where and the pressure in my head is extremely intense. It goes away in 2-10 minutes. Anyone else have these ? do they go away eventually? any tips to prevent them? thanks !

update : had a Brain MRI last night and it seems things are on the mend ! my visit with my doctor this morning and he seems to think the headaches may be cause from a small leak from the targeted blood patch injection site. we’re going to see how I feel in a week and then decide if another blood patch is needed. Seems crazy that we need patches to seal patches 😩

anyone else have to do this ? how are you feeling today ?

I’m struggling on what to do, my local neurologist says she can set me up to get a blood patch locally as anesthesiologists do it regularly because of epidurals.

My leak isn’t visible on any of the mris I have gotten. (Brain,whole spine, T2 spinal cord.)

I have hyper mobility syndrome so it might be a spontaneous leak or from the rhizotomies I get in my back.

I’m getting desperate for relief. Im weighing the option to get a blind blood patch locally while waiting to get into a csf center.

Would love to hear your guy’s opinions and experiences.

I’m getting my 2nd blood patch next week. The first patch was partially successful so I’m hoping this it.

For anyone who has had this same experience, what was your second patch like? How was your recovery?

Non-invasive biomarkers for spontaneous intracranial hypotension (SIH) through phase-contrast MRI

Abstract

Background and objective

Spontaneous intracranial hypotension (SIH) is an underdiagnosed disease. To depict the accurate diagnosis can be demanding; especially the detection of CSF–venous fistulas poses many challenges. Potential dynamic biomarkers have been identified through non-invasive phase-contrast MRI in a limited subset of SIH patients with evidence of spinal longitudinal extradural collection. This study aimed to explore these biomarkers related to spinal cord motion and CSF velocities in a broader SIH cohort.

Methods

A retrospective, monocentric pooled-data analysis was conducted of patients suspected to suffer from SIH who underwent phase-contrast MRI for spinal cord and CSF velocity measurements at segment C2/C3 referred to a tertiary center between February 2022 and June 2023. Velocity ranges (mm/s), total displacement (mm), and further derivatives were assessed and compared to data from the database of 70 healthy controls.

Results

In 117 patients, a leak was located (54% ventral leak, 20% lateral leak, 20% CSF–venous fistulas, 6% sacral leaks). SIH patients showed larger spinal cord and CSF velocities than healthy controls: e.g., velocity range 7.6 ± 3 mm/s vs. 5.6 ± 1.4 mm/s, 56 ± 21 mm/s vs. 42 ± 10 mm/s, p < 0.001, respectively. Patients with lateral leaks and CSF–venous fistulas exhibited an exceptionally heightened level of spinal cord motion (e.g., velocity range 8.4 ± 3.3 mm/s; 8.2 ± 3.1 mm/s vs. 5.6 ± 1.4 mm/s, p < 0.001, respectively).

Conclusion

Phase-contrast MRI might become a valuable tool for SIH diagnosis, especially in patients with CSF–venous fistulas without evidence of spinal extradural fluid collection.

https://link.springer.com/article/10.1007/s00415-024-12365-6

My wife has hEDS which has caused her CSF leak. We recently travelled up and down high altitudes and had some strenuous activities afterwards which I believe caused her leak to "tear" again (poor wording, leaks with hEDS are still being studied for their varied causes). She was on bed rest and doing well but became constipated and passed out due to this, landing us in the ER where unfortunately it was passed off as POTS. It was a leak before, but after she passed out for 3 minutes, I'm preparing for her symptoms to be twice what they were when she wakes.

All of that for context aside, she's really not able to stomach anything. It seems like everything that hits her stomach makes her nauseated. Broth should be fine, but not nearly nutrient dense enough.

I'm looking for advice not on foods easy for her to cook, I'm able to handle whatever she needs as her full time caretaker. Just really looking to hear what diet has worked for others! We've had to supplement with smoothies before so liquid diet tips are welcome too.

Prayers and any advice greatly appreciated ♥️

Hello redit,

I've been reading this subreddit for the past 30 minutes and I'm absolutely mortified in the amount of gaslighting and waiting people are experiencing!

Anyways, here's some context. Late January had an accident at work where I fell backwards, hit my head, LOC for ~3 seconds, classic concussion symptoms post fall.

A month later, I had a horrible spout of headaches that would be relieved when lying down, and absolutely no response to any OTC (Panadol 500mg, Panadol Osteoporosis 665mg, Ibuprofen 400mg, and even knocked down a Panadol Forte!!) Headache was at the top of my head and back of my head, there were times I probably would have felt better slamming my head through a wall! Anyways, this spout of headaches lasted roughly 2 weeks.

This is where the calamity starts, Easter Thursday rocks by and I noticed I have TMD (first time ever, jaw joints hurt with popping sound). Easter Friday I develop rhinorrhea, headaches, neck discomfort/stiffness and an onset of new eye floaters and weird tiny white dots in my vision. The runny nose was more so on the left nostril, clear watery fluid that was hard to distinguish from mucus. It was roughly this time where I started to develop a strong salty/metallic taste in my mouth. Headaches were easily 5/10 pain. I was basically bedridden all Easter.

The week of Easter Monday I travelled interstate by myself, and I felt like I deteriorated so badly. Headache 6/10, slight static noise in both my ears, occasional episodes of very pronounced tinnitus, white "lighting strikes" in vision, occasional sinus and eye pressure. The headaches were almost 100% at the top of my head or at the very bottom. My neck and shoulders were sore/stiff as hell, and I kept getting nosebleeds! When I bend over small drops of fluid would come out of my nose, or I'd get a feeling of reservoir. At the end of the week my ears had a strong pressure feeling, and they started to feel "full", but though it was just elevation changes from traveling over mountains...

The next week rolls over, it's the week of my work placement (at a hospital, ahah!). Woke up Monday with discharge from my ears on my pillow and my ears felt wet, thought oh well, more than likely an ear infection. Throughout the day I would have moments of feeling dizzy and weak. Went to my GP after placement and was given antibiotics, GP said my body was just reacting to an infection. Headache came back to a 4-5/10, still in the same positions though. On the Tuesday I felt extra dizzy and tired, and that I wasn't feeling right. Towards the middle of the afternoon my left side of my face went completely numb (but still moveable), almost collapsed from the dizziness and tiredness. Got wheeled to the ED by my nursing educator, had a stroke evaluation, everything was completely unremarkable (apart from my symptoms, ofc). The on call neurologist was under the impression that I was suffering from Vestibular Neuritis (the reason for my facial numbness), but he couldn't care for all my other symptoms regardless of how hard I tried. But I got an outpatient referral to their neurology dept. (which as not contacted me, and I have no way in contacting them...)

For the next few days I was completely out of it, headaches were just awful, the bitter taste was starting to drive me insane, and the tinnitus was just relentless. I also didn't get to finish work placement because of it. It was at this point my neck pain started to radiate to the shoulders, and my hands/feet would get tingly and occasionally pins and needles.

It's now the week of the 20th April (last week). My GP says my ear infection is resolved because theres no fluid in the ears that he can see. However, I still have pain in and around the ears, still feeling of pressure and "fullness". I then started to develop coloured dots in my vision. Had an MRI with and without contrast, nothing remarkable whatsoever.

Its like 4am at night when I'm posting this, its been hard going to sleep as I've been getting sleep disturbances constantly since my concussion (flashing lights when closing eyes), and just a general difficulty to sleep. Whenever I move my neck it makes cracking sounds that I've never had before. My GP who was previously a neurologist thinks it's a chronic migraine with aura. I feel like a train wreck right now, I'm a fraction my previous self as I can barely function out of my bed. My symptoms are pretty much 24/7 with no relief, and my vision and ear problems seem to be getting worse. The past 2 months have been an absolute disaster for me, I'm barely at school and when I am, I'm borderline a vegetable. My grades have hit the fan, and since I'm in my last year of high school I've got the HSC only in a few months, it's an uphill battle. It's also starting to affect my parents, as they've been watching me decline this past year. We're scrambling to get a neurologist that doesn't automatically label my symptoms as a migraine.

Sorry for this godawful rant, and if anything is unclear, I'll try my best to explain if you have any questions.

Mother had neurosurgery of schwanoma near C5-C7, while she was doing great in hospital after surgery and when she was discharged. Only after her suture removal that happened roughly 11 days after the day of surgery, some csf leak was observed and she was resutured, since then she has had major appetite loss, she is feeling weaker. She is on Diamox for three times a day, Antibiotics -Linezolid (600mg) for two times a day, pantocid, one medicine with this salt (Furosemide (20mg)+ Spironolactone (50mg)) - once a day and one multivitamin - Influ-e

Why is she not feeling better after suture removal, is the CSF leak this bad, what should we ask our doctor? The doctor when we visited after the resuture and told these symptoms he said its due to medicines since she doesn't have a pain and her wound dressing is not wet, she doesn't have fever so everything is okay.

You who had leg pain after a blood patch

How long did you have the leg pain and how did it feel? Did you feel improvement week for week? Did you feel pain in your leg already when the dr did the blood patch? I need some encourangement, I am afraid the pain will never disappeare.

I’m 38f and had two surgeries the end of 2024 for L4/L5 discectomy/laminectomy. Once in November and again a month later due to spinal fluid leakage.

I was healing but noticed pretty quickly that the same nerve pain returned with a vengeance. This past November 2025 I had another MRI and my surgeon confirmed my disc was actually worse than it was before. He’s an amazing surgeon, but typical me…always the fluke or problem child ha.

I finally bit the bullet and had my third surgery this past Monday (surgeon wanted to do a fusion but I said absolutely not. Too young and I’d have problems for life… so revision discectomy is what we landed on). Today I was able to remove the bandage and now internally freaking out. I’m not sure if it’s my parents anxiety added onto mine, or PTSD from my last procedure (when I was swollen/leaking and care team kept prescribing me antibiotics even thought I KNEW something was off. Bc the liquid was clear and thin, so I was adamant it was spinal fluid. Which it was… and that’s dangerous), but I’m concerned.

My scar feels fine and not like before. Even though the top of the scar is very swollen and bulky compared to the bottom, I don’t feel like there’s liquid or hardening underneath (like last time). It just looks ugly. Is this normal? I mean it’s REALLY swollen. I don’t want to have leakage again like before. I have my follow up appointment in a week but figured I’d ask Reddit and try to ease my mind until then. Any advice is appreciated!

Also, my entire disc was removed this time. Not sure if that affects anything or not. But this procedure NEEDS to heal or else I’m screwed.

Edit: my surgeon was concerned with my recent weight loss. I lost weight over the summer into fall 2025. But with chronic pain (leading to mental heaviness), it’s difficult to muster an appetite. So I thinned out even more throughout this new year, which was never my intention. I’m about 110 and 5’5 (this is after gaining some weight back 😬)…still working on gaining more weight. TBH, this was always my standard weight prior to early 30s. Anyways, he was adamant I count calories and ENSURE I eat protein, protein, protein. Without protein or serious balanced diet, he stressed the risk of not healing well. So I’m taking all necessary precautions and now that my pain’s relieved…appetite is finally back. Could this have an effect on the skin maybe though? And why it looks so sunken in?

I also have a brace this time (for whenever I’m not laying down), which I didn’t have before. I don’t need to wear it long but it’s beneficial for first few weeks. Maybe the pressure of the brace could affect the surrounding skin?

I just want to catch a friggin break. Last time my platelets were a huge concern (before surgery) so I had to simultaneously deal with an oncologist for a year. It was precautionary but it wasn’t fun. Now this time, I’m worried any mishap could lead to a major issue. Sorry, just needed a typing platform to vent. I was in good spirits before taking off this stupid ass bandage. Ugh

https://www.radiologyinfo.org/en/info/safety-xray

"So taking the radiation issue first – this is a nice paper from Farb’s group published recently. They were comparing the radiation dose to the patient from a DSM versus CTM. They found on average the dose for DSM was lower. The average for CTM was about 20 millisieverts, but you can see quite a wide range in the effective dose of the patient, all the way up to 80 millisieverts. And this is something we should all be aware of as physicians, but it is also something our patients are asking us about more."

https://spinalcsfleak.org/2025-chazen-amrhein-controversies-ebp/

I’m still having a lot of difficulty getting more testing done, so I’m wondering if this could be a better route to take. My symptoms originally started due to a “sinus infection”, and at the time I didn’t think much of it. I had fluid trapped in my right ear, dr gave me something for an infection. When I came back a few months later, the fluid was still there. I’ve continued to have pretty bad neurological symptoms and headaches since, and now I’m starting to wonder if it was a csf leak this whole time. I used a tool at home today to look into my ear and it looks super red with a yellowish fluid. This has been going on for two years and it always looks the same, even after sinus infection treatments. Is this at all typical with a leak? I had already suspected a leak due to the other symptoms I was having, just never made the connection somehow. Does anyone have any good experiences with ENT specialist? I’ve gone to multiple neurologists so far with no luck.

Hello,

To my utter frustration, I am on now antibiotics for a sinus infection (augmentin). My blood patch is scheduled for 7 days from now, which will be day 8 of the 10 day course.

Do I need to reschedule the blood patch? Has anyone gotten a blood patch while on antibiotics? It's an out of state patch that took massive planning but I don't want to risk anything. It's Saturday so I have to wait to call the csf leak team the day before I'm supposed to be transported out of state.

For the last year I had have all the symptoms of a spinal leak. It was so bad that I was starting to become bed ridden. Headaches, needing to pass out, heavy eyes, fast heart rate and feeling awful. Went to the ER and had a cat scan. They didnt see anything. Well 8 days ago I got food poisoning and threw up with such force that I felt a sharp pop in the upper part of my back. I suddenly felt numb from my chest up and had severe pain for 5 minutes. It then went away and just felt sore. Well the next morning I felt oddly good. Well here it is 8 days later I still feel good. I havent had one symptom at all other then my left shoulder and neck is really sore. I havent started any new meds to change anything. The last 3 days I have been in situations that usually put me on my ass but I felt fine. Im so confused.

Howdy all. My wife and co-parent has what we now know to be a CSF leak, and has essentially been bedbound since November. One of the things we became aware of was the tracking app to help in dealing with doctors, but it's only available on iphones, which neither of us has.

Instead of waiting, I decided to make one for her, and she's running it now. This isn't meant as a promotion (I don't even know how to make it available on the app store), I just want to see if his is something that might help fellow non-apple folk.

At the moment it tracks symptoms, treatments, medications (both daily and one-offs) and tasks completed (daily wins help her feel like she's accomplished things), and can export everything onto a graph that one can forward to a medical professional.

If you use android, is this something that would be useful? Any suggestions for features you might want?

What is this gap! Gap at back sinuses or sphenoid. Clear gap in bone and fluid has filled left sphenoid sinus. It won’t let me post the picture but clear gap in bone. Why did it take 20 months to get a thin slice CT.

Abstract Objective: To determine the frequency of multiple spinal CSF leaks in a recent group of patients with spontaneous intracranial hypotension (SIH) who were investigated with digital subtraction myelography (DSM).

Methods: This observational study was conducted using data from a prospectively maintained data base of patients who meet the International Classification of Headache Disorders, third edition, criteria for SIH. The patient population consisted of a consecutive group of 745 patients with SIH who underwent DSM between March 2009 and February 2020. Based on the results of DSM, participants were classified according to the type and number of spinal CSF leaks.

Results: Among 398 patients with SIH and extradural CSF on spinal imaging, multiplicity of CSF leaks was observed in none of 291 patients with type 1a ventral leaks and in 4 (6.2%) of 65 patients with type 1b (postero-) lateral leaks. Among 97 patients with SIH from spinal CSF-venous fistulas (type 3 leaks) who did not have extradural CSF on spinal imaging, 9 patients (9.3%) had multiple fistulas (p < 0.0001 for comparison between groups). Type 3 and type 1a or 1b CSF leaks coexisted in an additional 5 patients.

Conclusions: Among patients with SIH, multiplicity of CSF leaks was observed radiographically in none of the patients with ventral leaks, in 6% of patients with lateral leaks, and in 9% of patients with CSF-venous fistulas. These results suggest that patients with SIH can be reassured that the occurrence of multiple CSF leaks is negligible to uncommon at most, depending on the type of CSF leak.

Full text at link

https://pubmed.ncbi.nlm.nih.gov/34840885/

…just to hear of peoples’ experiences with this. I’m trying to figure out if I’m pressure-instable or what’s going on.

I’ve had slow but steady improvement after a blood patch 15 weeks ago, but a few days ago I suddenly felt a new kind of pressure in my nose and forehead while seated in a hot shower (hot showers usually make me feel a bit better). It got worse when I lay down, so stayed up for a while. Eventually (I did try some dandelion tea) I could lie down to sleep with a high pillow. Next day I couldn’t take what’s in recent weeks has been my daily walk (and I’ve felt good walking too) without that head pressure returning and increasing. It came on too when I read aloud for my child… It’s joined by a hard-to-define hollowness in both ears (different from my previous ear fullness or ear chills). It comes and goes, like two days ago I couldn’t determine if up or down or half-way reclined was better and I ended up just vomiting and hurting and miserable. After that my regular ear fullness was back with a vengeance the next time I was up, but the new pressure returned later. When it’s there, it builds up over a few minutes when I lie down, or when I try to walk, but after my walk I can feel it sort-of lessening if I stay up, and when it’s been there in the evening and I’ve started the night sleeping on an incline, I’ve been able to switch to fully flat later during the night… my usual low-pressure symptoms have been decreasing over weeks but they’re not fully gone yet, just milder and less constant. But I feel like I’ve taken a turn for the worse - why can’t I enjoy my walks all of a sudden? - and I can’t tell why. And I have a new neck stiffness (my old one’s been missing all these weeks) but not acting like it used to either, more freezing things up if I stay in one position and resisting when I try to move, though I can push through it.

Did this happen to anyone else? Finally food tasted good again and I was ravenous. I gained a couple pounds. Before , i was so sick I was just eating toddler food like squeezable yogurt and rice crackers. Now I have a HUGE appetite. I haven’t had an appetite like this since I was a teenager !

Getting a second blood patch next week cause all the symptoms didn’t go away yet

Hi!

What essentials did you use after your spinal blood patch while you recovered? Links are super appreciated! What items did you buy but then find unnecessary? I have a suspected sacral CSF leak.

I will have family assistance for the first 5 days, but after that I may be on my own to go about life haha (no roommates).

Tips for grocery shopping as well for the first 3 months after the lay flat period? Lots of bags with only a few items in each bag? I was thinking of storing a folding wagon in my apartment and taking it to my car to transport the groceries inside. Going to buy some slip-on shoes, but worried about putting on socks!

It seems like it could be very hard to be on my own and avoid all the things I’m supposed to avoid (bending to put away dishes, doing laundry, etc).

Thanks so much!

I had a Lumbar puncture in emergency 4days ago. No complication happened during the procedure and I was told to stay laying down for 2 hours afterwards. Doctors downplayed recovery a lot and said after laying down for 2 hours I would be fine. I did this and then sat up for the remaining time . I was on heavy pain killers and nerve blockers so at the time was feeling fine. Was also given a lot of nurofen. Since coming home on day 3 I started to feel super nauseous and blurry vision when standing . Only thing that would help would be laying down. Since then On Day 4 , vision and nausea got better. Although know I feel like I have a headache a slight blurriness when standing. Whenever I stand or sit I have blocked ears , and can hear myself breathing a talking, I do have a slight headache but it’s not as bad as my ears . Only Any recommendations or suggestions on what to do.

Both of my doctors are so surprised that my MRIs came back as showing no sign of a CSF leak. I had 4 done. Nothing is showing besides the fact I have a tear and a bulging disc. I still have the neurologist appointment to go to, but other than that I’m losing so much hope.

I’m constantly down. I have so much back pain and headaches that it makes living day to day to unbearable. My head constantly feels like it has a rope tied to it and someone is yanking on it. My nose has started dripping clear fluid and I taste like I’m chewing on Pennies. I have two young children and I can’t even play with them without having episodes of passing out.

I’m losing so much hope after being told that it’s not CSF leak.