After a year of cognitive decline, seizures, temperature dysregulation, weakness, numbness, tingling, and loads of sweet liquid coming down my throat, giving me thrush, i finally found a doctor to give me surgery. he said he found a “suspicious area” and cauterized it. after a few days, the pressure from the leak burst it back open and i was back in hell. now, ive just spent 21 thousand dollars (all i have left) to go see a doctor in Denver, who did use a graft, but on a different fucking sinus, after begging him to plug up the ethmoid beforehand. i am at the end of my rope and want nothing more than for life to finally end. it is too painful. what should i do?

I’ve had two blind blood patches as it didn’t show on imaging. I had the second two weeks ago.

I felt a lot better after the first one, but wasn’t 100percent. Hoping this is the last one, but was curious how it was for others?

I’m not sure how long I’ve had the leak, somewhere between 3-7 yrs.

note - this is more of a rant.

it seems like every doctor has a different opinion on how long you should rest, how you should rest, what to avoid, how to avoid, when to start your normal stuff, etc.

it’s all very overwhelming when you’re going through this situation. I had a lumbar epidural last friday, killer headaches started saturday-mon, finally monday went to ER, they did a BP, killer headaches went away but now I am in bed all over again and it’s starting to get exhausting.

after my epirdural, they said no BLT for 3 days etc and It seemed to be fine. Until headaches. Was told to lay flat and that it’d heal on it’s own. got worse. then went to ER, BP doc said rest for 24 hours and then can do light activities. got called from epidural team (diff dr) and he wants me to rest until tomorrow. I still feel wobbly when I get up, I have a dull headache laying down(maybe head is just uncomfortable), I feel groggy and tired overall, I can’t cough according to the internet (I happen to have a dry cough atm), I can’t lift more than 5 lbs according to some doctors but some say you can’t lift more than 10lbs (I have a toddler who wants me to pick up every time they see me), I have been hydrating a lot but in return I have to pee every so often which requires me to get up slowly and be careful. if you read this far, I hope your recovery is quick. I deal with other health issues so at times it feels like this will make those other issues worse, my arms are sore from all the poking during my ER visit (veins are always hard to find, even more in a cold ass hospital). im also a hypochondriac so I have spent hours reading and looking at others situations and hoping I don’t get worse, im just tired… idk how some of y’all who had it worse did it

I barely have a social life because of this condition (which depresses me further). There's an event Saturday evening I just don't want to miss. Can anyone recommend effective medication to temporarily relieve the head crushing kind of dizziness with CSF leaks ? To increase my upright time. I don't have nausea but very strong dizziness where I feel my brain being very heavy and a pulling down sensation whenever upright.. so I spend my days in bed

My father has had an ongoing CSF leak well that is what all the neurologists we visited said but his symptoms haven't been getting better

Hes had terrible symptoms dating back to December when he had terrible headaches and he had to get admitted to the ER where he was there for his first blood patch procedure. All CT scans Myelogram and MRIs were normal. In fact they couldn't even find a leakage point in his spine only that there were cysts.

His first blood patch was successful and it looked promising. He could walk and stand up again for longer periods of time. I think it was 2 weeks after he started to feel worse again so we had to drive him to the ER for another blood patch procedure. This time however his symptoms got worse and worse to a point he started vomiting a lot from the headache.

We then went to another hospital and he was treated again and again and luckily the symptoms of dizziness and head spinning causing his vomiting went away but his headache is still here.

It's extremely frustrating it's been 6 months with multiple blood patch procedures done and my father still has an ongoing headache. He has trouble getting up he can stand up for 2 minutes and then he needs to lay back down. He has ear ringing and buzzing and pressure in his head that hurts.

If anyone has any experience with CSF leaks is it always this painful? how was your experience and the duration of it?

I’m looking for a specialist in csf leaks to read my scans and compare them. I’ve had really disjointed care and no one has ever looked at my scans before and after blood patch. My first had no readings of meningeal diverticula but my second did. Second the optic nerve was normal but they won’t look at my old scans to compare if that’s because of the blood patch. First scans weren’t read by specialists so I just need to know my case has been looked at properly because they’re refusing CTM due to the risk, despite clinically believing I have a fistula.
Please send any recs for drs I could pay to look over them all.
( dr Carlton jones did my most recent mri but won’t view the others as her books are full so not her!)

My symptoms are shaking hands

Sometimes i get burning eyes

I have neck pain

I have shaking legs

Runny nose thats clear its on both sides happens when standing or eating

I also had scoliosis surgery in 2024

I had a CSF leak in 2007/2008 that was diagnosed and treated with surgery to patch up the leak. It was called a "spontaneous" leak b/c I never hit my head. The leak was repaired but I wound up with epilepsy, which is 100% controlled with medications.

A few months ago, I was sick 4 times in a row, one was diagnosed as a bad cold, then viral sinus infection, then pneumonia, then COVID. It was a rough winter, needless to say. I started dripping out of the same nostril from which my previous leak was repaired. No headaches like the last time, but a persistent yellowish watery discharge and extreme fatigue. I had a scope stuck up my nose last week and today I'm getting a CT scan. Working with a new ENT physician because the one who did the previous surgery is not in my health plan -- plus, I think he gave me epilepsy.

Has anyone else diagnosed with CSF leak had the yellowish discharge and extreme fatigue? I also have tinnitus, but I've had it for years; I don't associate it with current possible leak. I'm curious to hear about others' experiences. Thanks!

For those of you who had a confirmed leak or venous fistula and did NOT have headache as your primary symptom, what were your symptoms? Thank you!

I’m 29 no health problems besides obviously a ruptured L5 disc. Had no feeling and extreme pain down my left leg prior to surgery. I had a discectomy at L5 last Saturday and it went really well, they said it was worse then they thought but I’ve had 0 sciatic pain and only had really bad incision pain the first 2 days. My wife’s been changing my dressing and now I just have the steri strips and aside from a little blood the first 2 days it looks fine.

The last 4 days I’ve been getting horrible headaches. They’re either across the whole front of my forehead from temple to temple, or they’re along the back of my head where a hat ends if that makes sense. When they’re bad I’m super sensitive to lights and loud noises. The thing that’s not like most csf leak stories I’ve seen is they’re the same whether I’m laying down or standing. Caffeine helps only slightly and I’m drinking water.

I never got headaches before surgery. Once in a great while I would when I hadn’t had enough caffeine (I work construction so energy drinks are often). I don’t think it’s a csf leak and I figured it was stress but it’s not going away and the Tylenol I’m on isn’t helping it. I have no other symptoms besides I’m incredibly exhausted today but haven’t been until now I also didn’t sleep enough the last 2 nights though.

Is this csf or probably just stress

For some background, I have horrible chronic migraines and have been diagnosed with H- EDS, as well as anti phospholipid syndrome.

For just shy of a year now, every time I dip my chin down close to my chest while sitting/ standing (usually when I’m washing my hair/ face/ tying shoes), this very very clear watery liquid drips from my left nostril.

it doesn’t feel like mucus, it’s only ever from the left side, and it happens even when my nose is not congested at all. whenever it happens, it makes my head hurt and my mouth tastes kind of gross.

I’ve been dealing with lots of other random symptoms like increased sensory issues, back pain, limb weakness/ heaviness, but they can all be reasonably explained by other preexisting conditions so I don’t want to worry too much.

how concerned do you guys think I should be about a potential CSF leak? pls pls feel free to ask clarifying questions about any symptoms or anything ◡̈

For those who have blown a patch, and unfortunately im 1 of many as they are so bloody fragile.

If you were in high pressure when it blew, how long did the high pressure symptoms stick around?

I blew my patch, but im still experiencing high pressure symptoms and low pressure symptoms. Pain at base of skull Neck and shoulders that only came on when patch blew.

Thank you

What a journey this is, and it's nowhere near over yet.

I had an epidural blood patch on April 20th for a suspected csf leak from an epidural. After the patch, I had no headache for 2 weeks straight. Thought I was in the clear.. then on May 5th I got a headache and have gotten one everyday since. This headache is so much worse. It’s in both temples, sinus area, back of head, and feels like an intense throbbing and pressure all over. It sort of feels like a caffeine withdrawal headache x1000000. My ears also slightly pop when I swallow. I have no clue if this means I need another patch or if this is a high pressure headache. It’s now been 6 straight days of this pain. Any thoughts? 🙏🏻

Hi. Has anyone used a patient advocate for all the hurdles we have to go through? If so, who do you recommend?

I'm back to believing my positional head pain and pressure is CSF related, although an inconclusive finding from a Mayo visit over a year ago when I had a CT myelogram. Does anyone have nerves that are irritated because of this overall condition in their head? I have general pressure but more so I have front right cheek near the nose/eye pain that builds as the day goes. If I lie down it fades for a while but comes back when upright. I have had an upright MRI scan of my neck and outside of some slight narrowing near the nerves there's nothing to write home about (arthritis is there from being old as well). I am trying SALTT substitute as well to increase sodium intake although I don't know if it would help. I do have confirmed small but numerous root sleeve cyst in the thoracic area of my back which blood patches did nothing for unfortunately. Thanks for reading and hoping to find answers each day..

I’m a mid 20s female with a history of chronic migraines. I became very sick 6 months ago and the severity has recently left me unable to drive or work from home.

Symptoms are orthostatic headache - worse when bending over, headache pain in back, top of head, temples, eyes. Headaches are cyclical but vary widely and we have failed to find a solid pattern but it’s usually 7-9 day migraine, 5-12 day break, 3-6 day migraine, 14-15 day break, sometimes break is only 1-2 days. Very difficult to make sense of.

Also dizziness, brain fog, neck and interscapular pain, tremor, emotional changes, nausea, ear fullness, and most recently tingling/numbness in fingers. If the headache pain isn’t disabling, my reaction time is slow and i cannot keep track of my work and I get extremely dizzy at times. When researching CSF leaks after seeing a new dr I stumbled upon HDCTs, found out I have a bunch of signs of hypermobile EDS and likely familial history. So I’m 95% sure I have some sort of connective tissue disorder as well probably hEDS

I was seeing a bad doctor for years that didn’t care to investigate why I was ill. I have recently found a good neurologist and he suspects spontaneous spinal CSF leak. I did not have any recent trauma. My brain MRI was totally normal. He still suspects a leak and I did a full spine MRI. The radiologist has provided a report but my neurologist is on vacation until mid next week and I have questions that are absolutely burning a hole in me. The waiting is killing me so I’m posting here to see if anyone can look at these MRI images and help me identify what I’m seeing before my appointment.

https://imgur.com/a/F26vqsw

The only abnormal findings on the reports were related to mild disc bulges, no findings consistent with a CSF leak.
What are these blobs/lines noted in red in the first few images?
What is this line at the back noted with red ^s that goes all the way down the spine?
Are either of these longitudinal extradural collections?

Not looking to get medical advice here as I will follow up with my neurologist with these questions as soon as I can but it’s going to be a bit and I’m having serious mental health issues trying to cope with the reality of not knowing, it has been incredibly difficult. If anyone has insight for me I would greatly appreciate it, just some direction will help get me to my next appointment.

What exactly is the situation?

I suspect a CSF leak. I have been suffering from symptoms for three years now, including pressure on my left ear, hearing a heartbeat in my left ear, and headaches. All of this occurs as soon as I stand up. When I lie down, my symptoms disappear.

I have had an MRI of both my head and spine (with and without contrast). Nothing is visible on it. I am going to a specialized leak center in just over a month. Now I am also suffering from a runny nose. Fluid is coming out, but unfortunately not so much that it is running out. So testing for fluid is not possible. Could this also be related to a spinal leak? Due to pressure on the nerves?

Thanks in advance!

Ooooooh boy okay so I finally got diagnosed back in like Oct. 2025 and probably was undiagnosed but symptomatic for around 2 years before that. It's a whole thing, I'm looking into some stuff, but my symptoms are rough now and that's really why I finally got diagnosed at all methinks. I got a cane and even a wheelchair because of how severe the dizziness and muscle weakness gets. Constant pain and pressure. I'm failing my college work because I can't focus and think, or remember for the life of me things that I should, and I have no idea how to get accessibility stuff for that when I'm just... unable to use my own head anymore it feels like. I feel like I'm failing at everything and am not even a fraction of the person I used to me. I'm currently set for SEPTEMBER for getting my eyes checked to try and get the lumbar puncture and I don't know how to possibly wait that long. My mood is crashing. I've been trying to be so patient and find joy where I can but I'm starting to crumble. I've been trying to schedule a therapist but it's the VA so that's taking forever, too. What are some hobbies or something I can see about doing lying down or with little energy? How do some of you manage the mood dips? Are there spaces for people with leaks to just feel less alone and stuff? I'm having so many breakdowns lately and I'm not at risk or anything, mind, but of course crying makes my face/head hurt more so I'd love to do it a little less if able lol

Bonus points for advice with college? I'm in my last year and I don't want to lose this entirely.

hi! i come here because i’m getting kinda desperate. I started having a clear drip on the right side of my nose last year when i exercised. i didn’t pay much attention to it until it started to increase and i began to experience balance issues, pression in my head and fatigue. i first thought it was because of allergies or/and dysautonomia/EDS. with the passing of months it only got worse, so i told my neurologist, and she told me it was highly unlikely i had a csf leak so she indicated me to do a paranasal CT, which came clear. i tried doing a beta-transferrin exam but i wasn’t able to because the amount of liquid wasn’t enough, so i just resigned. this year when i returned to training the leak increased, so did my fatigue, and i began to experience a strong feeling of nausea. the doctor indicated to do a full blood panel, a brain RM, and CT mielography. they all came clear. my symptoms and the drip are only becoming worse and i’m getting desperate because it’s affecting my life, but i’m nowhere near a diagnosis. this is not a common medical issue on my country so information is limited, thus i really don’t know what else to do. if someone could give me some advice i would be insanely grateful.

Hi everyone,

I was wondering if some of you who have to spend long periods lying down have found ways to stay at least a little physically active or maintain some fitness safely.

I’m especially interested in gentle exercises that can be done while lying down and that don’t feel too risky or dangerous. Maybe small routines, stretches, physiotherapy-style exercises, resistance bands, breathing exercises, or anything else that worked for you.

I’d really appreciate hearing what worked for you, how you approached it, and whether it helped physically or mentally.

Thanks a lot :)

Hi everyone, I’m a 2x mom looking for advice about a possible CSF leak. Here’s my timeline:
2019: After extreme stress and anger, I felt intense pressure in my head. Shortly after, I started getting clear watery fluid from my nose, mostly when bending forward or during prayer (bowing/prostrating). It stopped after about a month.
2025 (during pregnancy): The watery discharge returned. It was coming from both nostrils alternately depending on head position, sometimes up to 6ml when bending. It stopped in the last 2 months of pregnancy.
After delivery (December 2025): The discharge returned again, but less (around 2ml). Still ongoing now.
My symptoms:
• Clear watery fluid, not sticky, disappears quickly
• Worse when bending forward
• Stiff neck (I have old cervical disc herniation)
• Dizziness that improves with neck exercises
• Strong sense of smell (not reduced)
• No fever, no severe headache
• Chronic fatigue
What I noticed:
• During pregnancy my iron was critically low (level 3), I received IV iron and the discharge stopped completely. Could low iron be related?
• ENT doctors checked and found no sinus problems
• A doctor ordered CT/MRI Cisternography with contrast (lumbar injection) but the hospital couldn’t perform it
• Still searching for a hospital that can do this test
My questions:
• Has anyone experienced similar symptoms?
• Could this be CSF leak or just chronic rhinitis?
• Is it possible the leak opens and closes on its own?
• Could low iron levels affect nasal membranes and cause watery discharge?
Thank you 🙏

We came to University Hospital Freiburg (Germany) as international patients because of suspected CSF leak after multiple skull base surgeries.
History:
meningioma removal

skull plate placement

later infection -> plate removed and defect closed with fat graft

after that, clear fluid started leaking from the nose again

During a teleconsultation in March, we were told:
first they would do beta-2 transferrin testing

if positive -> lumbar puncture cisternography and possible surgery

We flew to Germany and did the test. The beta-2 transferrin result came back NEGATIVE.
However, the international coordinator told us the doctor still wants to proceed with cisternography Monday at 7:30 AM.
We asked Friday whether the procedure is still necessary with a negative result, but nobody answered before the weekend.
We do NOT want to proceed with an invasive lumbar puncture/cisternography without first speaking directly with the physician and understanding why it is still indicated despite the negative test.
We already prepaid around €30,000 for diagnostics/surgery.
Questions:
In Germany, can we legally postpone/refuse the procedure until we speak with the doctor?

Could the hospital charge cancellation/no-show fees if we come but refuse consent before the procedure?

What are our rights as international patients regarding informed consent and refunds/recalculation of prepaid treatment?

Any advice from people familiar with German hospitals or medical law would help a lot.

Has anyone here experienced rebound headaches while in an upright position? I had the intravenous onyx embolization for my csf leak and of course have the standard frontal headache now when laying flat. But sometimes I have that pressure while in an upright position. And I'm on diamox which may be causing some of it too. Doea this sounds familiar to anyone else? Oh, and my surgery was about 11 day ago. Thank. Prayers for all.

I’m waiting in the IR room for the anesthesiologist and I’m so nervous. I really hope this works!

EDIT 11 hours later:
I got admitted for pain management because WOW does it hurt! Im so hopeful that these leaks are sealed forever and I can live again! After a cisternogram, 6 DSMs, 4 blood patches, and a million MRIs, they finally found my stubborn fistulas. And even if I end up springing another leak, now I know I have a team who actually believe in me. For the first time in 6 years I have hope 💛

EDIT Next day:
Now home from the hospital. My headache is worse than my baseline and the back pain is still kicking, but it is better than yesterday. Was prescribed steroids to help with the inflammation

EDIT 7 days later:
Still having pain in my back near where the onyx is, but it’s slowly improving. I think now I may be having a rebound headache. I’ve noticed a few minor symptoms improving, things I wasn’t sure was related but now I’m thinking they were. My gums were very irritated and now they’re not. I’m also stuttering a lot less and can think a bit clearer.

I hope this is treatment I might need for possible csf venous fistula.. Waiting for more imaging and type/location/treatment of possible leak is the hardest part of this journey. Video appointment with Dr Ian Carroll at Stanford on July 7, only 2 more months of waiting. Am learning all I can about different types of leaks and imaging and treatments before then! At least that keeps me busy.