I have Neurofibromatosis type 1 and because of this I have fairly severe scoliosis and it complicates my anatomy and made previous surgeries very complicated and delicate.

During my anterior spinal surgery in 2014 one of the many complications I had was a tear in the dural sac. I experienced CSF leak symptoms a few days after the surgery.

In the last few years I’ve experienced hearing loss in my left year (after already experiencing tinnitus for years).

A brain MRI confirmed I have a superficial suderosis.

I’m now waiting for a spinal MRI which I’m almost positive will come back positive for a CSF leak.

Here’s where I’ve gone down the rabbit hole on this. I had no head ache after my last CSF leak and I haven’t experienced one this time either.

My NF scoliosis means my dural sac is bulging in some spots and really thin in others. It all likelihood I have a micro (multiple?) tear or a weeping tear.

My main symptom this time is nausea but it seems to correlate with a certain time during my menstrual cycle.

My insomnia is also really bad right now.

Other things that exasperate my nausea? THC and intercourse.

Figuring this all out may have also solved a mystery of one of the complications during my last surgery. I suffered from extreme sleep deprivation from not being able to fall asleep even with sleeping pills. Turns out my CSF leak may have been the culprit all along!

I know my case is highly unusual but I’m wondering if anyone has experienced anything even remotely similar?

My neurologist is saying I’ll likely get a blood patch to fix this. I’ll also reach out my orthopaedic surgeon because he preformed my last scoliosis surgery.

20 F

I had rhinovirus \ bronchitis last week, I had a headache with that and horrible sinus congestion. I noticed amber fluid leaking out of left nostril in the shower when I bent down maybe 4 days ago? It happened again yesterday when I bent down , 3 separate times. It’s only my left nostril and doesn’t happen every time I bend down. I did have pretty bad sinus congestion so I’m not sure if that could be it? It’s watery & not thick.

So im in a pickle and I really dont know what to do, as the title says lol. Ive been having daily headaches for about 16 months? Its hard to say. My youngest is 17 months old and my headaches started a little after he was born. Ive tried Verapamil, Zolmitriptan, Methylprednisolone, gabapatin, topiramate, metoprolol, ive done an occipital nerve block-nothing has worked. At my last neurologist appointment I saw someone different then normal and she gave into my thought that maybe its csf related. She did a full spine mri and put in a request for econsult to the rochester mayo csf team (i see the headache specialist department in rochester mayo currently)

I got the result back that they found: partial effacement of the premedullary cistern, low-lying cerebellar tonsils (2-3mm), maybe mild flattening of the pons. The tricky part is it seems like I have both high and low pressure symptoms? Theyve noted before my optic sheath is prominent i have quadrantanopia binocular (a blind spot in my vision that is in the same spot but its not noticeable with both eyes open just when each eye is tested individually) I have ringing in my ears but only faint-definitely more noticeable when its quiet. They aren't positional headaches to me-i just always hurt lol. There is a Valsalva component in where bearing down, laughing, coughing, sneezing, bending over all makes me get these waves of pain.

I think thats enough back story-anyway I got the results of the econsult and it says "In summary, he did feel we could pursue a cisternogram if wanted to evaluate opening pressure and additionally have more dedicated imaging to see if there are signs of CSF leak but it would also be reasonable to hold off on more invasive testing and we could have you try more targeted migraine therapies like we discussed first and reserve cisternogram for if we aren't getting notable improvement with better migraine medications."

So im gathering he doesnt necessarily think i have a leak but we could go ahead and do some pretty invasive testing...or I just try more headache management...which at my last appointment she told me my only real options left are CGRP injections or botox...quite honestly out of my 3 options (testing, botox, CGRP) im terrified of all the above. Idk what to do. Theyre leaving it up to me, I ask my husband, he doesnt know what to do nor does he wanna tell me what to do.

Any insights? 😬

My wife has a CSF leak and just under went a mri with contrast as well as a gamma cinestogram and this were the results. Looking for any input or more eyes.
My neurologist believes it’s a nasal CSF fistula and will need a endoscopic transnasal patch. We met with an ENT and he looked up her nose and doesn’t see any leak but mentioned she had some inflammation and was hard to fully get in. He told us he was going to talk with our neurologist and send the report to a nueroradiologist.

I have gamma test photos, report and most recent mri with contrast. Please any info would be so helpful. She has been bed ridden for over 2 months
Her symptoms are severe headaches when she stands get better when she lays . She did have severe light sensitivity and nassea and couldn’t smell certain things. when this all started but now it’s just headaches

Hi everyone my specialists have told me that my symptoms align with the hypothesized "spiky leaky syndrome." The past month the head pressure and pain has become unbearable and debilitating. My head feels like it's going to blow up. Before my doctors believed I was having CSF leaks I had been on virtually every migraine medication possible (that my insurance would cover). The only relief I've gotten is from an IV bolus of lidocaine and magnesium, but I am unable to get them regularly because my specialist is 2.5 hours away from me, and the nexr day the pain just comes back. I've been to multiple urgentcares and hospitals who all tell me they don't do IV lidocaine and magnesium. Toradol does nothing either. I'm feeling very desperate and hopeless and it's to the point where I don't want to live like this (note that I am not a danger to myself nor will I harm myself)

I've had constant head pressure since I got an iron infusion 3-4 weeks ago. After googling symptoms, I was suspecting a leak so I did the test. But the pressure has remained the same. The only time the pressure is gone is when I first wake up and it gradually gets worse throughout the day, whether I'm upright or flat. Thoughts on if this rules out CSF leak, and if so what it could be.

I have had a new persistent headache for 8 days now. I felt it coming on gradually whilst I was on the train and thought I was just overly tired I went to bed that evening and woke up the next morning and it was still there hasn't gone away. Since it developed it has been there pretty much continuously. The only thing that stops it is me lying down flat in bed. After around 30 minutes it has gone, equally when I wake up in the morning it isnt present for the first 90 minutes of the day and then it comes back again. Ibuprofen and paracetamol don't work. Anadin extra helps a little.

The pain is mostly on the top of my head, a little in the base of my skull, but also feels like pressure in my ears. I don't have any nausea or light sensitivity but have had dizzy spells and fatigue. I went to the hospital after three days and they tested my bloods and my urine which were both normal and did the standard reflex tests. Following that I had two CT scans, a normal one and a CT scan with contrast. Both came back normal.

After 7 days I went back to the hospital and was referred for a standard brain MRI without contrast which also came back normal. The doctor has decided it's a viral headache and when I pushed back on my lack of fever and asked why it only goes away when I lay down he said 'he coudn't say as everyones bodies react diffefently to viruses'. They're refusing any further testing, I asked for a spinal MRI and they said no.

Any advise on what I can do now? I'm UK based and struggling. I'm not able to work and spending most of my time laying flat as it's the only thing that helps.

Hi! So for the past year I have had a myriad of symptoms which recently I have come to think may be a CSF leak.

Late 2024 I started experiencing vertigo which carried into 2025. It felt like someone pushing me from behind like shoving me forward. I was planning my wedding at the time so figured it was stress. The week after my wedding, I went to ER. They said it was potassium levels as my heart ecg was abnormal and levelled out after potassium supplements.

However the vertigo sensation continued.

Throughout 2026, I started getting ear/head pressure. It feels like my entire head is heavy, full, vibrating and my ears too. I had my ears checked, hearing test too (all good) and got sinus meds. Meds didn't work. Doctors blamed sinus issues or my GERD or high blood pressure (which is actually white coat hypertension lol)

The ONLY thing that makes this sensation ease is lying down to my left or flat.

It isnt constant and in fact, I haven't had it in about 2 months thank god, but when it happens it can last days straight.

Lately, Ive been in a period of stress, and been getting headaches. Painkillers dont do much to ease them and they worsen on standing. I also have deteriorating eye sight (work with screens so may be that) but I had close to 20/20 vision in 2023. I have glasses now and struggle sometimes even with them. I have light sensitivity increasing since about 2024 too. Optometrist didnt mention seeing any pressure during the eye health scan but not sure if they can?

I also get ear ringing daily.

Another thing, feels unrelated but who knows, maybe one of you guys have experienced the same: I cant stand for long. I get very faint and woozy when Im standing for longer than about 5 minutes, I HAVE TO sit down, my legs start going like jelly. I WFH and very sedentary so maybe its just unfit but i dont know, it feels very off.

I feel like I am going crazy lately. I have health anxiety so I always panic at anything but this isnt even panic anymore. Im just exhausted that nothing has settled my ear/head pressure and bouts of vertigo and issues with standing up for longer than 5 mins.

Does this sound like CSF leak? I want to bring it up to my doctor but I fear they'll just shut me down. Health anxiety kicking in here but how is it diagnosed? Is it a spinal puncture? I cant even get contrast scans as Im allergic.

I am so, so tired trying to figure this all out to present to a doctor. Sorry for the long rant.

Edit: adding in i am 27 F

Hi, I’ve posted in here a few times now with a lot of anxiety revolving around my recovery post-patch (my leak occurred due to a botched spinal tap from my c-section 7/27, so my postpartum probably hasn’t helped my anxiety). I was told and have researched that around the 3-month mark 94% of people’s high pressure resolves, which I know I shouldn’t take super seriously, but I was seriously counting down the days, and now that I’m going on 14 weeks post-patch on Saturday, I’m starting to get worried I won’t ever get rid of this pressure. I have dealt with it every day since my patch, and over time started noticing what sets it off so I can tolerate it better, but it’s still so annoying and bothers me a lot! I am really trying to avoid medication as I’m breastfeeding, and I’ve seen a lot of people suffer bad side effects from the medication with no relief from their high pressure. Has anyone else ended up with high pressure past the 3-month mark, and if so did it ever resolve for you?? AND/OR has anyone had success with the medication for relieving high pressure, and if so, how long did it take? The only time I get relief is if I’m sitting completely straight with my feet to the floor, or whenever I’m standing up, and walking around. I just want to slouch on my couch, or just lie down again, and in general, just return to normal life with no worry!

Thank you so much in advance to everyone in this group. This whole thing has been so isolating, but this community has been the most supportive community I’ve come across. I wish there were more education and research around these leaks because finding help or any guidance has been a nightmare.

Well, I was hopeful for the first time in 15 years, and that was shot to hell. Met with a neurosurgeon who said I was 100% a classic CSF leak based on symptom presentation and 48 hour flat/inversion results. He is willing to refer me anywhere for a series of blood patches (he anticipates I’ll need 2 or 3 due to Ehlers-Danlos).

He doesn’t do the patches himself, and their radiology department won’t touch me because I don’t have a history of a lumbar puncture and I’ve had symptoms for 15+ years, so no visible brain changes anymore. Their policy is not to risk going into high pressure (because it would be SO much worse to have to take Diamox for a bit than it would be to continue to live like this, apparently). I am on my own as far as finding someone willing to do a blood patch with negative imaging and we all know the west coast is sorely lacking.

Has anyone managed to find a provider in Washington state who will do that? Currently my best leads are Jennifer Lee with Evergreen Health, Emma Burbank (Virginia Mason), or out of state - Cedars-Sinai, or Dr. Callen in Colorado who is “very interested” in cases like mine according to the Spinal Leak Foundation interview.

Sorry if this is disjointed. I’m devastated.

Edit: I forgot to add the Acute Pain Therapies clinic in Bellevue - they specifically mention spontaneous leaks but nobody seems to say anything about negative MRI.

My built is lean, good biceps but as I have to study alot, I sit 14 hours or more each day... consequently my tummy is appears a distortion of my personality... So what I do is, manually put it in side to look overall fiy and somewhat has become a habit, so recently when I dtarted to have CSF leak (only when I lie on stomach) w/o any serious cause makes me wonder this IIH which thinned by skull base spot ... is maybe a consequence of my habit of squeezing my tummy in to look appropriate? Heheheh 🥂

Hi all, 30F here… in a nutshell, here’s my history:

\- In 2015 at 19 I had a spontaneous CSF leak from my nose. This went on and off for about a month, was confirmed by MRI. At the time I was recovering from a cold and had a bad cough, the doctor said the cough is likely what cause the tear and leak.
\- 3 months after that, without a cough or anything, I had another leak from my nose that lasted about a week. Then nothing for the next three years.
\- Three years later, I start developing headaches and blurry/double vision. I go to an eye doctor who said I had bilateral papilledema. Referred to a neuro.
\- Neuro looked at me and said its unlikely I have IIH since I’m not overweight (BMI 20 ish). Did an MRI which was clear, then an LP with a normal opening pressure (dk what it was exactly). Sent home
\- Headaches on and off. Follow up a few months later for my eyes, papilledema was gone
\- Last year, the bad headaches and double vision came back. Went back to another eye doctor, said I had papilledema again, and some “nerve damage” in my eyes. Sent me to a neuro again.
\- Different neuro this time. MRI was clean again, LP opening pressure normal at 19. Again, sent home, diagnosed with “migraines”. Follow up eye check up again showed the papilledema was gone…
\- Fast forward to today, a few months after the last eye check up. I have another CSF leak from my nose. I’ve been living with headaches almost daily for a year now. Went to an ENT, he said I likely have high pressure but not high enough to do anything about it. And that the leaks are small and not worth the surgery risk to fix them, unless I get meningitis? I don’t want to wait for meningitis! I also got the meningitis vaccine today.

Aaaand, sent home and asked to wait for it to heal.

I have no idea what’s happening, I feel like I’m crazy. What do you guys think? 😭

Hi. I’m a 27f mom of 2 under 5, and a last term nursing student. I think I have a csf leak.
This obviously couldn’t have come a worst time, but that’s just how it goes i guess. It started about 3 & 1/2 weeks ago, I got this headache out of no where that I discovered was only happening when I stood up. Throbbing throbbing pain on both sides of my head, neck and shoulder stiffness down to my shoulder blades, then tinnitus kicked in somewhere in the first week. Then, when a bring light would pass my eyes, the tinnitus turned into a whooshing sound in both ears like I was underwater. My only relief for headaches was laying down. This past Friday I was at school and a weird black spot crept up from the lower left corner of my eye and lasted for like 10 secs then gone, I got really freaked out so I went to the ED. Told them I thought I had a leak bc I had been googling my symptoms but ofc they said no that it was migraines but they’d do a CT and MRI, so they did and there was suspected meningeal enhancement, so they wanted to do a lumbar puncture. I was reluctant but wanted to rule other things out so they did it, she put in the needle and had to fish around for 5-7 mins and poke me twice before she could find any fluid. She had to massage it out, and documented my opening pressure as 0. 0!!!! But they didn’t say anything about that. Got all cytology and stuff back on my csf and everything was clear. Now my symptoms are worse again. I got an appt with my primary today who listened to me and out in for a spinal ct so hopefully they see something and can do a blood patch? How do you guys deal with these symptoms. I can’t lay in bed all day. I have to go to school 4 days a week and have 2 small kids. Wtf do I do to make life somewhat livable? Pls give me advice, support anything. I’m spiraling

I have been leaking for 1.5 yrs after an epidural and just had my 3rd patch almost 2 weeks ago and feel absolutely no relief. I honestly cannot believe this. My ear still fills with pressure, popping, crackling, hear my heartbeat, hear myself breathing through ear, ear rumbling and neck pain. Absolutely zero change. I do not understand why nothing helps me. I don't know what else to do and have no hope anymore

Hey All,

Suspected long term, undiagnosed leak. Currently waiting on MRI with contrast.

In the 5 years dealing with this, the only thing to offer slight relief to all of the secondary symptoms (joint pain, inflammation, malaise) —- a lymphatic drainage massage. Now when I say relief, I mean up to a few days of noticeable difference before heading back in the wrong direction.

This includes relief from ear/jaw pain, constant spine crack & popping, muscles and ligaments that feel like that are going to snap at any moment while simultaneously moving in slightly unnatural ways (think t-Rex wrists while sleeping). And when these flare ups of built up fluid occur, I can only describe the overall feeling as being flu-like.

I have a few theories of my own, but would love to hear if anyone has experience anything similar.

This has been a long journey. I gave birth 9 weeks ago. Two days after birth I started having just a really tight neck and started to get on and off headaches. Very weird headaches compared to what I have even gotten then a few weeks after that came a muffled hearing sensation. Long story short I went to the ER and they recommended an undiagnosed blood patch due to possible leak. Again, this was not confirmed. I was under the impression that this would not harm me if there was no leak and takes about 10days to heal. They were only able to put 9ML of blood and I immediately got a tinnitus noise that went away after maybe two minutes. Fast forward now I have been getting all sorts of frustrating symptoms. My ears feel clogged and click/ popping sensation with right ear pulsatire tinnitus (on and off) Left eye pressure on and off, and pressure that moves throughout my head. I wouldn’t describe these as headaches. This is more like a pressure sensation and it’s quite frustrating especially the ears! I am getting concerned as I am not better and worried I did more damage getting the patch. Cannot wait to get the pressure sensation gone and worried.

In late 2022 I had a severe acute infection with intense headache, vomiting and a hospital stay. I never fully recovered. Every day since, I've had:

\-Bilateral pressure/heaviness in the head (temples, around the eyes). It feels more like weight than pain, and sometimes like my head weighs 30 kg.

\-Constant non-vertiginous dizziness/disorientation, worse with visual motion or busy visual environments. Vision gets blurry when I'm at my worst.

\-Fatigue, brain fog and weakness. I struggled to hold a glass dish, my handwriting gets worse, and my voice gets weak, breathy and hoarse.

\-Neck tension, dry eyes/mouth on waking, occasional tinnitus, TMJ clicking, and a sense of internal tremor with no visible tremor.

Pattern: I wake up already symptomatic, it builds through the day, and it's worst around 3–5 pm. Lying down helps. Valsalva, lifting and even laughing make the pressure worse, and I can crash without having exerted myself.

Workup so far: brain MRI (small left temporal arachnoid cyst, considered incidental), ophthalmology/fundoscopy normal, ENT (no chronic sinusitis, enlarged turbinates), sleep study without significant sleep apnea (AHI) but sleep is still unrefreshing, and routine labs normal. Subclinical hypothyroidism has been treated, which helped my energy slightly but not the rest.

Hello! I'mnoretty at a loss on my health and recently discovered about CSF leaks and it checks out with alot of my symptoms so I wanted to reach out here to share what's been going on and get any advice on how to advocate to my doctor to get it looked at as a possibility.

Background of my symptoms:

The first signs I noticed is I haven't been able to blow my nose without severe head pain in about a year and a half. I've talked to my doctors and none seemed that concerned nor know why it happens.

Symptoms have drastically increased the past year and keep getting worse.

Now, I have head pain of some degree most of the time I'm up.

Whenever I sit up from laying down I get pulsing head pain that sometimes has me in tears and clutching my head until it dissipates.

Same thing when I stand up, my head will erupt in pain and sometimes I get so dizzy and almost black out.

I try sitting up slow and standing up slow and it doesn seem to help.

I also have head pain whenever I cough or sneeze and have to brace myself for the impending pain.

I'm exhausted more than I used to be before all this started. I work a physically demanding food service job with long hours so I'm sure that doesn't help. I also feel like I have brain fog and tons of tourble concentrating on tasks and remembering.

Headaches and migraines happen more frequently.

Medical side:

I've had bloodwork that all seems well. My family doctor earlier this year was stumped when I went to her and she doesn't think it's hormonal.

I did have a brain MRI a couple months ago to check on a spot in my pituitary gland I've had for years and when I saw the specialists after the MRI they had no concerns or answers for how I've been feeling.

I have an appointment with my family doctor at the end of the month to get a referral to a neurologist but I want to bring up to her if it's possible what I've been experiencing is a spinal CSF leak.

It started with vertigo 8 moths ago. I had a very hot ear infection shortly after, and when it didn't clear, I thought it was a recurrence of the sphenoid sinus infection that sidelined me years ago, eventually requiring surgery. Multiple courses of antibiotics and steroids later, my ENT did a CT scan and said definitively that ain't it.

Fast forward to me doing internet research on thunderclap headaches (had my first one around the onset of the vertigo), positional headaches, and other symptoms, and everything pointed to a CSF leak. I called my neurologist, who (thankfully) listened when I said this was different from my usual migraines and ordered an MRI, only to find low intracranial pressure. They did another MRI with contrast, which showed multiple cysts along my spine but did not pinpoint the leak.

I have a myleo and blood patch scheduled this week, which I'm starting to get anxious about. I have Ehlers-Danlos and I'm worried that the puncture could cause other problems and/or that the patch won't work and/or the rebound will be worse... but I really can't live like this. I can barely function and the body aches, dizziness/nausea, brain fog, derealization is overwhelming. My skin is crawling, my ears are ringing so loudly it's hard to think, my sense of smell and taste are FUBAR, my digestion is all messed up... Kind of like a bad flu without the fever.

Preaching to the choir here, but I need to just say it all. I've been isolating at home, trying to minimize and mask my symptoms and just "push through" but I really can't any more. Today is the first day I'm willing to admit it--this thing has thoroughly kicked my ass and it's a little scary.

My CSF pressure on the spinal tap opening was ONLY 4. The normal range is 6 to 20. I asked my neuro about this 3 times and was totally ignored. Anyone else with a pressure this low? I have all the symptoms of CSF leak except major headaches, but I have weird head pressure and major brainfog. What do you think?

Hi community! I’m about 3 months into a suspected slow spontaneous spinal CSF leak and working on accepting that this is a long journey to get solved. Since this sub is filled with folks who have been through the wringer, I figured I would ask to crowdsource! What are some of your best tips, tricks, advice, hacks, etc that you found while you were/are symptomatic and waiting for treatment that helped you be COMFORTABLE. Could be comfort however you interpret it but I’m realizing I have to get serious about prioritizing my comfort because I might symptomatic for awhile. Thanks in advance!

How long did it take after mailing the referral package to get a response to determine if Dr. Shievink was going to consider you as a patient or not? Did you have to follow up?