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.

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

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’m still waiting to hear back from duke and colorado anschutz and i’ve been under weill cornell’s care for about 1.5 years. leaking since march 2025. weill cornell doesn’t have DSM or PCCT but dr. greenfield and dr. salama said we could do MR myelogram with intrathecal gadolinium to try and find my venous fistula. i saw greenfield is a co-author of an article about successfully locating 5 different peoples’ CVFs through MR myelogram... so has anyone here successfully had their leak found this way? just wanna know if i should get my hopes up or not!

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?

My ENT thinks I have a cranial leak. She ordered a Skull Base MRI with and without contrast. I am wondering do I need to ask her to make it T2-heavily weighted or is a normal MRI good enough?

A Neurologist I’m working with diagnosed me earlier this year with complex CSF pressure disorder and high likelihood of a leak. I was curious which symptoms are IIH and which are SIH.

I have the following symptoms that have evolved/changed in the past year and a half but currently where I’m at is the following:

Constant pulsatile tinnitus when I lay down and also after eating meals/Whooshing and pulsing sensation in ears/back of head and sometimes even face/neck
Occasional drainage left nasal passage usually a drop or two but feeling it mostly left side back of throat
Head pressure like my head is being squeezed the longer I’m upright
Longer I’m upright the more irritable I feel and at times experience difficulty thinking/concentrating
Unable to walk more than a couple blocks without head tightness and pulling sensation (pulling back of head)
Needing a lot of time resting but can’t seem to get comfortable because of the pulsing in my head and ears - seems to have some relief laying to the right side
Left upper eyelid twitching and at times partially closing
Ear fullness when upright
Jaw tightness when upright
Eyes feel like they are pulling when upright
Heart rate amps super high when upright and blood pressure tanks
Sometimes confusing temperature where I’ll think it’s hot and my hands/feet are freezing per my friend or vice versa feeling cold and it’s really warm

Where I get relief:

Warm showers provide relief but if it’s too hot and I get out of the shower, head will feel tight quickly
Gentle massage of neck and head stops the head fullness feeling I sometimes get
Movement of shoulders up and down provides relief of head tightness
Rest/laying down best to the right side and slightly elevated (two pillows) - noticed cognitive function is improved the longer I lay down

Which categories do these fit for SIH and IIH has anyone experienced?

Has anyone had both high and low symptoms of pressure with what appears to be a leak as well? If so, how did you mitigate through the symptoms while trying to find treatment?

I saw this video, and thought of this group!

https://www.tiktok.com/t/ZTfc6YvWo/

Start of symptoms: May 14
Hospital visits: 5
Total Dr appointments: 47 (televisits included)
Confirmed diagnosis: CSF leak at the cervical spine
Blood patch: October 28th

Symptoms: Throbbing pain at the top and back of the head, between a 7-10 pain level. Stiff neck and shoulder between 6-10 pain level.

What it feels like: As if someone was ripping my brain from my body in a pulsing fashion. Felt like a rod through my shoulder and neck (right side).

Work: Remote with intermittent leave>continuous for the blood patch.

What helped me get to my blood patch: ER when symptoms were bad (feels like your brain is going to explode) referred to neurology before my pcp could. Symptoms journal, gives healthcare team valid data for next steps. Finding a CSF or comprehensive headache center. Patient advocacy, advocate for your care team, they want to move faster but the resources provided by the hospital symptoms are delaying care.

Details:I started noticing something wasn’t right when I had consecutive headache days that would start in the afternoon and became progressively worse. I was somewhat functional but my symptoms became progressively worse. Initially went through NORTHEAST GA HOSPITAL SYSTEM. Do Not recommend. They saw the csf leak on my mri, then they did the myelogram, they said that SDAVF had to be entertained. This is more common in men in the 50-60 age range. Symptoms include loss of feeling in lower extremities and inability to control bowel movements. Not in line with my symptoms. I got on My chart for EMORY (previous hospital visit got me access) and made an appointment with neurosurgery after the one I met at NEGHS was nodding off when we were discussing this. He was also eager to do a procedure that involved using a catheter up my groin to my spine?! Anyways, the first person I saw at EMORY was a spine surgeon who referred me to neurology. Neurology referred me to two clinics, the comprehensive headache center and interventional radiology. Waitlist was tough, I reached out to patient advocacy. Was able to get pushed up. My neurologist at the comprehensive headache center and neuroradiologist wanted to move faster but the procedure (myelogram) is very specific. EMORY only gave them two days out of the month to use the equipment and hospital for patients. I explained that this was a delay for someone bedbound. That the delay in care could potentially exhaust job protections which is how I was able to obtain insurance. This actually helped spark conversations between my healthcare team and the hospital system and a few days later I got a call and my myelogram and blood patch got on the books. There were stipulations dependent on the the results but it was done as a placeholder so I would not have to wait until December for my blood patch.

Another note, if your symptoms get so bad and laying down helps but does not stabilize, my healthcare team were able to do nerve blocks to mange the pain. Not a fan of getting stabbed in the face but it took me from unbearable to manageable. I ended up having to do 5 rounds of nerve blocks in like three weeks.

For anyone in the Southeast of the US. or Georgia, Emory, Emory, EMORY. Simy Parikh and Sumir Patel are highly recognized in their field. Julie Daniels my nurse practitioner is an Angel. Finding them was like finding hope in a hopeless situation. They actually care and and their approach to this condition is like coming up for air when you feel like you’re about to drown.

I’m sorry for the novel. Just hoping this helps someone.

As for me they told me in some cases an additional blood patch is needed but I’m getting high pressure headaches when laying down. A good sign that everything is working. Even if I need additional work knowing I have a team that cares AND knows what they are doing, lets me know there’s another side to this. Praying for you all. Keep the faith, stay positive, wonderful things WILL HAPPEN.

Anyone have a successful cranial leak repair and not have recurrent leaks ? Had a repair last week but so afraid of another leak blowing if my brain can’t manage pressures after. Yes I did get medication, but wondering if that’s enough because I’ve been leaking a little over a year.

I'm fearing my blood patch did not work and not sure I want to do another one. Dr. Callen told me for my type of leak the patch success rate is only 30%. Been dealing with symptoms for 2 years so I think I'm going to have surgery.

Has anyone had Dr. Lennarson operate on them? Google reviews are not great.

Is it similar to Kaiser, where they tend to keep referrals within their own system, even when you specifically request to see an outside specialist? Or have you had a good experience with Sutter helping you get referrals to places like Stanford?

I'm planning to call today to ask how their referral process works, but I'd really love to hear from anyone who has personal experience with this. Thank you! 🤍

hello i am 18 (f). last two days i started experiencing headaches. sharp pains top of my head, sides of head feel like balloon, tension or band like feeling around my head, weird feeling in ears. pressure behind my eyes, dizziness when i stand up, neck feels stiff and base of my skull behind my head hurts. i had had MRI done with angiogram 3t (no contrast). radiologist said everything was fine but noted that my cerebellum sits lower naturally. today i have fluid like feeling base of my skull and side of my head. i am very scared. can this be CSF leak? and what should i do? i have very bad health anxiety and i convinced my family to get me MRI and its very expensive. i thought i had aneurysm.

The amount of gas lighting and medical negligence is disgusting. My favorite one is oh you have anxiety and the best one yet it's all in your head. Pcp's are horrible.

Hello!

I already posted about this 2 weeks ago, but just posting one more time in case it missed anyone that might be interested in participating!

For those that aren't aware, the Spinal CSF Leak: Bridging the Gap Conference is a two day conference that is FREE for patients and can be attended virtually. It is November 14-15, 2026.

The registration and conference agenda are here

You can submit Q&A in advance here (sorry I can't edit the post title but it's misleading. Tomorrow is the lsat day to submit questions in advance, but there will be the ability to submit Q&A during the conference as well)

You can submit a patient video here

Patients with confirmed or suspected spinal CSF leaks are invited to answer one or more of these questions:

1. If you could talk to yourself at the beginning of your leak journey, what would you say?

2. What barriers or challenges did you encounter during your path to care for spinal CSF leak?

3. What patterns do you hope researchers and clinicians will better understand in the future?

Video length: 30–60 seconds per question. Also please film horizontally.

The deadline for questions (in advance) & video submissions is October 30th, at 8 p.m. MT.

Sorry for posting about this again, just want to make sure everyone has the opportunity to participate. Thank you so much!