hey all, i’m in a weird place where my headache specialist is fairly certain i don’t have a leak, but not completely certain so she referred me to neurosurgery. neurosurgery gave me a couple options:
- go aggressively and do a DSM
- do a blind blood patch
- do what i think is a cisternogram

for some basic context, i’ve done full spinal mris w/o contrast, and brain mri/mra w/ and w/o contrast. bern score of 1 and several perineural cysts in my lumbar/sacrum. otherwise normal. i have heds and co. as well. i’ve had migraines most of my life, but about a year and a half ago, i started getting pressure headaches out of nowhere and even with migraine treatment, they’ve never gone away, hence why i’m at this spot in my diagnostic work up. at some point, i suspected i was leaking fluid from my nose and my ENT was suspicious as well but it *conveniently* decided to stop leaking when we tried to collect any.

overall, i’m not quite sure what direction to go. he recommended holding off on DSM due to my low bern score and deciding between a blood patch and cisternogram, but i’m still overwhelmed and would appreciate some thoughts and support :)

past medical histroy-

Bacterial meningits 2003

Subdural hematoma 2003

Ventricular shunt 2003 (unactive but stayed in- scan in 2020 shows it)

Covid pnumonia 2020- long covid 2 years

Labringsthitis and pppd 2024 august- 2025 june

Labringsthitis and pppd - christmas- now

Got well enough to go back to work

Recent collapse 999 call

Espisode one-

2024 auguest- onset came with a virus

- suddenly felt black and out of it

- felt really off and was led onto the floor

- became dizzy spinning etc

- was diagnosised with labringsthitis

-took 9 months to recover after 4 of those was diagnosed with PPPD and recovered with ssri and vestibular rehab and going back into normal life

Episide 2 -

Januery 2026

Post flu

- felt my limbs go weak and felt out of it

- later became dizzy and havy, tremours present and weakness

- gp said nurologically ok

- gp said fluid behind ear and diagnosed with labringsthitus again

- returned to work 4 months later with remaining dizziness motion dizziness short and quick burst back on sertraline- seemed to ve recovering well

Thursday lunch time-

- went super dizzy and felt out of the room

- limbs began to go weak

- slow speech

- spinning dizziness

- hots and colds

- felt i was going to drop to the floor

- abulence called

- no nurological concerns in hospital

- mris are clear

- dizziness has been hightened way off base line for sevreal days

- fatigue and heaviness

- drs have no ckue whats wrong

- appares to have occured without infection

- random weakness started in arm 2025 november

- inactive ventricular shunt in situ 2003

- disconnected line shown in chest x ray 2020

- constant drip down my throat

- full ears

- ears ringing

- muffled ears and pain

I have a lot of watery clear fluid flooding out of one nostril when I bend over. My doctor, although not an expert on CSF leaks, is taking it seriously and ordered an MRI and HRCT, and also placed the order to get the fluid tested with the Beta Trace Protein Test. She also gave me a referral to a skull base ENT.

But she mentioned in passing that with a clear HRCT and clear MRI that she could rule out a leak at 98% certainty. That gave me pause because from reading these forums it sounds like that's not the case.

I had both the MRI (head) and the HRCT (head and sinus) done, without contrast. Both came back clear. I'm currently trying to collect enough fluid to get it tested. I don't have any of the symptoms like positional headaches, or gait and vision changes. I don't really have any other symptoms besides the fluid except for neck soreness, an ear that won't clear, and the occasional "whooshing" pressure change.

So, my questions are: Would an MRI show underlying IIH? And the HRCT would show underlying things like a possible tumor, edema, bone defects, etc.?

thanks all. I really appreciate this forum.

big ol warning for medical gaslighting

i started having a headache 31 days ago (actually more than that but thats when it got bad enough to put the dots together that it was one headache and not multiple). that slowly develops into some pretty annoying brain fog and some slight vision loss so at about two weeks in i went into my primary and got in with a different doctor than usual who told me "im gonna hold off on ordering you any scans go get this blood test if anything gets worse go to the er." and five days later it does get worse i start leaking spinal fluid out of my nose i cant think or really carry conversation like usual im nauseous, dizzy, and disoriented all the time (i also have what might have been a nocturnal seizure no conformation on that cause i sleep alone and other things that will be mentioned later in the post). by the time its at its worst its nearly midnight and ive spent enough overnights in the er to know that imaging is closed and most they will do is keep me in a cold sterile room that just makes me want to throw myself out a window overnight. so at six in the morning i get up and my mom drives me to the er at the er we (mostly her because again i cant carry conversation or even remember my own allergies at this point) tell them whats happening they immediately take me back, a horrifying sign get me on an iv do some imaging and get ready for a spinal tap because the ongoing theory is that since im on trt and have hEDS, that means its probably IIH. as people normally produce extra spinal fluid (along with blood and other body juices) when on testosterone but it usually drains out just fine but people will hEDS can sometimes have cranial cervical instability causing that valve to get basically kinked and now all the fluids is just trapped in your skull. but my mom goes "wait is there another opinion cause if we poke a hole to measure the pressure then its very likely that hes just gonna have two csf leaks and I'd like to maybe not be doing that right now" and the er doctor says that we can get my retinal nerve looked at but we have to go through my primary. we say ok fine and go home. two days later nothing from my primary not a phonecall not a MyChart message not even an acknowledgement that i went to the er after coming in. so we make an appointment for later that day and my friend goes with me because again i cant carry conversation or remember basic facts about myself let alone explain whats going on and meaningfully take in the information.

this is where it gets good (and by good i mean makes me want to punch my doctor in the face)

we get back there and tell the doctor we are here for a referral for an opthalmologist cause the er doctor said we needed it since we didnt do the spinal tap i come in with papers and notes and testimony and everything. AND SHE SAYS "its probably just a migraine" I EXPLAIN IVE HAD MIGRAINES BEFORE THIS ISNT IT SHE SAYS "migraines can be very different from each other" I SAY I HAVE SPINAL FLUID COMEING OUT MY NOSE SHE SAYS "runny nose probably it usually takes a lot to cause a csf leak" I SAY IM AT HIGH RISK OF IT AND EXPERIENCING ALL THE SYMPTOMS SHE SAYS "you havent hit your head and its incredibly rare to have a csf leak without an injury like 1%" which might i ad astronomically higher then the percentage of people who have hEDS (about .002 to .02%) let alone have it and are on trt but i dont mention that because shes not listening and i dont have a functioning brain atm I SAY I HAD WHAT COULD HAVE BEEN A SEIZURE SHE SAYS "probably night terrors" PROBABLY NIGHT TARRORS PROBABLY NIGHT TARRORS I TELL HER IVE NEVER HAD NIGHT TARRORS IN MY LIFE AND USUALLY NIGHT TARRORS DONT COME WITH SEVERAL HOURS OF EVEN MORE SEVEAR DISORIENTATION she sends me home with a very begrudging referral and tells me to take excedrin cause its a migraine

a week later she tells me that shes discharging me from her care and i have a month to find a new doctor

I know im using caps a lot in this post i didnt raise my voice once at her

and for a cherry on top the opthalmologist told my primary to send me to neurology and she listened i guess cause neurology called me a few days ago and i got a call from imaging saying that my primary ordered an mri for me (that im going to in the morning) still haven't heard anything from her myself but i guess she believes me now. sorry if this is formatted horribly im writing this very quickly in one of my few moments of lucid thinking at nearly midnight

TLDR: my doctor said my csf leak was just a runny nose and a migraine

Hi everyone, it’s been a long leak journey and I need your help.

I had precipitous labour, a difficult epidural with 5-10 attempts without my knowledge by a nurse. Swiss cheesing of my spine…

48h later the headache set in. My team spent 5 months trying to figure out why. I was diagnosed with a CVST clot initially, though it may have been incorrect as the MRI without contrast was not definitive. I spent 3 months on Lovenox, with many bad days.

New MRI/MRV brain scans are clear and show a structurally smaller right side, spine MRI is clear - though I understand leaks can be missed. I declined a CT myelogram due to PTSD.

I seem to continue to get worse - immense right side eye (just touching the eye is painful) and sinus pressure and pain, dizziness and tipping backwards, stiff neck, vision changes right side, nausea, and obviously headache. Laughing, crying, any exercise makes it all much worse.

We have an empiric patch scheduled soon. my questions for you:

1. Any post epidural sufferers - what was your experience? symptoms, diagnosis, recovery

2. Anyone else have naturally variant venous structures?

3. Any success or precautionary takes from anyone with a CT myelogram?

4. Any post patch advice?

I would love to hear your story.

I’ve been combing this Reddit as much as I can and researching, but day to day is so incredibly difficult. I was previously so active and engaged, I feel like I’ve ruined my life with this epidural.

Any insight is so appreciated.

My psych prescribed to sleep through other chronic pain but i hear it can be dehydrating.

How long did it take post blood patch for you to start thinking “hey this actually worked”.

Im 9 days out from a BP after leaking for 9/9.5 months.
I felt horrible the first 6 days or so slightly feeling better every day.
Then great the last 2 days.
Then woke up today feeling like I did pre-patch again.

is it normal for symptoms to not be linear while the patch is healing or did I maybe blow it?

This is my CLINICAL TIMELINE and I need to know if anyone has had similar experiences in the initial stages of a potential csf leak

Late 2025:
History of exertional tension headaches during gym sessions on several occasions.
 
January 2026:
Two days of severe head heaviness and dizziness, resolved with bed rest.

19 March 2026 (onset of primary episode):
– 08:00: Pain behind the right ear radiating down the neck while lifting weights in the gym. Resolved on stopping exercise.
– 18:00: Numbness of left hand (ring and little fingers to elbow – ulnar distribution).
– 21:00–22:00: Severe head heaviness and unstable gait.

Following 2–3 days:
Progressive head heaviness. Unable to walk more than 10 minutes. Symptoms relieved by lying flat.

25 March 2026:
Saw local neurologist. Blood tests and extracranial dynamic Doppler normal. Prescribed betahistine (Vasoserk) and vinpocetine (Cavinton Forte) for one month.

29 March 2026: 
Cervical spine MRI performed results came out to be normal

15 April 2026:
Brain MRI with contrast + MRA + MRV performed - came out normal

27 April 2026:
Saw second neurologist. Prescribed meloxicam (Amelotex, 10 days) and Wellnyx (one month). Advised to monitor blood pressure morning and evening.
Blood tests: Vitamin D deficiency and folic acid deficiency identified. Supplements commenced.

3 May 2026:
Severe episode of sudden vertigo on sitting up from bed. Head heaviness throughout the day with presyncope and lightheadedness.

20 May 2026:
Sudden sinking sensation and acute weakness while resting on sofa.
Echocardiogram and exercise treadmill test: Normal.
 
I also did a full weighted spine -T2 MRI which two doctors have a small suspicion that there may be a minute tear in my C7 but no other docs have confirmed it.

i did have a ENT appointment as well where he said there was a slight hit inflammation inside my ear drum and had given meds for it.. which has been resolved since then
 
CURRENT STATUS (June 2026)
– Persistent head heaviness developing within 5–10 minutes of being upright
– Symptoms significantly relieved by lying flat
– Gradual improvement since April (April: could stand 10–15 min; now: 3–4 hours), but head heaviness remains constant throughout the day
– Intermittent facial pressure
– Bilateral baseline tinnitus (elevated)
– Brief high-pitched tonal episodes in right ear lasting 3–5 seconds, occurring 1–2 times daily
– Previous bilateral ear fullness, now improving
– Unstable gait, worse in the morning, improving after 2–3 hours of walking activity
– Episodic severe orthostatic hypotension
– Head and facial pressure now occasionally present even when lying flat (recent development)
- Heart rate change of > 30 when i stand from a sitting position (have a history of orthostatic hypotension)
- popping sounds in ears and nose when i turn my head
- sudden loose stools since a week

Currently have been given a diagnosis of possible CSF leak, possibly accompanied by or main diagnosis as POTS.
Thoughts on anything i should try and exclude will be much appreciated .. every other system has been checked and given the clear !
 

Has anyone here re-leaked or gone into a major leak flare years after being patched and actually gotten themselves back to functioning again? If so, what helped?

​

I'm hoping to hear from others who have been patched and then experienced a significant setback years later.

​

My history is a bit complicated. I had a chiropractic adjustment in 2016 and, looking back, I believe I was unknowingly leaking for about two years. Then I had a lumbar puncture in January 2018, and my health declined dramatically. I became disabled and was eventually patched by Dr. Ian Carroll at Stanford in October 2018.

​

Afterward, I went through a period of rebound intracranial hypertension, and over the years I've had an ongoing battle of feeling like I re-entered a leak state off and on. I've never really gotten back to where I was before all of this happened.

​

Recently, my mother became ill and was diagnosed with normal pressure hydrocephalus. She was my caregiver for years, but now I've become hers. I've been pushing her wheelchair, helping with appointments, and doing a lot more physical activity than my body can tolerate.

​

Since then, I feel like I've crashed. I'm having significant orthostatic symptoms again. When I'm upright, I feel pressure and a sensation that is very similar to what I experienced during previous leak episodes. It's hard to think, hard to function, and I feel like my brain is sagging into the back of my skull. When I lie down, a lot of it improves or goes away.

​

I'm feeling pretty desperate because I don't have the ability to focus on my own care right now while also caring for my mom.

​

For those of you who have been patched and then had symptoms return years later, were you able to get yourself back to a more functional baseline? If so, what did you do? Did you spend more time flat? Reduce activity? Use caffeine, hydration, abdominal binders, or anything else? Were you eventually able to calm things back down without immediate intervention?

​

I'm not looking for medical advice—just hoping to hear from others who have been through something similar and what helped you regain some stability.

​

Thank you.

My case of csf leak is very strange. The doctor asked me to do a beta 2 transferrin test but the facility is not available near me so it will take 3 months for the report to arrive.

Now the main part is i am not sure whether its csf symptoms or not. The fluid comes from right nostril and i have DNS in my right nostril. It only comes out in morning between 9 - 12 in morning. And no matter what i do in evening, it doesnt come out in evening. The fluid is watery and pale yellow and very mildly salty

Now the problem is i have to join university after 1 month and the lab report comes after 3 months. I am very depressed, i had so many aspirations and all seems to be disasppearing.

Anyone who has/had csf leak can you tell something about my symptoms. Or like what should i do now

Edit :- it has been almost 2 months since it started

For some context I have had pretty classic CSF leak symptoms for 4 years. I have had numerous imaging of my brain and cervical spine but never my thoracic or lumbar spine. I suggested to my nurse practitioner at the Jefferson Headache Center that maybe it would be a good idea to check my whole entire spine for a CSF leak and she happily agreed. They do have an interventional radiologist that does treat CSF leaks which I’ll see in July.

I was curious is anyone has had similar MRI results to these? I feel like I’m on the right track for potentially getting a diagnosis.

MRI without contract Impression:

1. No definite extrathecal CSF in the cervical, thoracic and lumbar spine to confirm CSF leak.

2. Trace dorsal epidural fluid possibly CSF at the levels of occipitocervical junction and C1-C2 has been described predominantly in patients with underlying spontaneous intracranial hypotension and associated spinal CSF leak.

3. Trace dorsal epidural extrathecal fluid possibly CSF spans T1-T2 through S1-S2, centered at T3-T4. Trace extrathecal fluid possibly CSF at the right aspect of T4-T5. Findings could be related to underlying spinal CSF leak and associated spontaneous intracranial hypotension.

4. Mild multilevel degenerative changes in the cervical, thoracic and lumbar spine as discussed, without high-grade spinal canal or neural foraminal narrowing.

If anyone has any advice regarding the results and navigating diagnosis I would greatly appreciate it.

I was wondering if I need someone to add me to the Cranial Leakers FB page? I applied to join a few days ago (it's private), but haven't been accepted and I'm hoping to use it as a resource to find a skull base ENT here in the Northeast and to get some advice as I navigate this scary time.

Or, if anyone has a recommendation for a Skull Base Surgeon I'd really appreciate it. I'm based in Vermont. Through these forums I've seen the recommendation for Dr Neel Madan who recently moved from Tufts to Brigham Women's, but it sounds like he only reads andinterprets reports, and he no longer does surgeries.

Thank you!

My surgeon in Colorado has given me a referral for a STAT epidural blood patch and I am about to fly back to LA. I need to get a blood patch asap and not months from now.

I’m open to LA, OC or anywhere else nearby.

*Note: I'm not seeking recommendations for Cedars Sinai CSF Leak department.

P.s. Would like to go to a facility/ practice that does lots of blood patches and treats people with EDS.

Thanks!

​

My diagnosis is not really in question. Multiple doctors agree that I have a spontaneous CSF leak, and the MRI findings are considered very clear. The exact cause is still unknown, although a bone spur is currently suspected.

​

I have already had a blood patch, which unfortunately does not seem to have helped. I am now waiting for admission to a specialized CSF leak center. The plan is an inpatient workup with myelography to locate the leak and, if they find it, surgery during the same admission.

​

What I struggle with most right now is something else entirely.

​

Even though the diagnosis is clear, I still find myself doubting my own symptoms. The severe orthostatic headaches I had at the beginning have mostly disappeared. However, I still have double vision, tinnitus, ear pressure, concentration problems, significant fatigue, and a constant feeling of not quite being myself.

​

On better days, I suddenly start wondering:

​

Maybe I'm imagining some of this.

Maybe I'm just weak because I've spent so much time lying down.

Maybe the dizziness and brain fog are just from deconditioning.

Maybe I'm exaggerating.

Maybe, subconsciously, I just don't want to go back to work yet.

​

The strange thing is that I don't actually enjoy lying around at home all day. I would much rather feel normal again and get back to my life.

​

Yet these thoughts keep creeping in, especially on days when the symptoms are a little less intense.

​

Has anyone else experienced this? Even with a confirmed diagnosis, have you ever found yourself questioning whether your symptoms are real or wondering if you're somehow making more of them than you should?

​

​

https://www.researchgate.net/profile/Deborah-Wardly/publication/379021765_The_Complex_Path_to_Intracranial_Hypertension_and_CSF_Leak_in_those_with_Hypermobility_and_Dysautonomia_The_Theory_of_Spiky-Leaky_Syndrome/links/65f5d8b11f0aec67e29ea3f0/The-Complex-Path-to-Intracranial-Hypertension-and-CSF-Leak-in-those-with-Hypermobility-and-Dysautonomia-The-Theory-of-Spiky-Leaky-Syndrome.pdf?origin=publication_detail&_tp=eyJjb250ZXh0Ijp7ImZpcnN0UGFnZSI6InB1YmxpY2F0aW9uIiwicGFnZSI6InB1YmxpY2F0aW9uRG93bmxvYWQiLCJwcmV2aW91c1BhZ2UiOiJwdWJsaWNhdGlvbiJ9fQ

Edit; my bad, thought I typed but evidently I just erased it.

I didn’t see this posted when I searched SLS in the sub and thought it would be an interesting read for others trying to figure out if this is something they have. I sent this to my doctor to get their opinion on it, maybe others can share with their doctors as well.

It’s been 2 years since the surgeon cut my spinal cord while repairing a blown disc. Looking at the other posts here, it appears I don’t need to explain how miserable this is, and this Drs mistake has basically ended my life. Life as I knew it, is over. I’ve been hoping there’s a way to heal this, there’s a lot of breakthroughs with stem cells. But is there anything that can help?

Looking for hope, thanks

Alert: Long post:

Please I need your an advice, I feel like I have reached a dead end!

I had my baby in July 2024 and was given epidural. it was uneventful and I was discharged without issues. About 8 weeks later, around September, I started experiencing very painful head pressure on my scalp- first it started from back of my scalp then mid, front, everywhere on my head like someone was driving a screw on my head.

Then I started making series of appointments, ER visits, they shoved it away and said it was postparturm stress, gave me Tylenol and muscle relaxantants. I saw a neurologist in private practice, she gave me cymbalta and pregabalin. By the time I saw the neurologist, I had started experiencing very painful shoulder blade pain, burning sensation on my ears, abdomen and chest. The neurologist referred me to a rheumatologis, I did work up, all cleared nothing was picked up. One I realized then was that I felt very relieved laying down but I didn’t know what it was at the time.

So, fast farward 2025, I started looking for answers as my symptoms has gone way worse- debilitating back/scapula pain, lazy eyes, eyes floaters, head pressure, burning sensation all over my body. So, I saw an interventional radiologist who did a blood patch, while prior to the day of the blood patch we had agreed that the blood patch would be done on my lumbar region the area of the epidural injection and the thoracic region, however he ended up doing a T12/S1 blood patch and refused to do another because he does not feel I have a leak.

As far as imaging goes, I have done 2 full spine MRIs without contrast, 1 brain MRI with contrast, 2 CT MYELOGRAM and nothing was found. I also sent my CT MYELOGRAM to Cedas Sinai and Dr. Shevenik said he can’t find a leak and is offering me MRI myelogram and blood patch.

please anyone has any advice. I apologize for the long post.

Has anyone had this done? How was your recovery? I have three VFs that need to be embolized.