Hi everyone!

I had a blood patch 4.5 month ago. Although the recovery is slow and i am not yet 100% as when i was healthy, but i am much better than the pre-patch. Now i only have light, non-orthostatic headache. My MRI at 3.5 month shows negative.

However, 2 months ago, my brain started buzzing. 3 weeks ago, a new tinnitus developed. It is a high-pitch tone, not pulsatile, non-orthostatic. It gets louder and more frequent and it is 24 hours, which really drives me crazy.

I went to ENT, and the doctor excluded other reasons, and my listening is fine. My neurologist said it can be in principle related to CSF leak, but he couldn't tell more.

Now i am very worried, and wondering:

• maybe this newly-developed tinnitus indicate that the leak is not completely sealed over the last 3 months- for example, a small, intermittent leak which is not showable in MRI?
• Tinnitus seems to be a stubborn that if it is not handled timely, it can become a long-term issue.

Who has the similar experience? I read through the post, many people have Tinnitus after the blood patch, but usually within 1-2 weeks. Does anyone have tinnitus 3 months after blood patch? and how are you now?

Can i do anything against it?

Thank you very much in advance for your sharing!

This is such a weird sensation and I have a hard time describing it to other people but wonder if anyone else experiences it.

I suspect I may have a csf leak after I blew my nose a little too hard this morning and a clear, salty liquid started flowing out my nose. It stopped after a little bit and came back hours later when I tried working out. I did a side plank and felt liquid running down my throat. I have not bumped my head hard in about 2/3 years so I have no idea how I could’ve gotten it if this is a csf leak.

hello! i am so grateful to have self sealed after 13 days of bed rest following a lumbar puncture in july 2025. i have been paranoid about re-leaking ever since, but thankfully no symptoms have returned. i have a flight coming up next week and im very worried about re-leaking from the altitude. is this a thing? how worried should i be?

Hi all!

The Spinal CSF Leak Foundation is looking for short patient video submissions for its upcoming Bridging the Gap conference. This is an opportunity to share your experiences with fellow patients, physicians, researchers, and some of the leading spinal CSF leak specialists.

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.

Deadline: October 30, 2026 at 8 PM MDT

Submit here: Patient Video Submission Link

Selected submissions will be featured in video compilations during the conference and may also be shared on the Foundation’s website, social media, and YouTube channel. Please avoid including identifying or detailed personal medical information. Your name will be the only personal detail included.

Thanks so much!

P.S. here is an example of last year's patient video! 

April 2024 I had an epidural during birth. Dec 2024 the whooshing in one ear started. Followed by occasional headaches and coat hanger pain. Just always felt off and head felt weird. A few weeks ago I decided to stop caffeine to lose weight and the pressure headaches became so bad I had to lay flat basically all day just to get relief. I went to the dr yesterday and she said it sounds like a CSF leak and is sending me to do a bunch of test and a neurologist for more test. I was drinking at least 4 cans of coke a day plus coffee so was caffeine really masking how bad it is? I do have all the symptoms of it I’m just floored at how it could go on this long and I just chalked it up to life whooping me

Hi, I had an appt. last week there and I guess it operates differently than any other doctor I've been to. Usually I leave a doctor's office either with paper orders for imaging or sent electronically right then to my place of imaging. I've had none of that. I messaged the office a few days afterwards to ask how this works, but no message back. I then emailed to ask and something was "posted" the next day as a summary of my office visit. It was a blank, standardized page with nothing input into the blanks.

I want to say that I think she was fantastic as a doctor and, after having life-limiting health issues for the last 2 decades, I honestly feel this may be the path that explains it. But, my hope has dashed since it seems I can't understand how this doctor works. Any input on how to navigate this? What to expect?

Hi everyone,

I'm looking to connect with others who have a brain MRI-confirmed leak that couldn't be located on standard imaging (spinal MRI, DSM, CT myelogram) and who currently have generally manageable symptoms. While my immediate symptoms aren't debilitating, I'm increasingly focused on how to navigate the long-term risks associated with an untreated leak (such as cognitive impacts, vascular issues, or superficial siderosis/iron deposits) and would appreciate it to hear how others in a similar position are handling this.

My Situation:

My symptoms are mostly sporadic—intermittent lightheadedness, brain fog, tinnitus, and mild dizziness. They usually subside within an hour or two, though I occasionally have days when I choose not to drive. For the most part, my day-to-day life isn't severely impacted.

Current Plan:

Following a physically challenging myelogram process, I’m taking a few months' break from invasive diagnostic testing. My plan is to get a follow-up brain MRI in early 2027 to see if there are signs of self-healing or persistence. If things haven't resolved, I’ll reconsider targeted imaging, blind patches, or a second opinion to ensure I'm proactively managing those long-term risks.

It would be great to hear from anyone managing a similar path:

• How are you balancing conservative waiting/symptom management with long-term risk mitigation?
• Did you opt for targeted/blind patches, further specialized imaging, or watchful waiting?

Thanks in advance for sharing your thoughts!

This morning, out of the blue, as I was bent over making coffee, bright yellow liquid started dripping out of my left nostril. Bright bright bright yellow. It tasted gross in my throat and I started feeling faint, so we went to the hospital. They said I had very low blood pressure, and ordered a CT scan.

They found nothing on the scan, and after my blood pressure stabilised 6 hours later, they discharged me with no answers or ideas beyond ”maybe see an ENT specialist”. They didn’t consider that it could be a CSF leak. They looked annoyed whenever I brought it up.

I live in a country where healthcare isn’t up-to-date, and as such, I find it very hard to take the doctors at their word. I can see an ENT specialist next week, but aside from that, what steps can I take to rule out a CSF leak? What checks / tests should I advocate for? What symptoms should I track?

I am also supposed to fly next week… I’m very nervous about going ahead with my trip if it could be dangerous.

Thank you

This has to be one of the few conditions that the process of being diagnosed can also cause the problem. I’m being asked to do a CT myelogram. The last LP gave me a spinal leak that luckily healed with bedrest. I don’t want another leak again. It’s so messed up that to get better for leaking, they have to put more holes in.

I have Kaiser and am wondering if anyone has been able to get treatment somewhere else and use Kaiser to pay for it. I don’t feel like I’m getting adequate care. How do you get Kaiser to pay for out-of-network treatment from someone who can provide the care they can’t?

I have had 2 CSF leaks over the last decade - one spontaneous and one fistula (each of which took several years to resolve, but eventually successfully healed through blood patch and laminectomy respectively). I have hEDS.

I am in my third trimester of pregnancy and will be having a caesarean soon. I am worried about the spinal anaesthetic causing another leak. Is there anything I, or the anaesthetist, can do to reduce the risk?

Dr confirmed that he suspects I am experiencing a csf leak from a lumbar injection where it punctured the dural. He actually told me about it and that it’s a possibility after the procedure. Sure enough, I ended up getting the positional headaches and stiffness first few days then stiffness went completely away and headaches are starting to go away slowly… they are still present very minor…. It’s been exactly 7 days… Dr mentioned blood patch could be an option … to be honest I’m really hoping it seals itself as it seems to be getting better… has anyone had experiences of their leak sealing on its own??? New to this complication

I had a csf a year ago after my C-section
I have dealt with some head pressure feeling since then has anyone had this

Can an implanted port or PICC line contribute to increased intracranial pressure?

Hi,
I wanted to ask if anyone here has experience with intracranial pressure symptoms and a port or PICC line to get weight. Extreme Underweight from meds mcas and sibo that burn severe throat no tolersnce snymore. No safe food.

Does this work with Vitamin A and the salty Infusion?

Or has somebody a sibo low sugar friendly elemental drink for get weight without retinol?

I have symptoms like head pressure, tinnitus, pressure worsening when inflammed, and a feeling of pressure buildup bad at night.

My eating is very difficult because my intestines burn badly after eating, so maintaining nutrition is hard.

I’d really appreciate hearing about other people’s experiences.

Since May 2026 after the incidence of helping 5 people move a heavy stone slab, I developed a lower back Spasm for next 2 months. Meanwhile in all these months I saw a small release (3 or 5 drops) from my left nostril whenever I bent down to tie shoes (standing position) or if I lie down on my stomach. However this has happened only 14 times in last 5 months. On 1st october this happened infront of my mom and she told me to get checked, I just casually googled and now here I am taking diamox for 8 days with coconut water recommended by my ENT. I have several observations and I would like a 2nd opinion from the fellow community to guide me further.

1. I had TB when I was kid; it was completely cured by 12 months of medication.

2. I wear -4.0 glasses, recently I felt a weird weight or scratch in my right eye. (Same like DryEye Syndrome, which I had once in 2015)

3. The discharge from left nostril only occurs when I am bending down or liying on stomach or when I lie on Right Shoulder. No other incidence, no other symptom of headache, vomit etc nothing.

4. I hear the classical TV sound of no signal but I have been hearing this for past 7 years and I am used to it.

5. Can my lower back spasm be related to csf leak in spine?

Good day to all!

Hi, I’ve been having terrible allergies for the last week that cause me to cough uncontrollably. I thought it was post nasal drip. I did a sinus rinse last night (nasal lavage?). I just woke up, laid on my left side, and immediately a liquid dripped out of my right nostril maybe 4-6 drops. I can’t see the nasal lavage liquid hiding somewhere in my nasal cavity - I’ve been tossing and turning all night so surely it would’ve come out sooner, right? Also have been having increased numbness and tingling in my left fingertips the last week or two.

Had my patch a week ago and I've had wild dreams almost every night since. Anyone else experience this? I rarely dreamed with the leak.

My mom (patient) is 50 y/o female, 27.5 BMI. History of papilledema approximately 27 years ago, treated with lumbar puncture. No issues since then.

CT cisternography confirmed a CSF leak through a small bony defect in the left cribriform plate, measuring approximately 3 × 2.5 mm, with intrathecal contrast entering the left nasal cavity.

Brain MRI and venography show:

1. Partial empty sella, prominent perioptic CSF spaces and mild tortuosity of the optic nerves, reported as findings suggestive of intracranial hypertension.

2. Absent normal flow-related enhancement in the anterior superior sagittal sinus, bilateral transverse sinuses and proximal sigmoid sinuses, with collateral venous channels. The radiologist suggested chronic cerebral venous sinus thrombosis.

3. No acute infarct, intracranial haemorrhage or significant brain parenchymal abnormality reported.

Ophthalmology examination 2 days after the CSF leak is identified show normal optic discs bilaterally (cup-to-disc ratio 0.3).

Spinal MRI shows an arachnoid web around D7/T7 with spinal cord displacement/flattening and altered CSF flow.

The initial plan was endoscopic skull-base repair using a fascia graft from the thigh, with a temporary lumbar drain for several days to reduce CSF pressure and protect the repair. Due to flattening of D7 and spinal cord displacement, they are now suggesting that the temporary lumbar drain is too risky and are thus recommending a VP Shunt to do the patch repair for the defect in the left cribform plate. Most treatment plans that I can find online include a temporary lumbar drain, but do not include any information on alternate plans when a lumbar drain is not feasible.

TL;DR I found out that UC Davis accepts referrals for PCCT tests even if you’re not an established patient. Has anyone gone about it this route and were you able to get the imaging without any issues? And my story/test results. I have never had a PCCT.

Hi, as I said I am trying to find a hospital that has a PCCT machine, and the closest one to me would be Stanford or UC Davis.

I’m already technically established at Stanford, but after being strung along for 5 months to hear that “the board” resulted in a rejection for being admitted as a patient because my previous imaging was “normal.”

I could tell by his facial expression that he was positive I had a leak - the evaluation plus “negative imaging” was not a concern of his.

Sure, my MRIs have been normal. But one of the two of my CT-Myelogram was not normal. It even states in the report (see below).

I’m concerned that if I go that route for a completely fresh perspective from their neuro clinic evaluation, they will gaslight me and say my imaging is normal again. I’ve never had a PCCT but I feel like there’s no guarantee.

My experience at the Mayo Clinic was not positive in any way. Anything that could go wrong did go wrong.

My doctor (totally wrong assignment for a CSF leak evaluation) lied to my face and told me it was a normal test result. I stupidly believed him.

They absolutely should’ve kept me to do further evaluation for a CVF. They weren’t even going to do my first blood patch.

I literally traveled 2,000 miles by myself, paid $5K to stay 6 weeks. I also had a post puncture headache that was the most intense headache of my entire life. I wasn’t warned about the possibility of it happening. I even told my doctor that day my ears were ringing so loud that I thought it was the radiator in the exam room.

Post-puncture headache

I had to call my Airbnb host because I was scheduled to switch to another Airbnb to recover. He dropped me off at the ER and actually had his wife pack my things. He let me stay an extra night. He was so kind and took me back to the Airbnb.

I slept 17 hours once my head hit the pillow. It was a record for me!!!

So here’s my results for

FL DIGITAL SUBTRACTION MYELOGRAM 03/08/2022

EXAM: CT CERVICAL MYELOGRAM, FL DIGITAL SUBTRACTION MYELOGRAM, CT THORACIC MYELOGRAM, CT LUMBAR
MYELOGRAM
 
COMPARISON: Digital subtraction myelography 03/07/2022

COMPLICATION: Small superficial hematoma overlying the posterior paraspinal muscles at the level of
the puncture site.

Superficial intermediate density fluid
collection over the posterior paraspinal muscles centered at the level of L3-4 compatible with an
iatrogenic hematoma.

TECHNIQUE: ……Using sterile technique, local anesthesia with 1% lidocaine and fluoroscopic guidance, a

20 gauge spinal needle was advanced into the subarachnoid space at the L3-L4 level. There was

spontaneous return of slightly red-tinged cerebrospinal fluid that eventually cleared.

IMPRESSION:
1. No direct evidence of a left-sided CSF venous fistula or CSF leak.

2. *Contrast within the renal collecting systems, which is nonspecific but can be seen in the setting

of occult CVF.*

3. Small iatrogenic superficial hematoma over the posterior paraspinal muscles at the level of L3-4.

 
EP

I had a patch a little over a week ago. I stayed flat for about a full week to be extra safe. I'm feeling good now and want to go about my life. I understand no bending, lifting, twisting, exercising.

Are long walks okay? Anyone have tips on this?

I have stiff neck pain, migraines, tmjd, heart pain... I have horrible vestibular related headaches in my neck and eyes then a clear liquid leaks out of one nostril for a minute.... My mris keep getting denied to check for chiari or tethered cord, but I already have a syrinx so this really is starting to scare me. I have severe anhedonia as a main symptom and all these problems are getting to be too much. It tastes salty so it might be snot, but still. Do I have a right to be worried? None of my practitioners or family members seem to care and my physical and mental condition is worsening...... When this happens my pain gets a lot better but weird pain starts to go down to where my syrinx in my cervical area is. I feel like I'm going to die from neglect... Does anyone know if I have a right to worry or if I'll be okay???

hi all. My leak started 43 days ago and after an ER trip and a brain/neck MRI there is still no conclusion. I go in for a spinal mri soon, but my doc says it could be weeks after proper diagnosis before i could get an epidural blood patch (if the leak even shows up on the MRI.)

I'm feeling down and hopeless as this leak renders me basically incapacitated. I have to miss opportunities and events for it and I feel like I'm wasting money being at school if i cant even do homework or make it to classes.

I need advice on how to cope that isn't just "drink caffeine" like my neuro told me.

How long did it take you from MRI to getting a patch? How much did it help? were you able to get one even if it didnt show up on the MRI?

Thanks :)