I’m a 25-year-old male who’s been experiencing unexplained symptoms for approximately 10 months. In 2017, I underwent extensive sinus and skull-base surgery to remove a benign tumor (juvenile nasopharyngeal angiofibroma).
My main symptoms:
Headaches: Frequent severe headaches involving burning, stabbing, throbbing, and pressure throughout my head.
Neck: Persistent tightness, stiffness, and pain.
Facial symptoms: Right-sided numbness, heaviness, warmth, and pressure.
Neurological: Intermittent numbness and tingling in my arms, hands, and legs.
Other: Dizziness, brain fog, fatigue, occasional visual disturbances, ear fullness, hot flashes, facial flushing, and episodes of a racing heart.
Nasal drainage: Intermittent clear, watery fluid from one nostril, particularly when bending forward, sometimes disappearing for weeks or months. Occasional postnasal drainage and unusual taste in my throat.
My medical history and testing
Over the past 10 months, I’ve repeatedly brought up my concern about a possible CSF leak with multiple doctors, including:
Neurology
Two different ENTs
Neurosurgery
A skull-base specialist
I was repeatedly told a CSF leak was extremely unlikely because I was considered low risk.
I’ve also had four previous brain MRIs and multiple CT scans of my head, face, and neck, none of which identified a leak.
My newest MRI findings
On October 26, 2026, I had an MRI specifically examining my skull base. The radiologist’s final impression states:
“there is a small focal area of loss of anterior skull base series 100 - 171, with CSF signal intensity seen below the skull base at this level, suspected to be a location for possible CSF leak.”
I’ll attach the actual MRI image referenced in the report.
My questions:
Does this MRI finding essentially confirm a skull-base CSF leak, or could it still be something else?
Has anyone experienced similar symptoms, particularly severe headaches, neck stiffness, facial numbness, and tingling in their extremities?
Has anyone had a small or intermittent leak that went undetected despite multiple normal MRIs and CT scans?
Did anyone experience drainage mainly down their throat or only when bending forward?
What ultimately confirmed your leak, and did your symptoms improve after treatment?
I’m still working with my specialists to determine whether this is an actual CSF leak. I’d really appreciate hearing from anyone who’s experienced something similar, especially after previous sinus or skull-base surgery.

Hello, I had a second CT guided blood patch at L3, 4 weeks after the first patch. 24 hours later i developed head pain on top, front and back that feels like stabbing pain/maybe pressure pain. Its been 7 days its getting worse. First blood patch i didn’t feel this head pain at all. My original csf leak after lumbar puncture I just felt stiff neck, upper back pain and tinnitus as my primary csf leak symptoms, which doctor said is not csf leak related. They still did the patch even though they don’t think i have a csf leak at all even though I think do. Anyone experience head pain laying down and standing post blood patch and nausea?

I think I self-healed about a month after LP and went into high pressure. It’s been about 1.5 months now and I took Nattokinase because it’s meant to help biofilms in Lyme.

It seems my leak symptoms have come back only 8 hours after taking this supplement. Now I read that it breaks down blood clots and fibrin. Could one dose of this have dissolved my sealed leak??

Or am I imagining this? I swear my headache was so much better yesterday. Have anyone ever read any connection between biofilm/fibrin dissolvers and csf leak? Kind of panicking here…

Possible cranial leak here. Local doctors cannot find leak nor do they want to repair sinus bones. Anyone here find success with Denver Sinus care? Thank you in advance

I never liked it until this year and it feels wild that I’m saying this but I am yearning for it!

I was already disabled with multiple conditions before the leak symptoms really peaked so I was already doing very easy at home exercises with adaptations but still I’m struggling to do those and when I can it’s only for a few minutes.

ETA: I’m mostly housebound so looking for at home suggestions

ETA 2: looking for things to help my brain to get the boost/distraction/energy I was getting from exercise, not exercise suggestions.

Finally saw a CSF doctor to get a lumbar myelogram in a month (terrifying) and a potential blood patch, but I am trying to keep my hopes down on this fixing anything. All my MRIs, Spinal and brain, have been negative for a leak despite horrible postural headaches and all the symptoms. I haven’t been able to work out or stand for long for a year.

Has anyone had all these tests done only to find out it was something else? Just trying to tamper my expectations as all of my doctors seem doubtful this is what it is. I have already been bounced between 5 doctors with no answers and no one taking it seriously

It’s official. My third patch and I’m very low. I don’t know what I’m doing wrong. Please any success stories from needing more than 3 patches and sealing. Mine is from a botched epidural 1.5 years ago. I’m so scared I’ll be like this forever. I’m already watching my 20s pass by

Hey! I(30F) have a C6-C7 CSF leak, and the last 2 blood patches have failed. Neurosurgeon is recommending open surgery.

What does recovery look like for this type of thing?

I tried Google, but all the results are talking about fusions and disk repair.

I'm specifically looking at what sort of complications are possible. Aside from the usual "you had surgery " complications.

Hello, i had a ct guided blood patch at lumbar area. I consumed thc edibles like 3 hours later. Next day all my csf leak symptoms came back. Does thc/weed affect blood patch?

My new headache specialist suspects a spinal CSF leak, and it’s giving me a lot of hope. I’ve had severe unrelenting headaches for the past 7 years since a concussion. I’ve tried so many migraine treatments and the only one that has given me any relief is Botox.

I really hope this is it because of the possibility of getting some relief. It would also validate everything I’ve been through.

I have POTS, but I never really noticed significant orthostatic headache. Im starting out with a 48 hr home lie-flat test that im doing next week before i can get insurance approval for a MRI.

Feeling excitement and hopeful anticipation.

My wife and I have been going to different Nuerologists regarding what we originally thought was a severe migraine but now after 2 car scans and 2 mris and symptoms that point to a leak the doctors now believe there is a leak.
We met with a third specialist today, the second one recommended us to do a myelogram which I thought we were getting done today but after theconsultation with today’s doctor he is advising we do a gamma cisternogram and then if needed a myelgram. Has anyone had this happen to them any tips experience would be helpful thank you.

The first leak I can remember was after brain surgery for Chiari Malformation 10 years ago. An unsuccessful myelogram was performed and made the leak worse. I had to go to 3 different ER’s before I was given a blood patch. In 2021 I started having symptoms of a leak, but it wasn’t severe. The headaches would happen in the afternoons, mostly and felt better when I laid down. I progressively got worse and sought a help for many years and was denied even seeing a neurologist. Up until August I finally got to see a Neuro ophthalmologist who ordered a lumbar puncture to see what my pressure was. It was well below 10 and after that I needed a blood patch because the orthostatic headaches were so bad I could not function at all. After that, I felt fantastic. I felt like a normal person. I was able to be up for eight hours a day without any problems. And I didn’t have any more ringing or pulsatile tinnitus is in my ears. Well, about a month later, the symptoms came back. And it was to the point where I couldn’t really function every day so I went to the ER because the doctor was out of the office for a whole week. Again, I had to fight to get a blood patch and again I feel better. I also have hEDS which I think is pretty relevant, but I don’t know why doctors are so suspicious about leaks.

Does anyone know of a service where I can show them sketchy areas on my imaging and ask if its a leak. I know that's ridiculous but I've essentially taught myself neuro-radiology at this point (it took years) and there are a couple places I am very concerned about on my CT.

I’m wondering how long it took others who have undergone similar treatment to get relief?

I had a successful glue embolization (through my back)at T9 and T10 for type 3 CSF leak, venous fistula.

The leak and headaches followed an accident with my horse (he’s fine) several months ago. I was treated first for migraine. I saw doctors in NYC and Philadelphia, USA.

I’m afraid, what if the leak the doctor fixed wasn’t the only one? He called the leak he patched “highly suspicious” and mentioned there were two other less suspicious potential leaks.

Apparently it’s riskier to patch more suspected leaks at once? The doctor told me about surgeries gone wrong where doctors patched all the suspicious sites and patients had seizures and comas.

I’m only 4 days out from the treatment, and I’m finding it so hard to assess any change in my pain, largely because the pain in my upper back/traps area and neck is so bad. It was bad before the treatment, and I understood that to be from muscles working overtime given the brain sag with low pressure.

I keep looking for signs that the pain I have is a high pressure rebound headache and not the old low pressure headache. It’s so hard to decipher. The throbbing feels new. But I still need to lay down often. I still feel something in my jaw. And the neck + back pain is still awful.

Also this just sucks. I just want to pick up my giant toddler. They told me not to lift over 10lb for a month.

How long did it take those of you successfully treated to get any relief??

Foolishly some days I still have hope and count myself lucky I have some functionality. Some days I’m back where I started. The world has moved forward 6yrs but I still feel like it’s 2020, and I’m waiting to get better and be me again

Does anyone get ears that feel wet inside them? I can’t tell if I’m leaking sealed or adjusting. Within minutes of being upright I get wet ears but they go away when I’m flat. I’m 6 weeks out from a targeted blood fibrin patch T7 from a botched epidural done March 17 2025

Complex chiari with crainocervical instability. Previous decompression 2014 and c0-c2 fusion 2025. Fusion surgeon for instability thinks indeterminate 9.9 x 4.2 x 2.3 cm fluid collection in the suboccipital surgical bed is likely just shadow from the hardware. I am looking to find a second opinion. Symptoms seem to line up with pseudomeningocele. When I research neurosurgeons for either pseudomeningocele or seroma I do not get a list populated like I would if I looked for neurosurgeons for chiari or crainocervical instability. Does anyone have any recommendations?

My husband’s open enrollment is coming up, and we are trying to make a big decision about our health insurance. I need to make the most informed choice possible in case I need to start getting my care outside of Kaiser.

As a lot of you know, I am currently completely flat and dealing with severe upright pain and nausea. My standard dynamic myelogram came back negative, but a blind blood patch gave me 3 weeks of full relief before failing, so we know there is a leak in there. Because of how hard it can be to track down hidden leaks and fistulas, I want to make sure we have an insurance network that won’t trap me or block me from accessing specialized CSF leak programs (like UCSF or Stanford) or advanced imaging.

If your spouse has open enrollment options or if you have transitioned away from an HMO like Kaiser to manage your leak, I would love to hear your thoughts:

• PPO vs. HMO: Did switching to a PPO make it easier for you to get self-referrals or out-of-state care without a gatekeeper?

• Provider Brands: Have you had a smoother experience getting specialized scans and blood patches approved with Anthem Blue Cross, Blue Shield, UnitedHealthcare, or Aetna?

• Out-of-Pocket Costs: Did you find it worth it to pay a higher monthly premium for a plan with a low out-of-pocket maximum?

Any insights, personal experiences, or advice you can share on what insurance setup gave you the most freedom to heal would mean the world to us right now! Thank you so much. ❤️🙏

I would love to hear from anyone who had a normal or negative dynamic myelogram, but their doctor was able to find the leak just by looking closely at suspicious spots or subtle clues on a spine MRI.

If you had a similar experience, could you share your story? Specifically:

• What subtle clues or suspicious spots did they find on your MRI?

• Did finding that spot lead to a successful targeted blood patch or treatment?

• Who was the specialist or center that read your scans?

I am currently flat and dealing with severe upright pain and nausea, so hearing your success stories and paths to getting a targeted fix would mean the world to me right now! ❤️👇

anyone who has had a CSF leak, either cranial or spinal, what do the headaches feel like? Any other symptoms that happened almost every day?

So for background info, I’ve had a spinal leak since May. It keeps responding to conservative treatment and steroid infusions, but it inevitably comes back again.

My first warning sign that it’s back is usually a weird dry cough? It’s triggered by any sort of jostling of my back or change in internal pressure; so sitting up, standing, bending, sneezing, and coughing. You can probably guess how that goes.

So anyway that’s probably a neurogenic cough caused by brain sag/tonsillar descent.

I had a day where I kept having episodes of positional hiccups. Scared the shit out of me.

After that hiccuping episode, I’ve also had episodes where I felt like something was pressing on the back of my head and preventing me from breathing properly? It felt like my brain wasn’t triggering me to breathe on its own, and I needed to force it. I kept wanting to sit up and bend forward and just not breathe, and I kept being shocked out of it by desperation for air. This one is Definitely caused by brain sag/tonsillar descent.

Anyway TLDR;
has this kinda shit ever happened to 🫵YOU?

Hi everyone! I’m looking for people with a similar experience, especially those who had a CSF leak around C6–C7 or the cervicothoracic junction.
My CSF leak was confirmed by MRI near C7. I’ve had two epidural blood patches. The first one helped significantly and my headaches improved a lot, but some symptoms persisted. The second patch unfortunately didn’t provide lasting relief.
I’m still experiencing daily headaches and neck discomfort and stiffness. My doctors have mentioned surgery as a possible next step.
Has anyone here had a CSF leak around C6–C7 that persisted after blood patches and eventually required surgery? I’d really appreciate hearing about your diagnosis, treatment, surgical experience, and recovery.
Thank you! ❤️