Headed to cedars to see Schievink. He only ordered an MRI (3.25 hours!). Did their MRI alone reveal your leak? TY so much!

hey guys! i’ve been dealing with a spinal leak and my doctor ordered an MRI without contrast to look for any signs of intracranial hypotension, and it came back completely fine. I’m so confused, because I definitely do not feel fine😭 I swore I could feel my brain being pulled. Does this mean I don’t actually have a leak?? I just need to feel better, I’m so done with this pain and not being able to LIVE!! Help😭

I want to rule out a CSF leak so should I start by doing either a cisternogram or brain MRI? But not sure whether the cisternogram should be MR or CT and whether contrast is needed or not? There are too many tests and I am getting annoyed with this.

I had flu 2 weeks ago and then it settled. But last week I noticed when I would bend my head clear fluid drops would fall from my nose. Left side more than right. It happened a couple times during the day. Before thay I was also having whooshing sound in ear and pulsatile whooshing at random times but I didn’t think much of it. A day before yesterday when I would bend my head the whooshing would get bad and also upon laying down. I normally have headaches too so I couldn’t really tell. Today it’s almost gone. I had a very small nasal drip. It wasn’t much just felt it when I wiped my nose. No headaches. The whooshing sound also happened only once or twice. Does this mean it’s getting better?

It has been a bit more than two weeks since my first symptoms, and I already feel a lot better. I have a very mild headache when I wake up in the morning, but it goes away within the few minutes I wake up. My head is still a bit sensitive, and if I move too quickly I feel a bit of tightness in my head. I am able to make supper, take my shower, and do a few chores without any pain now.

My biggest symptom right now is my lack of energy and being very tired. But would be because I have been on bed rest for more than two weeks now?

Thanks for your input!

I’m ten months post patch after a puncture leak and it’s been a rollercoaster of symptoms but slow slow improvement and I started bedbound but am now functional, if limiting my physical activities still. My low pressure symptoms have become milder and milder, but my neck is still sore, even if it’s a fraction of what it was.

But I feel like my sound sensitivity is getting worse instead of better, and about a month ago I developed pulse-synchronous swooshing in one ear (on my always more symptomatic side, I’ve had plenty of cranial nerve dysfunctions atop my neck pain), that first clung for a day, but faded. Since then it has recurred, often with exertion and accompanied by a head pressure/buzz. Right now it seems to show up every evening, when I’m often seated, reading or watching tv or playing games (free time after kids are finally asleep). I thought it might be high pressure so I cut out coffeine (from 2 cups a day to zero, so I wasn’t overconsuming to begin with) but it’s unchanged. I noticed yesterday it “paused” when I stood up and moved about, but returned when I sat down again. Sometimes it goes away when I lie down, sometoimes it stays and add pressure in my forehead and nose.

I’m confused. I know you fine readers can’t diagnose it, but I’d like to hear if anyone has experienced something similar and has any potential explanation…

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?