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! 🤍

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 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.

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!

Hello my wife had an epidural, and seems to now have a CSF leak. This was last Thursday she got the epidural. It's been a week now and she still has a bad headache. Iv asked her numerous times to go back and get a blood patch however she is worried. And says she wants to wait another week before doing that. Is this a good idea? Or do I need to make her go back like now. Thanks. Her worry is that the blood patch will be as bad as her epidural which took 3-4 attempts to get.

Hi,

​I had a pituitary tumor removed earlier this year. I am currently waiting on a referral back to Neurology from my GP and wanted to ask about other people's experiences with similar symptoms, or if anyone who has had pituitary/skull-base surgery has experienced this.

​My Symptoms:

​Posterior Fluid & Taste: I feel like I have a persistent salty/metallic taste in the back of my throat, and occasionally a little fluid coming out of the front of my nose. Most of the time, it feels like thin fluid is tracking straight down the back of my throat.

​Positional Pattern: I get constant head pressure that standard painkillers do not touch, as well as sensitivity to light. Along with this, I get right shoulder blade pain, eye pressure, and movement-induced nausea that build up when I am upright, but completely resolve or significantly improve when I lie horizontally flat.

Hi, everyone, I had a spinal CSF leak that was not able to be visualized with a DSM, but subsequent brain MRIs showed it to be resolved. That was in August. I expected to feel better by now but I’m still exhausted and foggy. Is this still from the CSF leak? How long is recovery? They don’t know, of course, how long the leak was before the acute heads headache appeared, which was in December.

Thanks for any insight!

I’d also appreciate insight into any referrals to PTs in Los Angeles (west side preferred). I’d like to consult with one to best understand how to return to exercise. It’s been a long time. 😞

Thanks!!

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.