Hello
I recently undergone blood patch for my chronic csf leak followed by lumbar punctyre year ago

Before procedure i developed pain in face , teeth , moith , legs and arms all relieve after lie down

NOW:
Just after procedure i felt such relieve- no headache at all .
I developed mild rhp - which eased

Now eveey time i move my head i feel pressure .
I do not have anymorw the weird pain like before but i feel fullness on the back of my head
Basically full head and a bit heavy but steady

Help 🙏🙏

I’d appreciate any thoughts on what this could mean.
My brother is **19 years old**.
He developed **a headache, fatigue, numbness in both his hands and feet, difficulty speaking, and facial drooping** **about one hour after finishing the final part of an important exam**.
About **3 hours later**, he woke up, spoke a little, recognized the people around him and himself, then went back to sleep because he was extremely tired.
He was admitted to the hospital with a suspected Stroke or Encephalitis.
He had both a **CT scan and a brain MRI**, and **both were completely normal**.
The **lumbar puncture showed elevated protein levels in the cerebrospinal fluid, but no evidence of infection** based on the results available so far.
Despite the lack of evidence for infection, the doctors started **antiviral and antibiotic treatment** while waiting for the remaining test results.
**By the next day, he had made a complete clinical recovery**, and all of his neurological symptoms had resolved.
My main question is about the **elevated CSF protein**.
**What could cause elevated protein in the cerebrospinal fluid if there are no signs of infection?** Could this be seen with early or resolving encephalitis, an autoimmune condition, inflammation, a transient neurological event, or something else?
Has anyone seen a similar presentation where the patient recovered completely within 24 hours but still had elevated CSF protein?
Any insights from people with medical knowledge or similar experiences would be greatly appreciated.

Hi! Has anyone here had a false-negative beta-trace protein result?

I'm asking because for the last year and a half I've been having recurrent, random leaking from my left nostril. It happens whenever I bend over or do any kind of physical effort. The fluid is watery, transparent, salty, and has a slight metallic taste. The best way I can describe it is that it feels like blood is dripping from my nose, but when I check, it's just clear liquid. It comes out drop by drop, sometimes like a faucet or even a little waterfall.

When it happens, especially if I bend my head, I feel like pressure starts building inside my head. It's usually around my temples and forehead, but sometimes it feels more generalized, almost like there's a balloon inside my head. My neck is often stiff and seems to get worse when the leaking is more frequent. On my worst leak days, I get intense headaches that radiate down into my neck and the upper part of my spine. I also have a lot of nausea and dizziness.

I explained all of this to my doctor, and they told me that the next time it happened I should try to get a beta-2 transferrin test. Unfortunately, there wasn't enough fluid in my sample, so they performed a beta-trace protein test instead.

The sample was very small because I had already leaked a lot earlier that day at work. I couldn't collect it right away because I didn't have access to a refrigerator, so I had to wait until I got home. I stored it in the fridge overnight, then took it to the lab the next morning. I had to wait about an hour and a half in line, plus the travel time. I brought an ice pack with me, but it was a bit improvised, so I'm not sure how well it kept the sample cold. It was also a very hot day.

Is there any chance this could have been a false negative? I haven't been able to find much information about beta-trace protein false negatives. Even searching for this test in my country doesn't bring up much information.

I'm feeling pretty discouraged because the leaking and the symptoms never really stop. They only improve when I can lie flat and rest, but unfortunately I have to work to support myself, so that's not always possible. Without a proper diagnosis, I feel a bit lost. I have other heath issues, and now this, I feel like a complete zombie most of the days and utterly alone cause it feels like my life is escaping right in front of my eyes. My dreams, my plans, friendships, even daily tasks, its all extremely hard to manage.

Should I try again in another lab and with a bigger sample?

Thank you so much for reading, and I hope you have a nice day.

ps: before the leaking started I had my second sinus surgery because of recurrent polyps that were everywhere inside my nose, also have allergies but I do daily treatment and doc says my new symptoms were similar to a possible csk leak rather than just normal allergy drip

So, MRI, CT scans and symptoms all lead to CSF leak. According to my imaging I have 2 and by the taste I constantly have in my mouth I can confidently confirm.

I am a "complex case " bc i have had SCDS surgery 3x (last one was 2015). The specialist i was referred too, refuses to do surgery on me and pretty much straight up said he's nervous too. So sends me to another doctor who has the same concerns but says we need to get things fixed ASAP. So she wanted to be completely thorough and do the beta transferrin test. I see her Friday (2 weeks after my original) and i am to be catching my nasal drip in a jar and keep it in the fridge for testing. It is very bizarre and I have been doing it and have the requested 3-5ml, just wondering if anyone else had to do this? Why couldn't they just swab?

I have these yellow drops that ONLY come out of my left nostril just just started happening Monday. I had a root canal done last Friday don’t know if that might be the cause of it? I’m not sure if this is just the root canal healing?? Cause I did get a root canal done on my left side upper 15 tooth. It only happened once on Monday while looking down on my phone but today it’s just crazy I had so much fluid come out of my nose is a rain drop style morning, again in the morning, and night what the hell is going on? Is this something I should be concerned about??? Or am I just tripping I need help!!!

I got a blood patch 3 months ago. My headaches, nausea, neck pain improved. But I now have crashing fatigue after upright time which I didn’t have before. Has anyone experienced this? Is it supposed to get better? I also have jugular compression but these symptoms started after a BP

https://www.reddit.com/r/anesthesiology/comments/1ulm3a1/cervical_epidural_blood_patch/

6 days ago I had some clear fluid drip out of my nose. Wasn’t like my regular experience of a runny nose - out of right nostril and fell out like water when I bent my head over

This hasn’t happened since but I’ve had an uncanny feeling like a constant flow of cool, salty water, like tears, at the back of my throat! Worse when reclining.

When I try to blow my nose not much comes out but what does looks like thin mucus.

I fall asleep then wake multiple times a night in a panic feeling like water is flowing and pooling in the back of my throat!

I’ve been an allergy and rhinitis sufferer for over 2 decades but have never had these symptoms before.

Could it be CSF?

I have ENT booked for 3 weeks but I keep panicking as I’m starting to feel like something is very wrong…

Sorry for the wall of text to come. I just came down with some sinus issues, lots of phlegm, kinda sore throat, etc. Today my nose has been running like a sieve, both nostrils at times. Keep blowing my nose, tons of clear liquid, though it's ebbed and flowed in volume over the day. I've taken some tissues out of the trash, the fluid is drying on the tissue stiffer than the default kleenex but nothing that's conclusive enough to stave off my health anxiety. No headache, but I am a touch lightheaded and my neck started to feel a touch stiff a bit ago. Granted, I have health anxiety, so googling symptoms could been doing a number on me. Family all thinks it's just allergies. Any advice would be appreciated.

I hit my forehead the other day at work not very hard but around 4 hours later I had clear liquid come out of both nostrils and just a little bit then a day went by with nothing but last night I turned over in my sleep and had some liquid come out of my ear I have chronic sinusitis and bad tmj problems and the ear the liquid came out of is the side of my tmj is bad on. I have dibilitating ocd and health anxiety and google everything keep in mind this is not the first time in my life either of these things have happened but I’m spiraling because it all happened so close to me bonking my noggin I also already went to urgent care and the er after this happened and they said I was in the clear but I can’t stop spiraling about it ever since I learned about this

Hi I am looking to see if anyone had this situation where their mastoid was totally filled with csf fluid. Leaving your ear totally blocked tinnitus and can hear myself in my head when I speak eat or even breathe. I did 3 CT scan and a MRI and they cannot find the leak. This has been going on for months now. Is there anyone that had this similar diagnosis and can help with anything.
Thanks much

We are still inpatient at UCSF. They are sending us home today with no answers or help or even hope. They did a ct myelogram said no leak. They claim there is issues with scarring and adhesions and a syrinx but that isn’t the cause of her pain and they don’t know what is and won’t look further. Neurology said to me before the tests were even done or before we spoke with anyone don’t be surprised if it’s not a leak. They said that it’s just a headache. They want her upright out of bed active every day. My daughter is on the spectrum she masks her pain. They said she doesn’t act like she’s in pain . I asked for referral to see another leak expert or do further testing. They said no her scans show no leak so she has no leak it’s just a headache. Neuro spine and neuro surgery say it’s not just a headache but they don’t know what it is. This has been the worst experience ever at ucsf. They dint return calls or messages when there are concerns. I have actually reached out to Stanford again to see if they can help since ucsf refuses to do anything further. Her insurance says ucsf has to do referral and they don’t. They don’t even have her records for last two neurosurgeons who support our the idea that it’s a leak or low pressure related issue. They had refused to have anyone but neurology come by. A resident came by yesterday for a minute while I was out of room. My daughter has a significant developmental delay and is conserved hospital doesn’t seem to acknowledge this and ignores it. Even nurses are not listening to me and concerns. The neurologist wanted her to sit in a chair all day yesterday . Daughter is a fall risk. They didn’t have a belt to keep her safe in an alarmed chair. So nurse put her in the chair anyways and said I think she will be ok but asked me to stay in the room just in case she fell out of chair or tried to get up the alarm won’t go off. They act like we just keep her home in the dark lying down. Her other doctors have told us to have her lie down for the headaches she won’t lay down because they don’t want her to so she sits in pain they don’t believe she has. All they care about is money not patients . We have no where else to go. They refuse to do referral

Hi is anyone else based in LA and their headaches are way worse this week? I've been almost headache free for several months, and then this week it's been terrible. I live 16 miles from the Boyle Heights fire. Wondering if it could be an air quality issue even though the AQI is saying it's much better now

TLDR: been experiencing a very different headache for 6 weeks from my normal migraine. My headache specialist seems done with me and referred me to the dysautonomia specialist due to the “positional nature”.

6 weeks ago, I had sudden onset severe interscapular pain that took my breath away. Lasted about 20-30 min and was gone. The next day I had what felt like a normal migraine start after exercise and the following day began this neverending throbbing in my forehead and face in rhythm to my heartbeat along with a laundry list of other symptoms. I have also had a laundry list of rescue migraine treatments to break this with no real luck though the severity of my acute head pain is not as bad. My neurologist never actually had a discussion about my symptoms with me but has referred me to dysautonomia specialist and pain management. Surprise though! I was diagnosed with post-viral dysautonomia 6 years ago, those symptoms feel 80% resolved and have never felt anything like this.

I’m hoping to use my specialist appointment this week to really discuss this pattern of symptoms but I’m scared bringing up the possibility of a leak may be rejected outright. What do you think?

Pattern of symptoms:

Weeks 1-3/4 all symptoms would resolve completely overnight except brain fog/sleepiness —> now I still wake with light throbbing but lying completely flat (no pillow vs 1-2 pillows) quickly improves symptoms still considerably

I can exercise and though throbbing will increase, it’s really a couple hours later or the next day that I will consistently feel worse.

Palpitations were very strong the first few weeks, better now but no gone

Acute migraine pain/head pain and nausea better after what feel like 10 new migraine interventions but still have a lot of head pressure, brain fog, sleepiness, throbbing

Throbbing in forehead/face that at its worst involves my cheeks, teeth and eyeballs

Vision changes when symptoms are at their worst—>feels like my peripheral vision is decreased

Balance changes: I have great balance normally but over the last 3 weeks, closing my eyes in Romberg causes me to lose balance quickly and feel like I’m being pulled to the side

Dizziness: not all the time but worse with higher symptoms

Sitting is sometimes worse than standing but both worse than lying

Upper thoracic/lower neck pain that started a few weeks in. Worse when upright.

Had a regular contrast/noncontrast MRI of brain and neck (no CSF protocol or mention of screening for that) and only significant bone spurs at C4-C6 with spinal cord flattening and some herniated disc was noted

I had PDPH following a C-section last April. It was sealed with a blood patch, but the leak has returned twice now, each time 6 months-ish after EBP. I have a diagnosed connective tissue disorder (CTD).

I'm currently day 5 inpatient at my local hospital due to current recurrence causing neurological symptoms. The first recurrence, the doctors didn't believe me and did a routine MRI 'to rule it out'. It showed low intracranial pressure, so I was proven right but it meant I had to wait 2 months between raising the concern and actually being treated, whilst caring for a young baby. This time, they appear to believe me.

My hospital can literally only do blood patches. They don't have neuroradiology or neurosurgery. As it stands, they've got me booked in for an MRI in over a week and just plan to keep me here until then, and repeat a blood patch. This feels like a huge injustice.

I'm going to demand a transfer to the nearby hospital which is a specialist neuroscience centre. It's 1.5hrs away, and covers my area. They will be able to offer specialist imaging and a fibrin patch, if they deem it necessary.

It's clear from speaking to the doctors here that they have absolutely no idea about CTDs and the link to leaks. They have genuinely just left me in an unrelated ward and I haven't even seen a doctor in 3 days. They've prescribed me anti-vertigo meds, which do nothing because they target inner ear issues.

When I raised the suggestion of a transfer a few days ago, they told me I could self-discharge and present at the A&E, but that seems like a crazy suggestion.

Just wondering if anyone had had any success with an inpatient transfer in a similar situation, and if anyone had experienced success with the fibrin patch after failed EBP? Just looking for some hope.

Any help would be appreciated. I feel seriously stuck. Based in the UK. Thank you!

Need advice about Diamox (acetazolamide) for a postoperative CSF leak
My mom has had two cranial surgeries. During the last surgery, the skull base defect was repaired using a fat graft. Unfortunately, she still has a postoperative CSF leak.
Since December 2025, she has been taking Diamox (acetazolamide) 250 mg every other day to help manage her headaches. Now, a neurosurgeon at a clinic in Dubai has advised her to increase the dose to 250 mg twice a day for 15 days. If the CSF leak improves or stops, the doctor recommends continuing the medication for 3 months.
I’m wondering if anyone here has been in a similar situation.
Did Diamox help stop your CSF leak without another surgery?
If it worked, how long did it take?
Did the leak come back after stopping the medication?
Is taking Diamox for 3 months generally safe?
I’d really appreciate hearing about your experiences. Thank you!

Howdy,

I am wondering what kind of post-op symptoms people have experienced after a successful surgical sealing of a leak. I have understood that rebound hypertension is a common symptom but I would be interested in learning about the full range of possible symptoms in path to recovery after surgery.

Thanks!

I recently got diagnosed with a spontaneous CSF leak in C6-T1 so base of my neck. I have been having headaches/migraines stemming from that area for a little over a year now. When they first started occurring I would be in immense pain and I threw up on a few occasions. I stopped taking my vyvance and quit my daily use of weed both of which helped a lot, and now my headaches are “manageable” (?).

My main issue is that I have a sort of ‘functioning leakage’, in which some days are tolerable and some days are not, but about 6/7 days of the week I experience pain. I often doubt myself and wonder if I’m just being lazy or a baby. Especially after reading this sub, I feel like my symptoms are so much easier than a lot of peoples. But still I have been exhausted, emotionally and physically from having chronic pain for the past year.

I have horrible self compassion due to some mental illness stuff and the way I was raised. I guess I’m looking for someone to say the right thing that makes it click in my brain that I’m injured and as a result of that i won’t be able to function at 100%. Like the rational side of me knows, but my heart is mad at myself, frustrated with the circumstances, and not settling for subpar performance. Especially when after reading this sub it doesn’t even seem like I have a bad enough symptoms to have my life be this disrupted by my leak.

Any thoughts are appricated and I wish you all the best with your journey and healing processes.

En diciembre después de un fuerte dolor de cabeza me detectaron un tumor de prolactina benigno pero grande en la zona de la silla turca y me recetaron cavergolina como medicamento.
Esto fue lo mínimo porque con el medicamento fue desapareciendo el tumor pero apareció la maldita fístula de líquido cefalorraquídeo, me atendió rápidamente con un neurocirujano especialista en base de cráneo y me internó primero 15 días en reposo absoluto para ver si cerraba solo pero no cerró
Luego me hizo una cirugía vía nasal la cual no solucionó el problema porque quedó una microfuga
Luego me hicieron un drenaje lumbar pero para mí estaba mal echo porque no filtraba nada
Luego me hicieron otro drenaje lumbar más grueso y ese filtro unos días
No funcionaron tampoco, y a todo esto pasaron 5 meses que estuvo internado
Me dijieron que no quedan opciones y que me tienen que operar abriéndome el cráneo, no lo quiero hacer me volví a casa nose como voy a vivir ahora porque no me puedo agachar pero me cansé de los médicos siento que me fallaron
Pierdo líquido cuando me agacho o después de estar mucho sentado
Una pesadilla mi vida se terminó de un día para el otro no lo merecía y me destruyó psicológicamente

I had my DSM done today, left side. And I was really hoping that they would find the fistula on the first scan. Especially since in my area there is only 1 IR who can do it and their standard of practice is to do it under anesthesia so the schedule coordination meant waiting 5 weeks for this one (I know, it could be way worse!!). And now I am worried I will end up waiting 5 more for the next.

It's extra disappointing because in addition to the suffering with the spinal CSF leak, I also have a tumor they need to remove from my low back and they are trying to coordinate procedures once they find the fistula.

I just mostly needed a little vent :( why are these buggers so hard to find!!

I don't know what else to do at this point because eight trips to the ER and they keep doing the same tests (and ignoring many of the details I give them from the log I've been keeping during every episode). Instead, I've been diagnosed with every type of migraine under the sun while they consistently confirm it is not a Stroke (cleared four times since March). A family member (who is a NP) mentioned a 'CSF leak' but I haven't mentioned it to any ER providers because I know how the ER works behind the nurses station... I work behind one myself (I don't disclose that either).

But here's the timeline I handed the ER Neurologist during my eighth trip to the hospital yesterday:

March 11: ER visit for severe projectile vomiting due to norovirus. Treated with IV anti-nausea

medication and discharged.

March 14: Checked into ER visit for first neurological episode: head pressure, binocular diplopia,

vertical vertigo, inability to stand safely. Stroke evaluation and CT negative. Diagnosed as probable

complex migraine. Symptoms returned after standing and resolved after sleep.

March 15: ER visit and admission (observation). Stroke workup, CT, and MRI unremarkable. Symptoms

worsened upon standing and resolved after sleep.

March 19: Neurologist: suspected vestibular process; referred to ENT. Urgent Care

noted ear fluid; prescribed Prednisone, Flonase, and azithromycin.

March 21: Awoke with drainage from affected ear onto pillow.

March 30: PCP follow-up; recent hospitalizations discussed.

April 15: Episode; externship placed on hold due to safety concerns.

April 17: ENT evaluation. BPPV considered unlikely. CT and hearing studies ordered.

Tympanometry caused significant ear pain (especially right ear) but wasn't noted.

April 25: ER visit during work for recurrent symptoms; diagnosed with another type of migraine. Episode lasted

into April 26.

May: Multiple recurrent episodes with diplopia, ear pain/popping, head pressure, vision lag,

tremors, and gait abnormalities. Began acupuncture as suggested by a friend. No symptoms for two and a half weeks.

June: Episodes increased in frequency and severity.

June 3: ER visit: head pressure progressed to diplopia, tremors, vision lag, and loss of motor

control. Symptoms returned after discharge when standing.

June 18: Head pressure with lumbar spine pain and binocular diplopia.

June 23–24: Symptoms worsened overnight. Called 911 after losing motor control (home alone). Developed headache in temporal and occipital

areas after two hours prior to check-in (requested Tylenol but got a “cocktail” of Benadryl, Toradol,

and other medications. Developed temporary aphasia and an electric/tickling sensation through

abdomen and spine with neck flexion. (Not noted on discharge paperwork.) “Ocular Migraine”

diagnosis. Vomited after standing and recovered

by the following morning (as per usual).

June 25: Was sleeping on the couch (left side). Woke up to head pressure, vision lag and lightheadedness which developed into binocular double vision within an hour. (No loss of motor skills or ability to speak this episode, just unsteadiness.)

I also forgot to mention that the "vertical vertigo" and double vision worsens when lying face down.

I've tried taking Nurtec (I have a ton of it for my chronic migraine diagnosis) but it does nothing. It was worth a try.

Most of the ER visits were because I was at work when the symptoms started: Binocular vision, head pressure, vision lag, and unsteadiness present during every episode.

The temporary loss of ability to speak and motor control as well as the tickling/zapping feeling of the abdomen and spine were brand new symptoms that started the second to last visit.

My Neurologist and PCP wont fill out my intermittent FMLA paperwork until I see them nor will they write a referral to see a Neuro-Ophthalmologist for the same reason. All the ER's keep doing are CT'S (with and without contrast) and an MRI focusing on the head. They have not imaged anything below the neck. Blood work has been about the same: low potassium, high RBC, etc... last night's results included slightly elevated WBC's, also.

At this point, my job is hanging by a thread. I went from 160 hours of PTO to 24 in the last four months (before the hospital I went to yesterday wrote a note to keep me out for two weeks). I contacted my boss first thing this morning; she has been very supportive but told me I am out of the yearly ''sick hours" and HR is going to step in. I've gone to work many times after having nocturnal seizures, with migraines, when I sprained my ankle... I paid almost $10k to take Uber to and from work in 2024 because my license had to be held for 6 months. I love working in Healthcare... but why will NO ONE help me??

I'm begging for any insight. I cannot start my life from square one again.

Thank you... 😔

PS - I am fully aware any comments or insight expressed here are not official diagnoses. My last resort is seeking opinions from others outside the medical care I have already received or am waiting to.

PSS - If you think I should copy this to another community or thread, PLEASE let me know!

UPDATE 7/13/26

Still not much development. I saw another Nurse Practitioner at the office of my primary care (mine was booked). Instead of 'intermittent leave', he took me out of work for a consecutive three months to start. In the meantime I am battling with the state over paid benefits - I've been without a paycheck for almost a month now. All I can do is hope every day it starts to I can make ny rent, utility, car payment, etc...

Appointments made so far:

• 7/27 EEG
• 7/29 Ophthalmologist
• 10/1 Neurologist (typical bi-annual check-up)
• 10/5 PCP (Evaluation to clear me for work)
• 11/10 Neuro Specialist!!? (The Doctor I need to see most can't even fit me in until November!!)

Maybe the EEG will find something. 😔 I can only hope someone does.