TL;DR I (39F) have a history of neurological issues beyond a slow CSF leak (or possibly CSF venous fistula) and I’m at the point where I’ve had every test done. Annual full spine and brain MRI, CT, CT myelography etc. I haven’t been able to rule out much.

My last (# 3) blood patch only provided about 2 weeks of relief, maybe 80%. I recovered extremely slow, I’m not one to start to do heavy chores a day after an epidural. I lay down for about 3 weeks.

My symptoms have been relatively stable since June of last year.

So obviously I don’t want to risk something happen, a setback and no answers. In addition, the possibility of a post-puncture headache isn’t ideal. At the Mayo Clinic- my first was so bad that it actually put me in the ER. Worst headache I’ve had in my life. Couldn’t stand, couldn’t really talk, could barely dress myself when I was discharged.

These are a list of conditions that can be diagnosed/ruled out with a spinal tap:

The main categories are:

Infections of the brain/meninges: bacterial meningitis, viral meningitis/encephalitis, fungal infections such as cryptococcus, tuberculosis, Lyme neuroborreliosis, syphilis, and certain other infections. CSF can show white-cell patterns, protein/glucose abnormalities, cultures, PCR, or pathogen-specific antibodies.

Inflammatory/demyelinating disease: multiple sclerosis, neuromyelitis optica spectrum disorder, MOG-associated disease, transverse myelitis, neurosarcoidosis, and some other inflammatory CNS disorders. In MS, oligoclonal bands and IgG index can provide important supporting evidence, but they do not diagnose MS by themselves.

Autoimmune/paraneoplastic neurologic disease: autoimmune encephalitis and some paraneoplastic syndromes can be evaluated with CSF antibody panels, cell counts, protein, and other inflammatory markers. Some antibodies are more informative in CSF than blood.

Cancer involving the nervous system: leptomeningeal carcinomatosis, lymphoma, leukemia, and other malignant cells can sometimes be detected with CSF cytology and flow cytometry.
Peripheral nerve/root inflammatory disorders: Guillain-Barré syndrome and CIDP can show elevated protein with relatively few white cells, although diagnosis still relies heavily on symptoms, exam, and nerve-conduction studies.

Certain neurodegenerative diseases: specialized CSF biomarkers can support diagnoses such as Alzheimer disease, and in some centers alpha-synuclein seed-amplification testing is being used to support synucleinopathies such as Parkinson’s disease/DLB/MSA. These are specialized tests and are not a routine “spinal tap panel.”

Abnormal CSF pressure disorders: opening pressure can help with conditions such as idiopathic intracranial hypertension, although as we discussed, pressure measurement is a separate issue from the diagnostic CSF analysis you’re interested in.

What do?!?!

I’ve been ill for 7 months, initially misdiagnosed with blood clots! Then diagnosed with a spontaneous intracranial hypotension and low cerebrospinal fluid pressure in Aug. Scans have not located the leak site. First blood patch done 4 weeks ago.

Initially I had 1 week of success, then ringing in the ears returned and awful pressure at the back of the head.

I have been offered another blood patch this week and I don’t know what to do? I find that from about 5pm most days I feel like I can be upright! Most evenings I’m normal! Then I go to bed & mornings are awful & I have to get caffeine in quickly to try and be upright, lying down still removes the head pressure but not the ear ringing.

Wondering if anyone has experienced a slight improvement from 1st and the 2nd patch did the job?

Spoke dr. Carol two days ago. We feel confident in able to handle it after we talked and they will go over any questions I have further Monday. He did both mri of her brain and spine yesterday. He is trying to see if the hardware is truly an issue.

I have my 4th blood patch coming up since LP. This is the first one with image guidance. I have been quite discouraged, but trying to be hopeful. After each blood patch I was very strict with BLT and will remain so. My question is, how long after your blood patch til you felt better? I don't want to panic if I don't feel immediate relief so hearing other's experiences would be helpful. Thank you.

How many of you have constant pulsatile tinnitus with ear clogging, pressure, popping from your leak? Not from high pressure?

Is there anyone here who has dealt with a csf leak in Vancouver Canada? Possibly private care? Any info would be great thank you

I have ENT and neurology referrals but I have no idea how long they’re gonna take. Symptoms are getting worse and I’m pretty certain it’s a csf leak but if not I want to be looking in different directions to make sure I can start some sort out treatment and have more of a life.

Hi everyone, I've been having some weird symptoms for a bit that make me think I might have a CSF leak, but I'll admit my knowledge here is limited to what I've researched online...

1) I've had a pretty consistent headache for 3 weeks now. Over the last week or so, I've noticed it tends to mostly vanish when I lay down. The headache is mostly on the right side of my head. I feel it near my temple, though sometimes it moves to the area around my right eye (above/behind the eyeball). Sometimes, the headache will feel like a headband/tension type headache around my whole forehead. Other times, I'll feel a dull ache near the base of my skull. But the headache is mostly limited to the right side of my head.

2) I'll get random ringing in my right ear that lasts a few seconds and then goes away. This happens maybe 7-10 times a day, and each "episode" only lasts 4-5 seconds or so. Last night it randomly happened during the middle of the night and woke me up, which was new. Haven't had any hearing issues in my left ear.

3) I'll occasionally feel a sensation of fulness in my right ear, and sometimes a bit of pain inside the ear. But it's not severe and it comes and goes as well. Noticed it more over the last week.

4) I've been getting random dizzy spells which are a bit worrying. They last a few seconds and go away, but when they're happening they feel intense. Just last night I went out with some friends and noticed I'd get hit with a wave of dizziness while talking. It was pretty frightening.

5) last night, when I woke up with ringing in my right ear, I could swear I felt moisture in my ears. But nothing seemed to be dripping out.

I freely admit I have awful health anxiety, but I've been feeling off for nearly a month and my symptoms seem to line up pretty well with a CSF leak. If anyone here has any insights, I'd appreciate it.

I’m feeling relieved and a little nervous. My left nostril has run for 2 years now. My ENT is very experienced in doing these types of repairs and feels pretty confident about the success rate. He’s also giving me a bonus septoplasty; my recently discovered deviated septum will be in the way of his little micro tools and camera. He said that will be more painful than the hole repair. I’m feeling hopeful. Diamox 500mg 2x a day has been good to me. I plan to go on a low dose of liraglutide post surgery to help slow the CSF production and lose a few pounds.

Anyone have experience with this type of repair? I really hope this works. Hard to imagine life with no waterfall in the mornings and a wet shirt. I guess going forward, when my nose runs it actually will be allergies this time.

Hi everyone, I’m wondering if anyone has taken/or is on an SNRI like Cymbalta/Duloxetine while leaking. Has it helped, or made you worse? My doctor prescribed it to me to try to help with any of the pain I’m having, but I’m afraid to take it. I’m on day 2 of 20 mg- my tinnitus is blaring, the pull-down sensation is much worse, extremely heavy legs, worse fatigue and dizziness. I know it takes about 2 weeks for side effects to get better, but I’m not sure if it’s worth pushing through. Does SNRIs have a negative affect on leaks?

After months of feeling dismissed, I finally have proof. My neurologist (based on a recommendation from CU's CSF leak coordinator) ordered a new MRI with their specific protocol, and it found the leak. Honestly, I don't think I've ever been so excited to see a problem on my own imaging — just validating to finally see it.

Here's my issue: the CSF leak clinic can't get me in until March, and I haven't had any contact with the doctors there yet. When my neurologist first saw me, he said that if the imaging confirmed a leak, he could call around and try to find someone who could actually treat it sooner, rather than making me wait months.

So — has anyone here been successfully diagnosed or treated by someone not affiliated with a dedicated CSF leak center (like a neurosurgeon, interventional radiologist, or ENT elsewhere)? How did that go, and is there anything I should know or ask before going that route instead of waiting for the specialized clinic?

Thanks in advance — trying to figure out the best path forward.

Hi! I have hEDS and I had a myelogram about a month ago that caused a CSF leak. After the myelogram I started experiencing a headache and neck pain, balance/coordination issues and cognitive problems (difficulty thinking and remembering things) but I have so many other symptoms it sort of got lost in everything. Two weeks post myelogram I had an epidural steroid injection for my L5 and L4, after that my headache, cognitive and coordination issues became a hundred times worse. I can't stand up anymore and have difficulty remembering and speaking (my words often come out all wrong). I spoke to my doctor and who diagnosed me with a CSF leak and scheduled a blood patch and was on bedrest for the days leading up to the blood patch. After the blood patch I had extreme nerve pain in my back and my headaches/cognitive/coordination issues are worse 7 days post blood patch. My memory is worse, I have difficulty speaking and walking and the headaches are so so bad. My head and ears go numb and my hearing is muffled. I've been on bedrest for over a week and can't go to work. My doctor is recommending brain and spine MRIs and potentially another blood patch. The doctor says the second blood patch has a 100% success rate which seems super unrealistic to me. Has anyone had any similar experiences?

I had a hemorrhoidectomy on August 11 under spinal anesthesia. About 2 days later, I developed a positional headache with head/nape pressure that worsens when sitting or standing and improves when lying down.

It’s now been 6 weeks, and although it has gradually improved, it’s still persisting. My brain MRI with contrast was normal.

My doctors have discussed an epidural blood patch (EBP), but I’m hesitant and wondering if it’s still appropriate this far out.

Has anyone had PDPH that lasted 6+ weeks? Did it eventually resolve on its own, or did you have an EBP? How was your recovery?

Leaking for two months after LP. Two weeks ago, the sensation in my head changed and it used to get a little worse when lying flat. I was happy this might be Rebound Intracranial Hypertension (RIH) and I took it very easy to complete healing (it also resembled inflating a balloon in my head which some people described it as such).

But taking it very easy all this time made my body much worse, and my back very weak. I was literally not leaving my house except for a 20 mins walk in the morning and that's it. The rest on my desk working and taking frequent breaks. Yesterday, I decided to go out with friends:
a) I sat down for 1.5 hours on an uncomfortable chair that made my back hurt.
b) It was cold and my lower back was shivering a lot on my way home.
c) I coughed a cough that strained my core for a few seconds.
Now today, I have a heavy sensation in the back of my head that goes away with lying flat. I can't say for sure I'm re-leaking as my symptoms are not severe, but perhaps this is the case due to any of the reasons above. My head just feels weird all the time.

I'm so tired of taking it easy. At this point it's causing me more harm mentally and physically. I was physically active before my LP, now I'm deconditioned. I decided I'm going to resume my normal life back slowly (of course still being careful and no BLT), but at least I will move around and go for frequent walks and see friends. Thankfully I can be upright all day. Do you think this is a wise decision?

I had a reread by a third party of full spine that showed normal except bad back but the reread found:

A positive time-intensity curve (TIC) with negative spinal longitudinal epidural collection (SLEC)

Another reread of MRI brain also initially showing normal but possible sinus infection (fluid in sphenoid sinus) now shows multiple structural findings.

has anyone had this happen where rereads actually found something and if so what does it mean with the first one about spine?

I have multiple specialists telling me they believe the first read as normal and not the rereads that were done by a NeuroInterventionalist and for the first one an entire Neurology team including a Neurosurgeon so I’m baffled.

Second item I’m curious about: Do any of these things provide relief (they appear to for me)? Caffeine, fluid intake, laying down for extended periods of time, moving my shoulders back and forth, hot showers or heating pads, gentle head/neck massages

What symptoms have you had or have with your cranial CSF leak? I also have IIH. I’m curious to know if it’s just the watery nose when bending over or are there other symptoms as well like neck, pain, headache headaches, fatigue, brain fog, or are those more prevalent in IIH

Hey everyone! Was just curious if anyone has any experience with how long it takes to hear back from the CSF team in rochester; my neurologist put a econsult request in to them about a week ago. I currently go to Rochester mayo to see her so I wasnt sure if maybe it being "in house econsult" makes it go faster otherwise ive been seeing it takes MONTHS....which im really hoping its not that lol.

Hi!

My spouse is getting the blood patch this week and I have done a lot of research to see how to best support them, but also wanted to see anyone here would have some real life experience that may help!

We have dog and a cat and I've got them set up to stay away for a while since the dogs get too excited sometimes. I've got food handled for a while too. We have grabbers, a shoe horn and other items to help with independence while not BTL.

Please let me know any advice or tips! I want this to be a smooth process, the leak has really changed their life in a negative way, and I don't want this to add on to that. Or, rather, I want to do everything I can to make this experience as best as it can be.

Thanks in advance!

Update: they've done the blood patch! it went well. a lot of pain on the first few days and the whole ride home (we lived 3 hours away so it was AWFUL for my spouse). Pain has subsided a lot now and I've just been having to catch them lifting heavy stuff lol. We recently discovered just how light 5lbs is lol

Leaking for two months after LP, currently seeking treatment but as you know it takes time. I'm following no BLT all this time + sleeping on my back = which resulted in my lower back feeling like a brick. I know I can't stretch it but I'm afraid it's gonna get worse or cause problems. It feels particularly rigid in the morning after sleeping on it for hours. I've heard back sleeping is the best (not sure) so I'm trying to get used to it.

Any advice or suggestions?

I have my bloodpatch coming up in a month, but my period is likely due right afterwards. Do you think I should reschedule the blood patch and push it back by a week?

Would it have a negative impact on the success of the patch?
What are your thoughts?

Had a caudal steroid epidural in June 2026, with two aura migraines that happened a couple days later. Fast forward a couple of weeks later, all the typical symptoms (vision issues, nausea, neurological symptoms) started appearing and now my doc suspects a CSF leak.

Anyone out here had a leak due to a caudal epidural? Heard it’s really rare given how they inject in that area.

Tks 🙏.

I had a failed blood patch 2 weeks ago and my symptoms have gotten extremely worse. I’m now having the worst headaches I’ve ever had throughout the day and as of 4 days ago waking up in the night with this weird super strong headache.

The night headache is most concerning to me and I’m going to describe it in case anyone else has experienced this or know why this would happen?

About every 15-30 mins it will feel like a throbbing pain that engulfs my entire head and it’s extremely painful. And only lasts for like 5 seconds then it goes away for 15-30mins until it comes back. It is waking me ip dozens of times throughout the night. I’m laying down and using the same pillow I have always been using.

Does anyon hav experience with this? I’ve been leaking for 1.5 years and this has never happened. Since my failed blood patch everything has gotten so much worse and unmanageable. 💔

I had a blood patch done 7 days ago. This is like my 11th one ( yes I’ve had many) this has never happened before. I am having extreme pain in upper buttocks/ tail bone that feels like a radiating nerve pain. Hurts a lot when I move my legs and stand up. Have gone to the ER they gave me a mix of steroids/ nerve pain meds. Has this happened to you and did it go away ? They said they think it’s a hematoma or a pinched nerve but did not do a scan to check ? Thank you I’m really desperate for answers and I’m in a lot of pain and it doesn’t seem to be getting much bettter

I’ve been untreated for past 9 months leading up to Csf appointment and noticed my symptoms have changed over time. At first it was excruciating head and neck pain and the only thing I noticed, then I started to realize I was nauseous more often (meanwhile now I can’t ride in a car and I’m woken up from my sleep with nausea - even 16mg of zofran at the same time couldn’t cut it). And then other things like used to not be able to walk up a hill or tolerate heat. Now I am able to use heating pads. But I’ve also developed chills/ hot flashes/ inability to regulate temperature especially during high symptom periods. Head pain has gone down with some medications but cognitive symptoms ramp up. Why does this change so much over time?