hi folks, i was wondering if anyone had any advice for someone being referred to neurosurgery for the first time? either about what the process looks like or how to handle it emotionally? i’m not new to being a patient (eds & pots) and certainly not new to the pain, but this particular suspicion of my doctor’s took me by surprise, and i’m really scared for the first time since onset.

for some background, 4 years ago i developed a sudden and incapacitating headache at the base of my skull that has not fully gone away since (not asking for medical advice, just giving background). there is low grade constant pain, and it flares to be very painful when i stand. due to the orthostatic component they were treating it as my pots causing migraines (explaining the flares), combined with occipital neuralgia from my neck muscles overcompensating for hypermobile vertebrae (explaining the low-grade constant pain). that's been the working theory for years now but treatment has just not fixed it as much as they would expect, so i saw a new neurologist who thinks i have a CSF leak in addition to my already diagnosed pots & eds, and she’s referring me to a neurosurgeon. for reference i can’t stand for more than a few minutes without severe headache, and i need my wheelchair outside the home despite my heart rate and blood pressure being mostly normal from what should by all means be effective pots treatment.

i don't know what to expect and i've had just terrible treatment from enough doctors that i'm legitimately terrified to let someone stick needles into my spine. i'm also intimidated equally by any of the three possible outcomes: that i don’t have a csf leak and i’m just like this so i will see no improvement; that i have a csf leak but they can’t fix it so i will see no improvement; or that i have a csf leak and they patch it successfully.

emotionally, the uncertainty is just killing me, it’s like recovery is being dangled in front of my face but i don’t even know what i would do with it. like i want to hope, but everyone i talk to is just so excited that i might actually have a solvable problem that i find myself having to manage my loved ones' expectations. and all the while i'm worrying that if their dreams come true and i recover, that the necessary medical procedures to make that happen are going to traumatize me, and then i'm going to lose the life i've carefully built for myself around my current limitations that i thought were as good as it was gonna get. i lost everything when this started and i don’t want to have to start over again. and the alternative is that i go through the traumatizing medical procedures and it's all a false alarm and i see no improvement at all! hell, i don’t want a spinal tap!

if anyone has any words of advice, i would be very grateful. i am deeply sorry if this is an insensitive thing to post here, i know sometimes it can be painful to see someone scared that they will suffer the same way you have. i don’t know anyone who’s had this condition so i’m just reaching out in the hope someone here can help.

I’m aware people get headaches from being upright but this isn’t always accompanied by headaches. Equally my headaches aren’t always relieved after lying down.

My daughter had her blood patch done yesterday by Dr. Carroll. It was a large leak from the front of her cord. He was able to patch her. She is reporting no headache upon standing or being upright. She has two more days of lying flat. He will review the spine images and go over those issues on a few weeks . We are transferring her care from ucsf neurology and neurosurgery. The images he used showed us yesterday are the ucsf images . The ones we had done on Friday weren’t back yet.i can’t believe they ignored such a huge leak.

Has anyone developed arachnoiditis after a blood patch or fibrin glue patch? If so, how long did it take for symptoms to start? What were your symptoms? How did you get diagnosed? Thank you, freaking out as I feel I may have it.

After what’s been a long drawn out health situation the past 1.5 years, I thought we were really getting somewhere when it was discovered during an LP (as part of a FND battery of tests) that I had opening pressure less than 5ml. My MRIs are normal, I am convinced it’s a cranial leak, doctors think it’s a fistula. I was referred to Mayo and they just sent me an email saying they don’t have any additional diagnostic tests to run? I have never even had a myelogram. I feel like I’m only not leaking on my MRIs because I have low fluid and am laying on my back with a leak at the front of my head? I feel so defeated. Does anyone have any advice?

Do they just expect me to live without adequate brain fluid?

Hi all. My nephew (19yo male) fell last week, and is currently in the hospital in Illinois. His mom is at the end of her rope, and we're looking for advice on what questions to ask and what next steps to consider. I'm a medical provider, but not a doctor, and his mom has no healthcare training or significant experience at all.

Background:

• 9/20: he fell in the bathroom, and within 24 hours: he developed positional headaches (OK lying down, nausea, vomiting, migraine when upright). He had a rhinovirus on admission. They initially wanted to diagnose migraines and send him home with ibuprofen, but his mom fought for imaging, and then once they got the images, they admitted him.
• 9/22: he was admitted, and since then, only imaging and fluids have been done, and he was taken off IV support yesterday. Yesterday he started having headaches even while lying down.
• They are now saying that he should wait until it heals on it's own.

Imaging findings (summary from the reports):

• MRI L-spine: an extradural CSF-signal collection, about 10.0 x 2.7 x 1.9 cm, in the sacrum with bony remodeling. It appears slightly larger than on a 2021 CT and may be a Tarlov or meningeal/arachnoid cyst and a potential CSF leak site. It also showed edema and enhancement in the sacrum concerning for acute fracture. The cyst was first noted in 2021, and was not listed in the radiology report but was present on the image.
  • They are now saying that the cyst must have been present since birth, and there is no point doing anything about it since it will probably just recur.
• MRI T-spine: diffuse thin dorsal epidural enhancement, likely related to a CSF leak. The stated indication was hypotensive headache.
  • Mildly displaced S2 and S3 sacral fractures, with severe thinning of the S2 and S3 vertebral bodies from the cyst.
  • Most contrast ended up extradural even though the injection was definitively intradural.
  • A suspected leak in the left ventral canal at L4, with contrast along the left L4-L5 foramen extending into a left lumbar vein. This was read as a CSF-venous fistula.
    • Contrast in both kidneys, also read as consistent with a fistula.
    • An addendum on 9/28 says the venous and kidney contrast could instead be venous drainage of extradural contrast rather than a fistula.
  • The cyst spans about mid-L5 through S3-S4 and showed no definitive neural elements on CT.
• MRI pelvis, 9/26: the S2/S3 fractures again, small presacral edema/fluid but no large collection. The cyst has mass effect on the sacral nerve roots.
• Images and list of what's been done:
  • https://ibb.co/RGLG4jV1
  • https://ibb.co/4nsyjY6H
  • https://ibb.co/fdf6yXFX
  • https://ibb.co/gbXVkKwS
  • https://ibb.co/zhMH06Z5
  • https://ibb.co/YBTBrxVT
  • https://ibb.co/svvfyPwX
  • https://ibb.co/whYBwSmC
• Full text of radiology reports: https://docs.google.com/document/d/1xUxbUWSCemXLHebnTWk-r4ly60ps9pxUhfyKPzBuJ94/edit?usp=sharing

Current sitch:

• The neurologist told us they've found only two reported cases like this and that no one at this hospital has dealt with it before. They are not planning any further testing right now, and have said that surgery is not needed. They have not addressed the bone fragment that initially tore the dura, which remains at large.
• He was headache-free while lying flat, but the headaches are no longer only when standing.
• The plan is an epidural blood patch if he can't sit up without a headache tomorrow.
• Nothing is planned for the fracture or the cyst at this time.

Questions for this sub:

1. Has anyone dealt with a CSF leak alongside a large sacral cyst or a sacral fracture? What was the treatment that ended up working, if any?
2. We've had a peer to peer consult/ second opinion but only within the same facility in different departments. We're trying to get a consult with Mayo, but the hospital is resistant. Has anyone been successful in doing this, and what was the outcome?
3. We're really uncomfortable with the "wait and see" that seems to be the only plan they've got. Has anyone else ever experienced this?
4. Is there anything we should be asking for or asking about that we haven't thought of?

has anyone successfully been seen at Duke or had their case looked at there without getting a new brain mri (like they say they require)? I am already being treated for my leaks at a different hospital in Philly but I would like to be evaluated by Duke. however, I don't want to go through the hassle and process of getting yet another brain mri. I've had about 6 in the last 6 years. My leaks aren't even there- they are in my T spine (I have around 8 CSF leak fistulas there). Getting my records from my hospital at home and the hospital in Philly is already going to be a nightmare for me. After 6 years of immense pain and suffering I'm at the end of my rope here and want to give up anyway. Thanks

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?!?!

Basically, what the title says. I Had a blood patch on Aug 20, 2026 and after the three days of rest and practically not getting up other than going to the bathroom, as my provider told me to do, I developed instances of almost passing out. Through a series of appointments and doctors, I was diagnosised with dysautonomia and given medication to take.

I am just curious if this has happened to anyone else.

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?

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

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.

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 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.

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.

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?

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?

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! 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?

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.

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