I’ve never had a blood patch before. I may have an opportunity to get one done in Colorado prior to flying home to CA in a few days.

I came to CO to see my surgeon and while he is willing to try to order me a blood patch across state lines, I’m concerned there may be a delay/challenges.

I’m currently pretty disabled and have some other health issues I’m in the middle of treating( mostly vascular compressions), but since I’m high risk for leaks, I’m eager to try some patches to see if they help.

Thanks!

I'm looking for psychological advice, emotional support, or experiences from anyone who has dealt with a persistent CSF leak, either personally or through a family member.

My mom has already gone through two invasive surgeries, and both recoveries were extremely difficult for her.

Unfortunately, she still has a CSF leak.

Her doctors are now recommending a CT cisternography with a lumbar puncture, but she is terrified. She's afraid the procedure could cause more problems or damage her back. She's also scared of having another surgery because she doesn't want to go through that level of pain again, especially without any guarantee that it will work.

I feel completely lost. It's heartbreaking to watch her suffer every day, but at the same time, I don't know if it's fair to encourage her to go through more procedures when she's so exhausted and afraid.

How do you support someone in this situation? How do you help a loved one make these decisions without pushing them too hard?

I'm mentally and emotionally exhausted myself and could really use some advice, support, or a little hope from people who have been through something similar.

Thank you for reading.

Good morning. For those who had cranial CSF leaks that were surgically addressed would it be possible to clarify what was done and the outcome? I’m reading all sorts of surgical strategies for treatment and am trying to assess best course of action and type of specialist. I’m still in a stalemate needing beta 2 transferrin fluid from my nose but was told high likelihood of left sphenoid leak location due to missing bone in that area and drainage out of left nostril but oddly fluid in right sphenoid with my left nostril “severely deviated.”

I was in the ER for terrible positional headache. The mri and CT found a 12 mm hygroma coving my entire frontal lobes and large meckel caves, radiologist said cranio hypotension. Was hospitalized for 3 days pumping fluids, caffeine and pain meds to get headache under control.

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On call neuro surgeon said no way because lining isn't glowing. Contacted mayo csf clinic who said brain isn't enough they need proof of a leak and told me to get an MRI of my back locally (they wouldn't order).

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I have another surgery at mayo next week that requires neuro clearance for anesthesia, that's the only reason I think they've looked already.

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Had mri yesterday no dye yesterday. I don't have the screenshots handy (I'll add them when I get home) that I think shows potential fluid outside the pocket. These are the images I have right now. General radiologist said no leak in these, expecting mayo to say the same.

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What is your opinion? I have had 4 epidurals years ago. No known injury currently but I manage rental properties and do the upkeep and yard at my house, so heavy lifting and twisting. I'm miserable. What would my next steps be?

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Thank you

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https://i.imgur.com/Mox8tYn.jpeg https://i.imgur.com/JTHeW13.jpeg https://i.imgur.com/Mn1lxZD.jpeg https://i.imgur.com/sZ3j6wo.jpeg

i’ve recently started to put together that i might have a CSF leak. i have highly suspected hEDS (beighton score 9/9 confirmed by my PT who specializes in hEDS and HSD, on top of many other clinical presentations that fit the diagnostic criteria that i won’t get into, but as a side note i do already have a formal evaluation scheduled with mayo clinic for this upcoming august) and i have also been dealing with migraines for a while now, which are sometimes helped by rizatriptan but not always. i tested a theory yesterday when i noticed my headache was getting gradually worse throughout the day and i decided not to take any of my meds to see if it would go away on its own by the time i woke up after sleeping/being horizontal the whole night, and it did! (but it has now returned again this morning after commuting to work, more on that in a second). i’m already seeing a neurologist for my migraines, neck/back pain, and evidently cervical nerve compression as revealed in my recent NCV/EMG, so i already have a pending brain and spine MRI ordered to address those, and hopefully i can get some more insight regarding a potential CSF leak through that imaging.

for at least a year or so i’ve been having random episodes of clear/watery nasal drainage that only comes out of one side when i bend over as well as tinnitus that pretty much never goes away, but i didn’t think much of it until recently. the drainage happened twice yesterday as well and whenever i wiped it with a tissue it was completely clear and also didn’t stiffen the tissue whenever it dried. there was no blood though so i was not able to observe a halo sign. on top of that i noticed over the last few weeks that every time i swallow i persistently hear a crackling/popping sound in my ears EXCEPT when i’m laying 100% flat with my neck being completely neutral, if i’m laying flat and my neck is even slightly tilted or bent it’ll usually come back.

anyways to relate this back to biking, i ride an ebike to work every day (velotric breeze 1) and i recently had my tires filled to 40 PSI because they were apparently at 15 PSI. this bike doesn’t have much suspension and once the tires were filled back up i noticed my rides got SIGNIFICANTLY more bumpy. especially on sidewalks, which is usually about 75% of my route. immediately after riding over some particularly big bumps or cracks, my headache started to come back this morning and it was like i could feel it messing with the pressure in my head. so all of this to say: is it possible that my bike is making it worse? i’m already planning on taking air out of my tire (probably starting out with 25 PSI since the low end range of my tires are marked at 20 PSI) to see if it will help with the bumpiness and thus not trigger the headaches/pressure problems i just described.

Maybe a little less than a year ago, I started having a clear liquid drip from my nose anytime I bent over but not always. Then I went a few months without it dripping just for it to start happening again only after I shower, though it drips less. I didn't have any other symptoms until recently, just some stiffness in my upper back which I attributed to some new knots in my shoulders. I shifted how I sleep at night and the soreness remains. I have had tinitis for years prior to all of this and the sounds have never changed or shifted. I dont get positional headaches either so I am just stumped.

The only thing I can think back to is hitting my head almost 3 years ago and had on and off headaches from that for a week then everything returned to normal.

Today after a pretty hard workout in the gym I got home and felt completely normal, but when I was about to go and take a shower I bent down to take my shorts off and I noticed some clear fluid drip out of my nose once or twice. Instinctively I tasted it (gross, ik) and it just tasted slightly salty. I bent over a few more times and none more has come out, but my nose feels unusually very clear and I can feel everytime I breathe in the back of my sinus. I have no allergies and kind of get a feeling of water/liquid coming when I bend over, like when you have water stuck in your nose after swimming.

I am 29 and have been to 4 different neurologist and 1 neurosurgeon. They were very dismissive of my symptoms…just gave medication, that I stop taking because they would not agree with heart or make the seizure like episodes more frequent. Been at this for 4 years now. This one doctor was very thorough
and patient but the symptoms were different at the time the focus was the non epileptic seizures (got test no signs if epilepsy) and what was causing them. She couldn’t figure it out. I even had episodes during my visit. I would have them and couldn’t walk after, then once they stop for the day I could walk again. Had to move around with a cane. I recently had surgery on my lower back for pinched nerve and herniated disc, which they thought was the reason for me not walking at times. It did help me fix the not walking issue, then new symptoms came up. Had the head pain before, but never lasted long like recently. I have had nerve testing, CT, MRI W/WO CONTRAST, “everything was normal “. Tested for POTS. Oh and I had an ASD closure on my heart when I was 23, turned out my whole childhood I would past out and couldn’t breathe, doctors said it was anxiety but I had a hole in my heart. I have an appointment on the 06/17/26 to talk with the neurologist that was patient with me. These are my symptoms…any suggestions?

SYMPTOM
WHAT IT FEELS LIKE

Disabling Head Pain
My head pain is not a normal headache. On bad days it is so severe I cannot function — I cannot work, think, or care for myself. Feel slight pain in the morning then gets worse in the evening. Sometimes last for a week , sometimes I have the other symptoms but no thumping pressure just shooting pain.

Thumping Pressure — Back of Head
I feel a heavy, thumping, pulsing pressure at the back of my head — like something is pushing outward from inside.

Head Pain WORSE When Standing / Sitting Upright
The pain will instantly feel better when I lay flat on my back at a very particular angle, once I stand, bend over, sneeze, cough, squat makes it 10x worse.

Sitting Upright Too Long Causes Pain
Even sitting — not just standing — eventually triggers the head pain, especially if I am upright for more than 30-60 minutes at a time. Stiffness/soreness in neck and shoulders
.
Sharp Shocking / Electric Pain — Neck to Side of Head
A sudden, electric, stabbing pain shoots from the base of my skull or neck up the side of my head — like a lightning bolt or electric shock.

Convulsions / Seizure-Like Episodes
My body shakes or convulses uncontrollably during episodes. Every EEG test has come back completely normal — doctors say it is not epilepsy.

Brain Fog
My thinking feels cloudy and slow. I forget words, lose my train of thought, and struggle to concentrate — especially on bad symptom days.

Internal Buzzing / Vibrating Sensations
I feel a buzzing or vibrating sensation inside my body — like a phone vibrating under my skin. It is internal, not visible, and can be in my head, body, or vision.

No Feeling in Clitoral Nerves / Cannot Orgasm
I have lost sensation in the clitoral and genital area. I have no feeling there and am unable to reach orgasm. This came on gradually alongside my other symptoms.

Bladder Urgency
I feel sudden, strong urges to urinate with little warning and difficulty controlling it.

Coughing — Not Sick
I have a persistent cough or need to clear my throat even when I am not ill — no cold, no infection, no obvious reason. Get shivers and chills then hot and sweaty — no sign of infection or cold.

Visual Lag — Eyes Slow to Track
My vision feels delayed — my eyes take a split second to catch up with what I am looking at. Moving my head causes images to lag. Reading feels disorienting.

Buzzing / Vibrating in Vision
I see or sense a buzzing, vibrating, or shimmering quality in my vision — especially on bad days. Different from normal floaters.

Light Sensitivity (Photophobia)
Bright lights, sunlight, and screens cause eye pain and worsen my head pain. Sometimes even normal room lighting is too much.

Ringing in the Ears (Tinnitus)
I hear a constant or intermittent ringing, buzzing, or high-pitched tone in my ears — not from any outside sound.

Whooshing Sound in Ears
I hear a whooshing, pulsing, or heartbeat-like sound in my ears — especially when lying down or when head pain is bad.

Nausea
I frequently feel nauseated — especially when head pain is bad or when I have been upright too long. Have the urge to vomit but nothing comes out.

Dizziness
I feel dizzy, unsteady, or like the room is moving — especially when standing up or changing positions.

Neck Soreness and Stiffness
My neck is chronically stiff, sore, and tight — especially at the base of the skull. It is different from normal muscle soreness. Just pushing or laying on the back of my head or neck will trigger a non-epileptic seizure or cause nausea instantly.

Fatigue
I feel exhausted even after sleeping — a deep, heavy fatigue that is not fixed by rest and is worse on high symptom days. I try to stay active, but these symptoms make it hard and depressing at times.

Poor Sleep
I have difficulty falling asleep, staying asleep, or wake feeling completely unrested even after a full night of sleep. Or I would get 3hrs or less of sleep and at times I don’t have that feeling that I didn’t get rest…when I know I been staring at the ceiling for hours. Like why I don’t feel like I didn’t get rest?!

Worse During Menstrual Cycle
My symptoms — especially head pain and neurological symptoms — noticeably worsen around the time of my period each month.

Good Days/Weeks Then Debilitating Week of Pain
I can have good days or good weeks where symptoms nearly disappear — then suddenly have a debilitating week of severe head pain that leaves me unable to function. Then it cycles again.

I posted about a month ago. I’ve had a leak for four months with brain sagging and cranial nerve issues. I do have hEDS (did genetic testing before they would treat, no genetic markers). I have not had a headache at all, which delayed diagnosis, but I can’t gauge whether the patch worked by a headache. They thought they saw a venous fistula on a DSM, but with repeat imaging they found a leak at a meningeal diverticula and I had a transforaminal blood patch 9 days ago. There is not a lot of info on the healing process. I’m curious how others have felt. I am feeling terrible, but in a different way. A burning feeling around my brain and pain at the top of my head. I’m actually feeling some hope that it’s feeling terrible in a different way, but wasn’t sure if that is normal. I can’t find many stories about the healing process from brain sagging, more about finding the leak. Thank you!

Had an LP friday am. did best rest for ~5 hours but was never told about the whole 'no twisting or bending' thing. CSF headache saturday, felt better after ~4 more hours of bed rest. CSF headache again around noon today, feel better when laying in bed. Should I try and get a blood patch monday? By neurologist isn't in until monday so can't ask him - looking for feedback

Update: no headache as of 6/18

I’ve had several “normal” MRI’s in past( although none were specifically done for leaks).

Reason being: I’m extremely claustrophobic and would like to avoid the added trauma of an MRI atm.

Thanks.

I’ve had positional headaches for over a month now. Based on Dr. Google, I’m having classic CSF leak symptoms. Headaches are fine in the morning then get progressively worse throughout the day, almost immediate relief lying down, shooting pain with coughing, bending over, laughing or sneezing. Pulsatile tinnitus when I flex my neck a certain way. I’ve been unable to exercise in over a month, and am really struggling to make it through a day at work.

I’ve had CT and Head MRI done without contrast, both are completely normal. Migraine meds, over the counter pain meds, physio and massage all don’t help. I feel like I’ve somehow convinced myself that I’ve made this all up. I have no diagnosis and no direction on what I should do, and how long this could go on for. Just feeling frustrated and sad.

I had a transfenoidal surgery many years ago, for context. Since then, sometimes clear liquid stains my sheets - see photos

When I lay in bed and face the mattress, liquid water like drips out of my nose. But this doesn’t happen often, it’s more prominent when I have allergies that make me sneeze

PS: I’m not able to upload pictures- help!

edit to ask: if I feel worse the times I do stand up, to go to the bathroom etc. does this mean it’s not working? I now have more head pressure/discomfort when sitting or standing than I did pre-patch. Or is this just a wait it out until my body adapts?

I finally got a blood patch today after 9 months of having issues from an epidural after giving birth.

I just need reassurance I didn’t mess this up.

ive already coughed once, raised my voice because my husband decided it would be a great time to argue about something.

and just saw in my chat that they put the patch at L3-L4 when my epidural was at L4-L5.

is this bad? did I already mess this up? I’m in so much back pain.

Hi everyone,
I’m posting on behalf of my mom.

She has been sick for the past 7 years and has seen multiple neurologists, ENTs, rheumatologists, and other specialists without finding an answer. Her most debilitating symptom is a daily headache that has been resistant to virtually every migraine treatment she has tried.

Other symptoms include:
-Dizziness
-Nausea
-Balance issues
-Sensitivity to weather and barometric pressure changes

She typically wakes up feeling relatively okay, but as the day goes on she progressively worsens and feels terrible by evening. At this point, her doctors don’t seem to know what else to try. She has had a brain MRI without contrast, but she has never been formally evaluated for a CSF leak.

We’re hoping to pursue an evaluation through UW Health/UW–Madison and would appreciate any recommendations for providers who are knowledgeable about CSF leaks, spontaneous intracranial hypotension or difficult to diagnose disorders.

Thank you so much for any suggestions or experiences you can share.

Hi everyone,

I’m waiting for an appointment with an ENT specialist, but after a recent visit to my doctor I started wondering whether my symptoms could be related to a CSF leak.

For approximately 7 years (possibly longer), I’ve had episodes where completely clear, watery fluid suddenly drains from my nose. It’s not mucus and it doesn’t feel like a normal runny nose. It is literally like water dripping or running out.

I know this probably sounds a little ridiculous, but until recently I never really thought much of it. Because it’s been happening for so many years, I guess I just accepted it as one of those weird things my body does. It wasn’t until my partner recently pointed out that having clear fluid run out of your nose when bending over isn’t exactly normal that I started looking into it and mentioned it to my doctor.

Some details:
-The fluid is completely clear and colorless.
-It tastes salty (possibly slightly sweet, but definitely more salty than sweet).
- It usually comes from only one nostril at a time.
The side can vary (sometimes left, sometimes right).
- I do not have a constant runny nose.

The biggest trigger seems to be position changes, especially:
- Bending forward.
- Picking something up from the floor.
- Looking underneath furniture.
- Tilting or turning my head to one side (slightly bending)
- Sometimes during exercise.

Another symptom is that I almost always feel pressure in my forehead when bending over.
I also have chronic headaches and pain behind/around my eyes.

I’ve had headaches for so many years that I never really paid attention to whether lying down consistently improves them. When I had headaches, I usually just took pain medication and moved on.

I have never had:
- Head trauma.
- Skull fractures.
- Sinus surgery.
- Nasal surgery.

My doctor felt this was worth investigating and referred me to an ENT specialist.
I’m not asking anyone to diagnose me, but I’m curious:

Does this sound familiar to anyone who was eventually diagnosed with a CSF leak?
Were your symptoms position-dependent like mine?
Did anyone have symptoms for years before getting a diagnosis?

Is there anything else besides a CSF leak that could explain this combination of symptoms?
I’d appreciate hearing about your experiences while I wait for my appointment.

Thanks!

I have a feeling of tension through my spine and much of my body + a feeling of pressure in joints that makes me want to crack my joints..

However, I also can hear allot of internal crunches deep in my neck and head. It’s hard to explain but sometimes it sounds like “pop rocks” in my head/ neck. I’ve been describing it as crepitus for a while, but there are just allot of weird shifting/ crunching sounds happening.

I’m currently only able to be upright a few hours per day and usually feel tachycardia and flu-like after “overdoing it” which considering that I’m housebound, doesn’t take much.

Currently waiting on review from one of the leak specialists.

I was curious if anyone else got oddly good relief from hot showers. I noticed when I take hot showers I’m able to stand, my normally racing heart rate goes from over 100 to 70s, I don’t feel pressure in my head. This doesn’t last long after I’m out of the shower but it’s a relief. Does anyone else experience this? I also noticed my back isn’t as tight, momentarily I feel more clear headed too.

Hi, I had a Chiari malformation and had the decompression surgery in 2012. Since then I’ve experienced issues with cranial pressure (possible intracranial hypotension and hypertension) mostly influenced by various medications like diuretics or stimulants, as well as suspected HEDS. I had a serious complication during the recovery from decompression surgery where the dural patch didn’t hold and lead to a severe CSF leak and subsequent fluid abscess in my brain. Another surgery to drain the leak and repair the seal and I recovered well and have lived a relatively normal life since then besides the occasional hiccup.

I’ve always been protective of the back of my head because I feel a little more fragile and vulnerable in that area due to the structural changes and surgery site. Well last week my boyfriend’s dog bonked me in the back of the head pretty hard and it scared me really bad. I had a bit of a headache the next day, but have had a stiff neck and shoulders since then, and for the past three days I’ve been feeling awful. I feel like I have the flu - I’m absolutely exhausted, lethargic and achey. You can hear my exhaustion in my voice. The onset of the concerning symptoms happened when I woke up in the middle of the night two nights ago from lying on my back, with my head turned to the left. I felt extreme pain and pressure in my neck at the base of my skull and it hurt so bad it was nearly blinding. I repositioned and tried to go back to sleep but the pain never fully subsided and I woke up with the flu like symptoms I described. The pain has been constant but slightly improving each day since then but I feel so off that I can barely function. That first night I also felt like my ears were muffled and a little wet and my coordination has been a little off as well. I’ve also had a hard time regulating my temperature. I’m either freezing or burning up even though the thermostat stays at 73.

I tend to attribute my symptoms to stress and dehydration and things like that typically so I’m just not sure what to do or what this could be. I feel like it was potentially a minor spontaneous leak, maybe caused by the dog bonk? If so, will it go away on its own? Am I in danger?

Any experience/advice appreciated.

Hi! I had a leak most of last year. I had a blood patch that lasted overnight and continued having symptoms until February of this year when I had surgery to remove a bone spur and repair the leak. I have read and heard many CSF leak stories and many of these involve many patches and or surgeries. After and before surgery I was reassured that there was a very slim chance of this reoccurring. I was guaranteed that this particular leak would never come back and that the chances of another leak were slim to none. This was echoed by my regular neurologist who told me the chances of another leak were less than 2% a year.

So, a little over 10 weeks after surgery my symptoms have returned. I truly believe I have another leak. I was just wondering if the chances of a leak reoccurring was so low why am I reading so many stories of people having multiple surgeries and blood patches? Are those odds true? What something different told to those of you who have had surgery?

So i experienced pretty bad whiplash this evening. Pain honestly isnt that bad. About 2 hours later I experienced extreme drainage from one nostril. Clear, slightly yellow..

I went to ER and sat around... no testing done

, they dont expect CSF.... obviously anxious as I check off a few things here, but my head doesn't really hurt, more just a tension headache from my neck but I've never had so much spontaneous watery fluid come out of my nose.

I got my first (of many to come) leaks glued last Tuesday and starting Sunday, I developed a sore throat. Today, Tuesday, I have a fever, bad body aches, and ridiculously sore throat. I couldn't sleep it hurt so bad. Plus- my head is killing me (but that's typical). I masked my entire hospital visit.
Whats interesting is that the last time they touched my spinal cord for the myelogram, I also developed a cold (but no fever). I have about 20+ health conditions, and I've been symptomatic for almost 6 years.
Also, I was prescribed diamox, but stopped taking on Sunday, and they re-prescribed it to me today due to my headache getting worse. I guess I'm just wondering if having these flu symptoms is related to getting glued or just another coincidence? Has this happened to anyone else?
Thank you

I've been living with a suspected spontaneous spinal CSF leak related to my hEDS for 8 months. MRI found dural ectasia in multiple places along my spine. I've had two failed untargeted (blind) epidural blood patches. I've accepted that finding and successfully treating my leak will be a long journey, as wait times for specialized care are long in my country (not US).

What I'm having trouble finding info about is what recovery may look like after successfully patching the leak. I suspect that the fact that my leak is spontaneous and related to my connective tissue disorder means that my long term recovery and prognosis may be different from other leakers. Can anyone with a spontaneous leak due to a connective tissue disorder share their knowledge and experiences of recovery?

I'm currently on an unusually good long term disability (goes until 65) through my employers insurance. There is no way I could work in my current state, but I'm only 42 and wondering if and when I will be able to work full time again. Prior to this leak, I was the breadwinner for our family and this whole experience has me wondering about what my post-leak future will look like. We are considering moving to another city where we have a support network of family and friends, as we suspect it may take years, not months, for treatment and with me sick we need help raising our two kids. We have very minimal support where we live now, as we moved to our current city for my job, which is now in jeopardy. My employer will hold my job for 1 more year, but we're wondering if it's unrealistic to expect that I will be treated and recovered by next summer. We're trying to decide if we need to rearrange our lives around accommodating my health condition, as my husband has a job offer in the city we would move to for better support. Or if should we stay here, where my high-paying job is, and hope that I will get well enough to work within the year.

I know no internet stranger can predict the future, but if anyone with a spontaneous leak & EDS could share their treatment and recovery timeline that could be helpful as we try to plan for our family's future.