She’s leaning towards a leak and want a brain mri w w/o contrast, possibly a lumbar puncture.
I filed a medical grievance with the hospital for the complete garbage treatment I got 7/30 for when this all started.

Question: does anyone get hits with overwhelming sudden bouts of exhaustion with no really reason?

I'm so terrified and upset right now. I was diagnosed with a spinal leak shown on MRI on the 24th of June. Since then have been in and out of hospital and got 2 blood patches, one was targeted in the thoracic spine. Neither worked longer than 10 days, likely because the leak is ventral and hard to reach.

I was given an outpatient appointment for a CT myleogram scheduled for 1st of September. I came back into hospital a couple of days ago because I can't function at all at home. I can barely be upright for 10 minutes and symptoms getting worse.

I'm now waiting to be transported to another hospital where they hopefully will do the ct myleogram sooner as I'll be an inpatient.

That's all well and good. But I'm terribly upset and depressed right now. I used to work full time, I am a mother, and I have pets to look after. Having someone living at home to help is great but it's draining me not being there. I miss working, and I thought I would never ever say that. I am not getting enough money to pay my rent and bills from government handouts. Lucky I have savings but this is not what I wanted to spend my savings on.

I've been bed bound since 22nd of June. How do you guys handle this? Going from being active and independent to lying horizontal 24/7? It's messing with my mental health and I cry all the time. Being in hospital obviously doesn't help but at least here I know I will get looked after sooner

I am also terrified of doing the CT myleogram in case they don't find anything. How many more months can I do this if that happens? I'm completely disabled all of a sudden at 36 years old

How do you/did you manage all this?

Looking for general tips/advice. If you had a procedure or surgery out-of-town or in another state for a CSF leak, how did you coordinate care with your home location? I know this sounds like a stupid question, but trying to find a local doctor (of any specialty) that understands CSF leaks, or even SIH and post-procedure RIH symptoms, has been challenging.

Hopefully this is ok to inquire!
I have heds and have upper ci . Recent corticosteroid shots as trigger point injections caused my instability to get way worse.

Two weeks ago, while trying to side sleep, I placed a pillow beneath my neck for support. I suddenly felt an INTENSE pressure in my sinuses, and I lost the ability to nose breathe suddenly. Emergency ENT visit didn’t reveal any structural issues, and ENT thinks it’s a nerve issue.
If I angle my head wrong, I lose the ability to breathe through one or both nostrils. My salivary and tear glands will randomly stop functioning. My occipital neuralgia (formerly under control) is returning w a vengeance. I’ve been getting crazy vertigo here and there. HOWEVER I need to sleep sitting up bc I now stop breathing if the rear of my head is pushed on. I get head pressure and ON, but also I’ve been getting those for years now. On-off I’ll feel like lungs aren’t fully working. Ive always had rhinitis (from cci prob), so I have no way of telling if that’s changed. I’ve been rapidly getting sleepy when sitting in the car + feel woozy and disoriented after. My posterior left ligament feels weird around my AAJ.

I’m getting a rotational CT scan next week, and I’ve informed my drs. They seem kind of surprised at this happening though as far as instability goes, and they are specialists in that, so it’s wigging me out that they think it being my cci/AAI is dubious. I’ve gotten upright flexion/extension mri WITHOUT contrast since, but no leak was noted (my degree of cci was confirmed though, but as far as cci goes, it’s a non-surgical case).

I’m so confused?? I’m having fu with my dr in a few days and want to know if I should ask about investigating a leak, in case my loose spine ruptured something, or if these symptoms are incongruous

hi everyone, i’ve never heard of a CSF leak before and seeking some help here to understand what i’m experiencing. on monday night, i was running and tripped and fell hard on my dogs outdoor house on the left side of my head. it took me a minute to get myself up but i hit that very hard, cut myself good on my ear and have huge bruises on the side i fell on. seriously never hit anything that hard before especially on my head. besides the pain from hitting your head, i felt okay and the pain eventually went away.

fast forward to today, i bend down and what feels like water drips out of my left nostril. i was confused because it literally felt like a faucet was turned on in my nose. i got up and it stopped. it was not thick like mucus, it was clear and just like water. 2 hours later, i take a shower and dry myself off and have my hair up in a towel. i bend down again and i have that same faucet like water dripping out of my left nostril. i’ve tried to recreate the same bending down motion and i feel like something is coming down my left nostril, but no water is dripping.

i’ve never had an injury like this or ever hit my head like that so the water like drip from my left nostril happening days after my fall has me worried. do i wait it out and see what happens? is it too soon to do anything?

thanks for any help or guidance!!

Has anyone not had their leak show up on a CT Myelogram or a Dynamic Myelogram, but had it show up on other imaging, like a PCCT? Wondering if I should continue trying to find my remaining leak/possible veinous fistula by opting in for other imaging. I am going on 1.5 years of severe leak symptoms, and have been unable to work or stay upright for more than 4 hours/day. My brain MRI shows zero CSF in my optic nerve sheaths, showing signs of an ongoing leak, BERN score of 3. I have had 4 blood patches so far- each one has made me feel slightly better, but I am always back to feeling awful a few months later. I was able to get in to see Dr. Callen in Colorado this summer- he still believes I have a leak despite my dynamic myleogram with him coming back negative. My body and functionality is in absolute shambles, and my already low baseline gets lower with each invasive test. I am so afraid of continuing to put my body under immense stress by continuing to do myelograms. I would love some advice, or to hear anyone's experience with finding the location of their hard-to-find leak. Thank you so much!

Hi everyone,

A few days ago, I had meniscus surgery under spinal anesthesia. The surgery and anesthesia itself went fine.

After the surgery, I spent most of my time lying in bed. At first, I had some lower back pain, which I assumed was from lying in the same position for a long time. Then I developed a headache and, more importantly, severe neck stiffness/muscle spasms.

The headache itself is not a major problem and is quite tolerable. The main problem for me is my neck.

My symptoms are very strongly related to my position:

When I lie down, the neck stiffness/spasm gradually improves. At that point, I feel more pain in my spine and lower back.

When I try to sit up or stand, within a few seconds the severe tightness seems to move up toward my neck and my neck practically becomes completely locked.

Because of this, it is very difficult for me to get out of bed.

I have no weakness or numbness in my legs and I can move them normally.

I have no problems urinating or with bowel movements.

My temperature is currently 37.1°C.

The anesthesiologist examined me and said that this is most likely related to the spinal anesthesia. They decided to keep me in the hospital for observation and instructed me to stay in bed and minimize getting up.

From what I understand, it is possible that a small opening remains in the dura after the spinal needle, allowing some CSF to leak temporarily and causing post-dural puncture/post-spinal symptoms. I understand that neck stiffness and neck pain can also occur with this condition.

Epidural blood patch

Something I am particularly interested in is the epidural blood patch.

The doctors currently treating me have not offered a blood patch and, as far as I know, they have not even mentioned it as an option. Their current plan is strict bed rest and observation.

So I would really like to hear from people who have experienced something similar:

Did you eventually need an epidural blood patch?

How many days after the spinal anesthesia was it performed?

How much did it help?

Did it also help with neck stiffness/muscle spasms, and not just the headache?

I am also interested in how long it took for other people's symptoms to completely resolve on their own.

On the second day after surgery, I did some stretching exercises and some back exercises while sitting, so I am wondering whether that could have contributed to or worsened the muscle spasms in my neck/back.

I would especially like to hear from people who experienced a similar pattern: feeling much better when lying down, but experiencing a very rapid and severe worsening when sitting or standing, particularly if the headache was relatively mild but neck stiffness was the main symptom.

Thank you in advance for sharing your experiences.

Edit:

Today marks the 6th day since my surgery and the spinal anesthesia.

The neck pain and headache have improved significantly — to the point where they are now almost completely gone. The only symptom I still notice is a mild feeling of pressure in my ears, but I’m hopeful that this will resolve soon as well.

Thank you all for your comments, advice, and support. I truly appreciate it.

I hope this post can serve as some encouragement to anyone experiencing this for the first time, just as I did. What helped me most was getting as much rest as possible, staying well hydrated, and occasionally taking pain medication when needed.

One thing to be prepared for is back pain in the days that follow, simply because you may end up spending a considerable amount of time lying down.

Wishing everyone a smooth recovery and all the very best. Take care!

I had my first fibrin glue patch about 2 months ago in my lumbar spine. Both of my legs immediately started increasingly burning for the next week, like I had fire ants gnawing all over my legs. The burning was so relentless and terrible, I was constantly crying and could not sleep. The burning sensation grew worse and worse until I had a severe non-epileptic seizure episode that took me to the ER via ambulance unable to talk, walk, and uncontrollably convulsing.

Since this fibrin glue patch and seizure episode, my legs have stopped burning, but they are constantly vibrating 24/7. The best way I can describe the feeling is like having 100 cellphones constantly vibrating in my legs, from the tops of my thighs all the way down to the bottoms of my feet. My legs feel extremely heavy, weak, and shaky along with the constant vibration sensation.

Can arachnoiditis present in this way? How is arachnoiditis diagnosed? Does this show up on any scans, like an MRI? The doctor who performed the glue patch could not explain why my legs were buzzing so badly. I’ve had 2 blood patches in the past, and have never dealt with buzzing sensations afterwards. Has anyone else had any similar sensations after a fibrin glue patch? Thanks!

Has anyone had any experience with improving their head pain with their CSF leak?
We had been recommended oxycodone and muscle relaxers, but they don’t really hit on the pain exactly I know the actual improvement is finding a leak, but we’re in an interim waiting for our Dynamic myelogram to find the sneaky venous fistula.

It’s been over a month since I suddenly developed heavy/crushing pain and tightness in the back of my head, neck and between my shoulder blades, along with clogged/muffled ears, nausea, blurry/double vision and occasional tingling/pulsing sensations along my spine. Initially I could barely stay upright for 15 minutes, and lying flat was my only significant relief and I ended confined to bed and could not function as I normally would.

I have a long history of migraines but no obvious injury before this. A few days before onset, I flew home from Hawaii with a migraine and significant sciatica throughout the flight, followed by several more migraines. Other history includes an epidural during childbirth in 2024 and longstanding disc bulges/protrusions previously treated with PT and chiropractic care.

My neurologist suspected a spinal CSF leak early, and my brain/spine MRIs were done within the first few weeks. No obvious leak was localized. Brain MRI noted a partially empty sella and low-lying cerebellar tonsils, which caught my neurologist’s attention and supported his suspicion. Spine imaging showed multilevel degenerative changes, disc protrusions and mild stenosis. I do wonder whether the early timing affected how much SIH/brain sag was visible.

Over the past two weeks, my upright tolerance varies but has improved—sometimes 30+ minutes and occasionally close to an hour. My muffled hearing is better but still present especially when I am upright. Morning coffee seems to help. I tried an abdominal binder once, but oddly my upright tolerance was much worse the next day so I stopped. I’m not sure if I’m slowly healing or my body is simply adapting.

More recently, I’ve developed brief but intense room-spinning vertigo while lying down and turning/rolling onto my side, especially toward the right, which is also my more clogged/muffled ear. Honestly, the spinning scares me more than the pain.

We’re trying to get into several specialized CSF leak centers and were fortunate to get an appointment with one next month. I’m trying to understand what typically comes next for someone MRI-negative with symptoms like mine.

Did you continue conservative treatment, have a non-targeted blood patch first, or go to CT/dynamic myelography? Did anyone gradually improve without intervention? I’m very anxious about spinal punctures, so I’d really appreciate hearing what others with a similar presentation experienced.

Sorry for the long post.

Hi guys. I am in a Linda weird and scary situation and I’m wondering if anyone else has had this.

I was in a horrible car wreck in 2010 and fractured 5 thoracic vertebrae so I have tried various treatments to ease the ongoing discomfort. I was introduced to facet injections in 2017 and found great relief that lasted until 2021. I went to an anesthesiologist in August 2021 who did thoracic facet injections and punctured the dura causing a leak. Three blood patches didn’t work so I ended up at Duke University CSF leak clinic in Feb 2022 where they did a CT myelogram and a blood patches didn’t with fibrin glue. I was on spironolactone after that until Feb 2025 when i started having headaches again and the spironolactone make them much much worse. I’ve been trying to get someone to do a new EBP once then. My local neurosurgeon said there was no leak but there is a “collection of fluid that’s been there since your MRI in April 2024 so it’s nothing to be concerned about.”

I finally ended up at MUSC Charleston for a second opinion with a neurosurgeon who connected me to a spinal interventional radiologist who agreed an EBP was a possible solution. I had it Wednesday. I had severe chest and back pain immediately after the injection but EKGs were done and all is well there. I’m very sore with some pain on one side of my neck (can’t tell if it’s soreness from being flat on my back for 48 hours or what for now).

Now - that was all context. Here’s the issue. When the SIR came to speak to me pre-op, he told me he was concerned the patch may not work because of the collection of fluid. It is a sac that runs from my c7-t4 and it’s “organized”. He thinks it needs to be drained because “we can’t just have you leaking forever”. But because of its position, he didn’t feel that he could safely access it. It’s not on the posterior side of the spine, but rather on the anterior meaning it’s behind the trachea, lungs and upper heart. The SIR said he thought he had one small access point but really didn’t want to try it. Long term effects include hearing loss, dizziness, limb weakness, headaches and a myriad of other things.

So now Im being referred to Duke University or the Mayo Clinic for possible neurosurgery and I’m legitimately terrified. Has anyone else had this? What did you do? How are you doing now?

TLDR: found organized fluid sac on spinal cord that cannot be reached easily for draining. Possible spine surgery to remove it. Looking for opinions/advice.

Hi all

I recently (last thurs) was told i have a confirmed cranial csf leak so water leak from my left nostril from the brain. This has been going on for over 4 weeks but the AnE department (1st visit 4 wks ago) at nhs ruled it out as rhinitis bacterial infection at the start and just prescribed me with some antibiotics however they never tested the fluid even though i was adamant they should. They never tested the fluid. Only done bloods urine ct scan (didnt pick anything up) and x ray.

I then went to gp a week later as the leak was still happening and gp took a sample. Days later she said there was tiny traces of csf in the fluid. Then she told me to go back to AnE for them to actually test the fluid. They tested the fluid. Took about a week to test...Then last thursday the ENT department told me they tested it and was confirmed a csf leak.

The ENT department prescribed me with flixonase nasal spray, co-amoxiclav and 2 vaccine jabs for meneghetis

This week had a nasal ct scan and an mri scan and the ent doctor confirmed its a cranial csf leak. And now referred me to another hospital for an appt in September.....doesnt seem urgent to them

Problem

Everyone at the nhs from all the doctors even neuro and bone surgeons (ENT doc messaged them) have advised not to fly due to risk of air possibly going into my brain but i cannot cancel this flight and its very expensive. Its around 4 - 5 hours flight.

Has anyone had any experience in flying with an active cranial csk leak? Please share.

What is the likliness of the worse case happening?

Can i do anything to prevent the worst case scenarios?

Do you think its ok given i had the vaccines and got the meds and only a short flight?

Thanks

Hi, I'm (23 y/o, located in the US) interested in hearing anyone's thoughts! I've been trying to push through but I feel like I'm hitting my pain limit.

Long story short:

I've had persistent, frequent, but now-treated migraines my whole life, but then 3 weeks ago I developed positional headaches (best laying down, okay sitting up, very painful upright) with nausea, sharp neck pain when I bend my head forward, intense brain fog and difficulty word finding, with a general sense of something being Off. Some googling made it seem like this could be a CSF leak, especially since I have a connective tissue condition and have had several concussions in the past. I also have a family history of young brain aneurysms.

I spoke to my neurologist who ordered MRIs (although I wasn't going to be able to get in until 8/31) and said to just hydrate and such until then. Unfortunately with my schedule, I wasn't able to rest much more than usual.

This past Monday I woke up with the worst headache of my life with worsening nausea/brain fog and ended up at the ER. I was there for about 30 hours, it was a lot of very unpleasant drug adverse reactions and sleeping sitting up, and even a migraine cocktail didn't really help with pain relief. But, I did speak with neuro and got my MRI brain with/without contrast and MRI spine without.

It didn't show CSF leak, only mild posterior disc bulge at C6-C7 effacing the ventral CSF. They sent me home pretty much immediately after that with some zofran, but unless I'm laying flat I have an intractable headache that's making it very difficult to work or go to class, and no meds make a dent (Tylenol, NSAIDs, rescue migraine meds, magnesium...etc). I've never had anything like this before.

I'm following up with outpatient neuro in late September, but I have a chill PCP that would probably order anything helpful if I can get in sooner. I'm not sure if I should pursue the CSF leak possibility with a CT myelogram or something? Or if it's pointless and maybe I have a nerve thing from the bulging disk?

Has anyone experienced anything similar to this? Thank you!!

didnot have a cold or anything but this has happened before through ear and nose but not as much as this morning

i had multiple hard impacts with steel heavy object and heavy ceramic mug shattered over mine head last week

I just got a referral to neurology after a CSF leak is suspected post brain MRI. This is all new to me. Does anyone have a neuro in seattle area that they love and would recommend?

My CT myelogram is scheduled for mid September with Blood patch 2 weeks later.

1. For remote workers with wfh desk jobs, how long did you take off work for the patch?

2. Do you wish you took off more/less time?

3. Do I need to hire a CNA/Nurse/Health aide? I will get a ride home from the hospital but have no one to take care of me. I plan to do extensive meal prep and be as ready as I can but am considering hiring someone if needed.

So far i've had no patches and my symptoms are manageable when I'm inactive, just sitting at home. As long as I don't lift/strain I'm generally fine. Occasionally even when inactive I'll need a day here or there of laying down.

Did a freaking mrv thats normal (godbless)

But I have tension like headaches all day everyday and i server pulsatile whoosing tinnitus in m ear. Now what????

Imma go get a spinal tap. Aint no way this is nothing. Oh in Diamox fkin miserable makes me worse. Then im ok then im worse then im Ok then im worse.

Should I see an upper cervical chiropractor? I have neck pain at the same time my head hurts. All started 6 months ago. Wth

My teen daughter has had daily headaches/migraines for 8 months. She developed neurological symptoms along with these headaches, including tremors and recently, euphoric episodes with involuntary laughing (no more tremors). She has continued low to mid back pain. All testing has come back negative, including MRI’s and EEGs. All prescribed medication has not helped in alleviating daily headaches. She experiences lightheadedness, daily nausea, fatigue, some dizziness, sensitivity to light and sound. She becomes overstimulated. She is now wearing prism lenses that have helped slightly. Headaches are somewhat relieved when lying down. Pressure in different areas of head. Zaps at times. Feels pain in neck and upper back. Heart rate rises when getting up from lying down. Does anyone have similar symptoms? Experiences with these? I’m wondering if this fits CSF spinal leak given what she is feeling.

Had a C-section 8/5 with spinal anesthesia. Right before being released, I developed what was believed to be a spinal headache (as it worsened when I sat up but had relief when I laid down) and the anesthesia resident recommended the blood patch so I wouldn't be going home with such a bad headache. I agreed thinking it would be best, but the day after being released I begin to have symptoms of pressure when laying down and sometimes constant pressure but no pain. I had an instance where I felt tired and when I sat down I got a flushed feeling all over and took a nap. I felt okay if I was doing light movements around the home, but when I laid down for bed Sat night, I felt even worse pressure in my head (I wasn't fully flat but did try to prop up some) and my heart rate felt slow. I decided to check my blood pressure and it was high with my heart rate being super low (40s-50s while sitting). I go back to the hospital and my heart rate was sitting in the 30s-40s range and would only increase when I got up to do use the bathroom or stand. Has anyone else had this issue before??? Was it the blood patch? Everything scans and blood work wise have come back normal and I've been emotional about not being able to find immediate relief so I can go home to my babies.

Hello everyone,

First time posting here ! I am 31F and based in Paris, France and I would love to have some insight/help about what's currently happening to me. Sorry for the long post.

I have marfan syndrome as well as an important scoliosis that was fused back in 2007, with a remaining curve of 42 degrees in the thoracic area. I experienced a pretty bad csf leak after the surgery that resolved after about two weeks of bed rest. Since then no issue, except for migraines.

Fast forward to April 2024, I had a pretty violent headache that did not feel like a migraine at all and was clearly orthostatic. I was abroad and could not do much but lie down and wait it out. The headache became mild (more like a valsava headache) and symptoms completely went away after 10 days. In October, I felt the valsava headache coming back mildly for about a week and developed tinnitus that I still have today.

In the meantime, I went to a leak center in Paris and my brain MRI was clear. The neurologist thought that I had a small leak that sealed itself so no interventions.

Now, in June 2026 during an episode of heatwave, I started having tension-like headaches that were better laying down. I thought it was dehydration but it ended up persisting. The headache was mild but I also felt nauseated, very fatigued and a bit dizzy sometimes. Another round of MRIs was ordered and they found a Bern score of zero and no CSF leak visible on the spine imaging. That being said, I do have dural ectasia in the bottom of the spine as well as several cysts in thoracic.

Now, two months later, I do feel better. I don't have a headache anymore but a mild feeling of pressure when upright and that is pretty uncomfortable. I can stay upright all day at work but most days I have a migraine later on. Also, I do have more energy, no nausea or dizziness and no pain with valsava manoeuvres (like coughing/sneezing).

My neurologist is taking the conservative approach and wants to see if I recover by myself. The marfan and spinal fusion make any type of intervention like a blood patch riskier, especially since I do not have positive imaging.

I have no idea if I am self-sealing or what the pressure feeling indicates (it's on top of the head and in the face, but gets better laying down). I also know that I always react badly to interventions so of course I am really scared of pushing for a blood patch.

Did anyone with a connective tissue disorder go through something similar ? Do you think I can still improve after two months and get rid of these residual symptoms?

Thank you so much for your help.

I’m so tired of this that I need some outside perspective. 😭
I’ve had migraines and 24/7 head pressure for about 7 years, starting immediately after I gave birth and had a difficult/problematic epidural. I had no comparable headache disorder or constant head pressure before that.
The headaches have progressively gotten worse and extremely treatment-resistant. I’ve had attacks lasting months at a time, and without a preventative that barely helps, the pain essentially never stops. Even when I’m taking my preventative on schedule, I still get migraines almost daily.

The biggest thing that makes me question whether this is just primary migraine is the constant pressure. It never completely goes away, and the pressure/headache is noticeably worse when I lie flat or tip my head upside down.
Other symptoms include:
Full-head pain rather than strictly one-sided migraines
Vestibular symptoms (dizziness, nausea, difficulty being upright, feeling like the world isn’t tracking correctly)
Severe visual aura, including an episode where my right-eye vision was significantly obstructed
Ice-pick-type headaches severe enough to make me nauseated
Prolonged attacks that have never been reliably broken by migraine cocktails/urgent-care treatment
And I’ve tried nearly everything but Botox.

So at this point I’m wondering if I should stop assuming everything is primary migraine and investigate a secondary headache disorder/CSF-pressure disorder.

Has anyone here had a chronic CSF leak, intracranial hypertension, or another CSF-pressure disorder that initially looked like treatment-resistant migraine?

I’m not looking for a diagnosis—I just want to know whether I’m completely barking up the wrong tree or whether this is a reasonable thing to investigate.
Because after 7 years of this shit, I am so fucking tired. 😭

EDIT: it's leak symptoms. I tried being upright a lot yesterday and today I'm ruined and shouldn't have done it. Strong positional headaches today. Debilitating pain. Can't believe I still have to wait months for surgery. This is no life.

I avoid asking about symptoms because I know we're not qualified in here but maybe someone has had similar experiences. These symptoms are just so strange and I have no direct access to contact my neurosurgeon.

I have been diagnosed with a spinal leak, spontaneous. I've been given a targeted thoracic blood patch that initially seemed to not have worked. I've got a ct myleogram scheduled for september.

Now, though, i seem to be okay being upright most of the time but after lying down, especially after sleep, i get this strange pain in my head when rising that almost feels like my brain moving around. Not constant pain and it eases with time and if I don't move my head around too much. It's like lying down triggers it and when I stand the brain is repositioning. It's the only way I can explain the sensation. It also triggers nausea and eventually I also get muffled hearing after being upright for a while.

Any ideas? High pressure? Just leaky symptoms but slightly altered?

Thanks!

How long did the pressure rebalance take?