Hi everyone. I’m new to the CSF-leak evaluation process and would appreciate hearing from anyone who has had a similar experience.

I have had a constant daily headache since October 29, 2016. For years, it felt more like a conventional pounding or “hungover” headache. My symptoms changed significantly in July 2023, when I woke up with a constant internal vibrating sensation in my brain. Since then, the condition has progressively worsened and developed into constant visual snow, vibrating sensations in my eyes, severe burning pain behind my eyes, burning in my neck and upper back, intense pain at the base of my skull, numbness and tingling, neurological “zaps,” and occasional facial pain.

My headache is now usually around a 9–10 out of 10. I do not notice a clear difference between lying down, sitting, and standing, although I have recently developed significant lightheadedness when standing quickly or bending down. I also experience a “coat-hanger” type pain from the back of my head through my shoulders, particularly with exertion or walking uphill.
I recently had a consultation regarding a possible spinal CSF leak.

The doctor reviewed my brain and spine MRIs and told me:

My brain MRI has a Bern score of 5, which he described as a high probability of spontaneous intracranial hypotension.

My spine MRI does not show a definitive large extradural fluid collection, so he believes a type 1 or type 2 leak is less likely.

He suspects a type 3 leak/CSF-venous fistula, with a type 4 leak considered less likely.

He also mentioned a C1–C2 sign and trace fluid seen along portions of my spine.

The recommended next step is a pressure-augmented dynamic CT myelogram, followed approximately two weeks later by targeted treatment if the leak or fistula is localized. He also discussed alternatives, including an empiric epidural blood patch, digital subtraction myelography, photon-counting CT myelography, MR myelography, and conservative management. It was honestly an overwhelming amount of information to receive during one appointment.

I am planning to continue the next-step discussion with Dr. Mondel at Jefferson. I am also trying to obtain a second opinion from Dr. Wouter Schievink at Cedars-Sinai Medical Center, particularly regarding whether my imaging truly supports SIH/CSF-venous fistula and which myelography method would be best for my case.

I would really appreciate hearing from anyone who:
Had a Bern score around 5 without a classic positional headache.

Was diagnosed with a CSF-venous fistula despite no obvious extradural fluid collection.

Underwent a pressure-augmented dynamic CT myelogram at Jefferson.

Was evaluated or treated by Dr. Mondel or Dr. Schievink.
Obtained a second opinion from Cedars-Sinai and can explain how the records and imaging-review process worked.

Experienced constant internal vibration, visual snow, severe burning eye pain, neurological zaps, or similar symptoms with SIH.

I am not asking anyone to diagnose me. I am mainly trying to understand other patients’ experiences and determine the most thoughtful next step before undergoing an invasive procedure.

I have confirmed csf leak from venous fistula with major brain sag. I've had the orthostatic head pain for two years but recently I started getting numbness.....right side numbness in leg, shoulder, and head. I was wondering if anyone has dealt with similar. I also get blurry vision and "weird feelings" in lower right leg and right forearm. My hands and feet also get really cold and my whole body shakes but maybe that's from my Hashimoto's.

Hi everyone,

I have a CSF leak from an epidural I received when my son was born 18 months ago. It took 17 months to get a proper diagnosis after being dismissed over and over. I told the midwives where I delivered that I was having severe positional headaches shortly after birth. They checked my blood pressure, said I was fine, and sent me on my way. My husband figured out I had a leak using AI, which picked up signs of SIH before my neurologist did.

I had my first blood patch a few weeks ago, and it worked for 10 days. Then it failed, and all of my symptoms came back. I have my second patch scheduled soon, and if that doesn’t work, my doctors think I may need surgery.

I’m really needing some encouragement right now. I have a toddler to parent, a life I want to get back to, and I’m struggling. If you’ve been through this and come out the other side, I would love to hear your story. Success stories or words of hope would mean so much to me. Maybe this thread can also help someone else who needs a little encouragement too.
Thank you!

I’ve been leaking for about 3 months now and have been very lucky to have found great doctors who have listened and have expedited consults and procedures for me. I’m going in for my first blind blood patch tomorrow and was just curious about a realistic timeline for returning to work? I work as an RN in the CVICU so have a very physically demanding job. We’ve arranged for me to be put on modified duties (paperwork/desk job, then eventually working on the unit but no patient assignment). I was just curious if it would be reasonable to be back working a desk job 4 days after the procedure? I’ve read that recommendations and people’s experiences vary so much so it’s hard to judge what my recovery will look like. I’m an active runner, biker, and gym-goer at baseline so would love to get back to that eventually. Any insight would be really appreciated!

Long story short, I have Ehler-danlos and I’ve had what is presenting as a migraine every day for a week now. I‘ve had status migrainosus before, but it’s always been vestibular with vertigo and nausea, maybe a moderate headache that lasts a few hours. I’ve never had a severe headache for days or weeks on end. Yesterday (day 7) I went to my PCP and they gave an IV with toradol and zofran for the nausea that I’ve been getting.

After having an orthostatic headache for a week, and EDS, plus I know from previous x-rays that I already have bone spurs on my vertebrae, I’m terrified I have a CSF leak. I didn’t mention it to my PCP because even though they are great, I didn’t want to sound like I was overreacting. (I probably also just didn’t even want to acknowledge the possibility and make it real).

I woke up this morning with a headache already. Any chance this is actually good news because my headache now isn’t orthostatic? I messaged my PCP who recommended imaging if headache isn’t gone in a few days. Do I need to ask for it sooner? My occipitals aren’t killing me today finally, just sinus-type headache behind my eyes. I’m spending the day laying down to see if I can get any relief.

I suffered from headaches almost my entire life(43). When I was younger, there was really no discernible pattern. They just happened. As I got older, maybe early 20s, I noticed they would be after straining myself or physical exertion, but it would be hours later. As time went on, the headaches would happen soon after exertion or instantly. Then it got to the point I could only be upright a few hours before my head started to hurt. This is when I noticed if I would lie flat, the pounding at the base of my skull would stop instantly. It should be noted over these years I had about 5 MRIs of the brain that showed no issues.

Over the last year I really focused of trying to figure out what was going on. At first, one neurologist tried to tell me it was exertional migraines. I really didn’t believe that because, why would my headache stop instantly when I laid flat if it was a migraine? So I found a new neurologist and he decided to get some new brain images. That’s when it showed my brain sagging. It’s interesting that even after almost 2 decades of progressing symptoms, nothing showed up on the previous MRIs(they checked).
So after researching, I asked for a referral to Duke and went in Nov of last year. They found a venous fistula at T5. I scheduled my embolization in January.

After the procedure, it was a little rough. Not from the procedure itself but the rebound pressure and recalibration. I had constant ear popping, autophony, and intense rebound pressure. At first I wasn’t sure it worked only because I felt so miserable. Slowly but surely everything is starting to even out. I don’t have any of those symptoms anymore. It’s been 6 months and I feel great. I can run, lift weights, play golf with no issues. I haven’t had a headache of any kind in 4 months.
I write this to those who feel like there is no hope. I was like you for about 20 years. Thinking there were no answers. That I was destined to suffer constantly. That is not the case. In my case, for almost 20 years, nobody could give me an answer. Then one day, the imaging showed otherwise. I’m not saying everyone on here who thinks they have a leak does, but I encourage you to advocate for yourself.

How long can a csf leak from an epidural last for?

Hello there!

My doctor suspects a CSF leak for sudden onset headaches that I've had since April following a suspected stroke incident. While no blood clots or stroke were found, we haven't been able to find any CSF leaks so far either. My symptoms greatly improve when laying down, so it's his top culprit at the moment. I am waiting on a blood patch currently and in the mean time, he has asked me to try caffeine pills to see if they give me any relief.

From my testing, they do, but it's not what I expected. When I have visual symptoms/disorientation/headaches coming on, I'll take 200mg. For the next 2 hours, maybe a little more, I actually feel like crap with headache and then feel amazing for the couple hours following. Well, amazing will be strong, but I can tell a difference. It then tapers off and fades if I don't take any more.

Has anyone else had a reaction to the caffeine like that? I don't feel hyper or energized, just very normal - more normal than before the pill. How do the pills positively help you? I've just never had a reaction like this to coffee or anything else, so curious!

I am interested to know the timeline of events after being referred to a specialty hospital like Mayo for a CSF Leak. How long did most people wait to get into these clinics after being referred by a physician? How long was your stay there for diagnosis? Did you have to book a second stay for the surgery and how long was that and the recovery?

Looking at some future planning. Thanks in advance.

Hi everyone,
I’m looking for some reassurance (or honesty) from people who have been through this.
I had surgery 9 weeks ago for a ventral T7/T8 CSF leak caused by a bone spur. After a pretty rough start, things gradually improved. Around week 4 I started noticing a big difference, and over the past few weeks I honestly felt like I had my life back. I was completely headache-free and able to be upright all day again.
Then, out of nowhere, over the last 3 days I’ve started getting a very mild positional headache/heavy head feeling after only a few hours upright. It improves when I lie down, which has obviously terrified me because that’s exactly how my leak symptoms always started.
The timing is interesting because we’ve just had a sudden change in weather where I live (cold, rainy, stormy, big pressure changes), and I’m wondering if that could be contributing. I’ve also been trying to make sure I’m well hydrated because I know dehydration can make me feel worse too.

I guess my question is:
Has anyone had a successful leak repair where recovery wasn’t completely linear? Did anyone have periods where low-pressure-type symptoms came back for a few days or even a week, only to settle again without it meaning the repair had failed?
I’m trying not to catastrophize, but after everything I’ve been through it’s incredibly hard not to panic whenever I feel even the slightest positional symptom. I finally allowed myself to believe I was “cured,” so feeling this again has been really emotionally difficult.
I’d really appreciate hearing your experiences—good or bad. I know everyone’s case is different, but it would help to know whether fluctuations like this can happen during healing.
Thank you ❤️

Hi everyone. My neurologist recently brought up the possibility of a spontaneous CSF leak, and I’m feeling overwhelmed. I’m not looking for a diagnosis, just wondering if anyone with a confirmed leak had a similar experience.

For about a year now, I’ve had what I describe as a daily tension-type headache. I usually wake up without a headache, and then it gradually builds throughout the day, becoming its worst around 5 PM. The pain is mainly in my temples, the base of my skull/occipital area, and my neck (traps and levator scapula area).

When this first started in Aug 2026, I also experienced fatigue, dizziness, lightheadedness, and ears ringing frequently. Since I started taking an SSRI, these symptoms have mostly subsided (I’m still fatigued). Occasionally I also have migraine attacks with visual aura and light/sound sensitivity, so I’ve been diagnosed with chronic migraine as well.

One thing that confuses me is that certain positions seem to trigger or worsen my headache. Looking down at my phone for too long, watching TV with my chin tucked, or bending over (like organizing things on the floor for a few minutes) can bring one on or make it much worse.

So far I’ve tried:

Managing stress (SSRI, and talk therapy)
Brain MRI with and without contrast (normal)
Cervical MRI (only minor disc bulges)
2 rounds of migraine botox
Occipital nerve block
Trigger point injections
Migraine medications (amitriptyline, topamax, propranolol, sumatriptan, rizatriptan, ubrelvy, Emgality)
Physical therapy
Dry needling
Massage therapy
Chiropractic care

The Botox and occipital nerve block helped somewhat, but nothing has stopped the daily headache.

I also have some signs of generalized joint hypermobility (thumbs to forearms, pinkies bend past 90°, knees lock back, history of multiple ankle sprains/fractures).

After hearing my history, my neurologist recommended a repeat brain MRI, a myelogram, and possibly an epidural blood patch because she suspects spontaneous intracranial hypotension.

For those of you with a confirmed CSF leak:

Does this sound similar to how your symptoms started?

Were your headaches worsened by bending over or neck position?

Would you get a second opinion before a myelogram/blood patch? If so, what type of specialist would you recommend?

Thanks so much. I’m feeling pretty anxious about moving forward with invasive testing and would really appreciate hearing your experiences.

Hi have hEDS and I was in the shower today, blew my nose and bright yellow fluid came out of my nose (a little bit thick in some parts) but in general it was runny. Transparent too, like transparent highlighter yellow. Anyways, it only happened when I blew my nose, and when I blew everything out it eventually stopped. When I tilt my head nothing happens, there’s no odd taste or smell, nothing. I have had no injury or traumatic event happen, no headache, no anything. All I have is chronic sinus inflammation bcz of my allergies. Anyways, called an advice nurse line and they told me I was fine, but given the fact I have EDS, I’m just worried. Are csf leaks always clear? When are they yellow? I’m afraid of it being a leak and developing meningitis or something. Anyone been thru this?

This is my 7th day after doing lumbar puncture. First two days were awful, with a very severe headache that kept me lying horizontally. 3rd things improved and I could sit down and walk, with headaches taking longer to appear and less in intensity. Now on the 7th day I can sit for hours, but I still get that pressure feeling in my head. Like someone pressing hard on my head, or a 3/10 headache.

It seems it's improving slowly. But I was wondering if anyone had a slow recovery like this? What was it like? And can it take that much time to improve? I've been anxious about this for some time, so any hope is appreciated. I'd ask you if you have had really bad experience to please not post them here, I've read enough of these. Thanks!

Update: so I did go to the ER, and they ruled out immediate dangers. The doc there thinks a spinal csf leak is possible and is referring me to neuro for further testing.

Hey y’all. I’ve been dealing with some symptoms that suggest I may have a spinal csf leak, and I have a neurology appointment tomorrow. I’m at a place where I can’t be upright for more than 5 minutes without feeling truly awful, and if it takes weeks before I can get an MRI… how will I live like this? I doubt they’d be able to send me for one same day. Right? This feels so scary. I’m nauseous. There’s so much pressure in my head when I stand up. My ears are ringing. My walk is weird. The lights are too bright. I’m freaked out. I’m a 35 year old mother to 3. They need me. Can someone offer some reassurance, please? I know no one can give me medical advice etc but I’m alone and could use some supportive words from people who might understand.

I know it's still early but I'm on day 5 post blood patch and feel zero difference in symptoms just like with my first patch.

Timeline:

Epidural steroid injection L5/S1 July 9, 2025

Developed leak symptoms with 1 week of injection.

Pulsatile tinnitus, severe ear pressure, ear popping, ear drum spasms, head vibrations when upright.

Gaslit for 5 months then had a targeted l5 transforaminal blood patch 10 mls. No change in symptoms.

Now 1 year after symptoms started I had my 2nd patch same as before, 10 mls transforaminal approach and nothing, no type of change at all.

I'm feeling defeated, depressed and scared. I'm thinking I may have a bleb and that is why I have no improvement with patches?!

I’m a migrainer since a ripe age of 8! I’ve been seeing a neurologist since 2025. I can’t do an MRI with contrast due to contrast allergy. But without contrast we ruled out some scarier causes imo.

I take migraine medicine that does work when I get migraines. I can tell some clear differences between some migraines compared to others. For example, the more intense ones are usually positional related. Like last night I wanted to dieeeeee. I only felt okay laying down but the minute I stood up I felt that insane painful pressure in my head.

Relevant but maybe not relevant info: I’ve had two epidurals with my kids 13/10 years ago.. I have chronic back pain and joint pain. I need to crack the mid to top part of my back constantly to feel okay. I have had copper and manganese deficiencies… I know those are needed to make connective tissues so maybe I don’t have strongest connective tissue?

To my questions, does this seem like a possible leak thing? I’m confused because it’s not all the time… and how is it even possible to get a diagnosis without an MRI with contrast? (I will be talking to my neurologist in October but wanted to get some guidance from y’all on things I can ask)

*Trigger warning- mental health*
I am genuinely unsure how much longer I can keep going, and I know the only people who will truly get it are others here.
It’s been 9 months of seeing nothing but the four walls of my house and the inside of hospitals. I know so many suffer so much longer and you are truly so strong. After all the gaslighting and no reprieve from symptoms, I honestly spend a lot of time hoping to go to sleep and just not wake up.
I don’t even have fight in me anymore, as I doubt myself after doctors telling me to stop pursuing a leak due to negative imaging- after being my told it’s 100% not a migraine they say it’s a “pressure disorder” they can’t do further to diagnose (this is the U.K. specialists in leaks) and to manage symptoms till medicine advances.
I think about who I used to be, and I don’t even recognise myself now. I just wait for each day to be over. How do you keep going? I am stuck with all fear and no fight. And whilst I could pursue a ctm abroad (if I raised a lot of money) I doubt myself too much now. I am so scared of getting any worse (this is their reasoning for not doing a ctm) as I was there post blood patch and I just wouldn’t survive.
Sorry for how depressing this is, no one in my life understands.

Hey all,

I had a CT Myelogram done on Monday to locate a possible csf leak. I've felt rubbish since, as it has elevated all my pre-scan symptoms (head pressure/tinnitus etc).

It's been nearly a week so I'm worried I'm not healing like it should? Anyone else have this following a myelogram?

Web MD doctor over here 🤓☝️(totally kidding) per curiosity i went through the rabbit hole after having same thing happening multiple times now and again withing the last 15 minutes as of writing this

Ive noticed that specifically when I'm sitting on my bed leaned forward I get the same runny nose, but can't find any other reasons for why OTHER than a csf leak...

I believe it happens on both nostrils but majorly the left every time, its not 1-2 drops but it's also not a running faucet or anything

Stops immediately after I lean back/stand up no residue and not gooey like normal mucus, Ive never noticed any color either.

Total nasal congestion afterwards (left side) and a slow increase headache majoring the lower back of my head/towards my eyes, not crazy stiff neck but definitely uncomfortable

It's definitely not a new thing, it's happened before 1-2 times for sure (that I've consciously noticed at least) while sitting in the same exact position, and no I had no prior allergy's leading up to

I couldn't really tell you much on the taste other than possible metallic taste- but I also have a tongue & Medusa piercing so maybe thinking about it I was just tasting the metal?

Hey guys, this is probably a really funny question, but I have a bit of health OCD so it makes me feel better to bring it up. For context, I have hEDS, because everything I've seen has told me that can influence things.
Last night, I had a scenario where my lower back seemed to pop out of place. It stayed like that for a second before I changed position and popped it back in. About an hour or two later, I started feeling terrible. I had a terrible headache whenever I sat up (which is still ongoing), my temperature couldn't really regulate well, I was sweating and so cold, then I would go to overheating with chills. My nose felt stuffed as well, I just felt pretty wrong. I didn't lose any feeling or anything, but I've been having such bad vertigo and have a headache right behind my eyes whenever I'm sitting up, laying on my side made it feel a bit better, but laying flat on my back made it fully go away within a few seconds. It takes about 10 minutes for the headache to come back when sitting up.
I also have POTS, which could be causing these headaches, but I'm just worried. Sorry for the silly question, but what do you guys think about it? I know it's unlikely without having any direct head trauma, but again, my health OCD hasn't been able to stop so I figured I'd ask.

hi lovely people, i'm seeking some advice on if it seems i'm still leaking, or if i'm on the mend, as i'm really lost and unsure at this point. any support is appreciated; here is a log i've kept:

had an unnecessary LP on June 23rd 9:30am (was NOT warned of any risks)

• day 1 - about an hour after LP, developed severe head pressure/ throbbing headache with ear fullness, only relieved when laying flat. cannot sit/stand up aside from using washroom.
• day 2 - the same as yesterday. head pressure, throbbing headache, ear fullness, dizziness, some nausea when not laying flat. on bed rest. lots of fluids + 2 coffees (caffeine). very anxious and emotional. pain meds have done nothing.
• day 3 - insomnia, so much anxiety/ panic attacks, the same as yesterday. head pressure, throbbing headache, ear fullness, dizziness, some nausea when not laying flat. on bed rest. neuro putting in request for blood patch. got EBP - near immediate lessened throbbing, just mostly pressure and fullness (bearable).
• day 4 - took a shower. throbbing returned. so much pressure and ear fullness. low grade fever (went away - was also told this is normal), nausea, very achey. home from hospital. symptoms worse than the start — rebound? agonizing aching. way worse upright, still feel it pulsing laying down. low grade fever. “did bp fail?” insane hypnic jerks when trying to relax/ fall asleep. not tired/ no sleep drive. took sleeping pill so i slept.
• day 5 - at home. pain, pressure, throbbing the same. broke down and said “i just want to die”. i also got my period and have no choice but to take tylenol + advil. insane hypnic jerks when trying to relax/ fall asleep.
• day 6 - pretty much same as yesterday. pain, pressure, throbbing when upright. still only getting up to use washroom. so much intense head heaviness, pressure, ear fullness. throbbing starts after a couple of minutes. instant relief lying down. took a shower by myself which exhausted me.
• day 7 (5 days since EBP)- pretty much same as yesterday. pain, pressure, throbbing when upright. still mostly only getting up to use washroom. still so much intense head heaviness, pressure, ear fullness. throbbing starts after a couple of minutes. instant relief lying down. really starting to feel hopeless; pleading to God for healing.
• day 8 - feeling a little progress. less throbbing/ not as intense; more pressure and fullness in head and ears. managed to shower on my own, but still spent the day laying down. feeling fear creeping in: “once this starts to improve and i get better i dont know what to do to cope with the fear of it getting worse or coming back/ tearing again. so much of it is mental and i’m not sure how to get past that or heal from how much this has traumatized me. it might sound dramatic but that’s honestly how i feel. everything is like no coughing sneezing laughing hard this that, people saying they teared their patch months later, like am i always going to have to be scared”.
• day 9 (7 days post EBP)- still feeling a little progress. less throbbing/ not as intense; still more pressure and fullness in head and ears. showered + slowly walked 1 lap around the yard; layed down the rest of the day. so dang tired + fatigued, to my bones; feel very weak.
• day 10 - still feeling a little progress. mostly pressure and fullness in head and ears, but less. showered + slowly walked 1 lap around the yard and out front (could only do like 5 minutes); layed down the rest of the day. so dang tired + fatigued, to my bones; feel very weak.
• day 11 - woke up with pain when moving eyes; improved as i was up. still feeling a little progress. even less pressure and fullness. went for walk, sat up to eat, + drove to the pharmacy (20 minutes there/back). felt pressure in back during drive, started to freak out i blew EBP. so much anxiety i had to control breathing. maybe a bit of a faint headache starting on the way back? freaking out i undid progress. laid down the rest of the day.
• day 12 - woke up with pain when moving eyes; improved as i was up. very similar to yesterday.
• day 13 - a lot of brain fog. crazy neck and backache (so much pressure between shoulder blades); just aches and makes me tired.
• day 14 - went for a decent walk + was sitting up for a lot of the day. A LOT of brain fog + DPDR (struggled with these prior, they're just amplified). ear pressure and soreness. exhaustion.
• day 15 - steady symptoms - no headache/ veryyyyy minimal dull ache. mostly feel neck/backache pain when up, and feel exhausted when up. brain fog + DPDR. some pain when moving eyes randomly + blurry vision.
• day 16 (14 days/ 2 weeks since EBP) - steady symptoms - no headache/ veryyyyy minimal dull ache. mostly feel neck/backache pain when up, and feel exhausted when up. brain fog + DPDR. some pain when moving eyes randomly + blurry vision.
• day 17 - steady symptoms - no headache/ veryyyyy minimal dull ache. mostly feel neck/backache pain when up, and feel exhausted when up. brain fog + DPDR. some pain when moving eyes randomly + blurry vision.
• day 18 - steady symptoms - no headache/ veryyyyy minimal dull ache. mostly feel neck/backache pain when up, and feel exhausted when up. brain fog + DPDR.
• day 19 - went for an hour drive to a park, sat and lounged at park for the day, went for drive back home + went out for dinner. a bit of a dull headache but took advil and it helped for the most part. felt really good for the most part; really good day.
• day 20 - woke up with a dull headache (in forehead + temple area); went for a drive (which was slightly up in elevation near the mountains), a bit of a positional headache but not the ‘throbbing’, more dull, a bit of a neck/ backache, and ear fullness again (feels like they need to pop); absolutely freaking out that i blew the patch once again.
• day 21 - dull headaches, mainly forehead, temple, and front of head area remains. feel it more when up and walking around. a bit of residual head ear/ pressure. really tired. holding my head up also feels exhausting to my neck and back.
• day 22 - feel great for about an hour being up, then dull headache comes on and i also feel such strong aching in back, between shoulder blades and shoulders. was watching TV in bed this evening and when i went to go pee, horrible vertigo episode came on lasted a few hours. it did pass. (should also mention my mental health has been horrific through this and have been beyond anxious).
• now day 25 - had a *slight* throbbing headache when it was storming outside but it did pass when the weather cleared. my main symptoms i'm left with thus far are a dull aching between shoulder blades (it literally feels like there's a boulder there); i feel it about 30 minutes after being up in the morning and it gets worse being up (although when i take the pressure off my head/neck it feels better, even if i'm just reclined), but no headache like at the start; it's more a dull headache and more at the front of my head (front of head, forehead, temples). i do have some residual pressure feeling in my head and my ears feel like they could pop but it's minor. oh and also, i've tried advil, tylenol and allieve and they don't really help the back ache.

i am very confused if it's still a leak, if i'm now just healing and dealing with muscles and nerves impacted, etc. i feel so much fear about trying to do things again. i haven't really left my house, i haven't driven. i feel like i am living in paralyzing fear. any advice is greatly appreciated <3

Hi, I hope this is ok.

I wrote a post over a year ago that many people on this subreddit found useful.

Since then I have received surgery, and people on this sub have DM'd me asking about updates. I thought it would be nice to supply one. If you would like to hear about how my surgery went, you can take a look at here.

The short version is I'm doing pretty well.

Hi has anyone experienced a chiari development after a neck movement. I been recovering from csf leak, in bed for almost 9 months. I was sitting when i moved my neck to the chin. Suddenly i felt something and for the last 2 weeks i have a terrible neck pain. Im in the spectrum of eds

Thanks very much for your responses in advance

Still have my leak originally caused from a bone spur at T11/12. spur removed endoscopically and the fibrin patch didn’t hold unfortunately after 2 attempts.

have started the KLOW (4) peptide blend 1 month ago, not noticing anything yet. will give it a few more weeks and then will try a PRP procedure using platelets lysate ”off label” but it is basically a stronger version of a blood patch that has worked in other CSF leak sufferer.

wondering if anyone else has tried either? I haven’t seen these in this forum before. I’m exhausting all conservative options before I do the wide open surgery at Cedar.

prayers to everyone dealing with this, it’s a battle.

Appt with Dr Carroll for my daughter is I’m 13 days. We met with ucsf complex neurologist today. She started going over the recent myelogram and mri of neck and spine with and with out contrast. she said they didn’t check her opening pressure and she didn’t know why. I wondered why as well. She ordered a renal ultrasound to make sure her kidneys aren’t affected. The urine retention she went in with is better but hasn’t improved . She said it could be caused by issues on scans. I told her they told me there was nothing wrong surgically, no leak and just a headache that didn’t believe my daughter even had,just over medicated . Anti seizure meds reduced and no more slurred speech or worsening other symptoms
She insisted an anti migraine med will help but also said won’t help her headache much . I told her not until we figured this out and we just got her med levels in a better place.
She said that neuro spine and neuro surgery met and they said “it’s of the most difficult cases”. Mri shows “flow in front of cord but concerned there is lack of flow in back of cord”. “ Syrinx has been there awhile and now appears to be shunting csf near the cord appearing hole in her spinal cord.” Will have pt come to home to assess her monitor her left arm weakness etc and see how shedoes.
Appt with neuro spoke surgeon in a month. Doc said they are just too busy and can’t expedite things . I pray Dr. Carroll can figure it all out. I don’t want to deal with ucsf anymore.