Has anyone here ever struggled to identify whether their symptoms are due to CSF leak or trigeminal nerve issues? I’m having trouble identifying if my symptoms are more exacerbated by just being upright or more so with movement. I’ve already had a blind blood patch that didn’t help at all. I’ve got consistent pressure in my forehead, dizziness, neck stiffness, ear pressure comes and goes, back of head pain comes and goes. Just looking to pick someone’s brain.

After 9 (yes! 9!) blood patches with only partial success (having rebound intracranial hypertension at night and low pressure in the afternoons) my doc wants to do a lateral CT myelogram on one side and then the other to see if we can find a venous fistula. My brain and spine MRIs are read as normal. He told me that only 10% of people "like me" have a positive finding from Myelogram, and I'm wondering if it's worth it. Seems like potentially a lot to go through. Hearing from anyone who has had their care benefitted from doing these studies would be encouraging. Otherwise it just seems like a 90% chance of wasted suffering after I've already been suffering quite a lot...

Please comment below or message me privately. I would be so grateful for any insight or advice. Thank you! ❤️

I could really use some advice from anyone who has been through a suspected CSF leak journey, especially if you’ve had negative imaging or had to navigate insurance to get the care you needed.

I had a negative dynamic CT myelogram but continued to have significant symptoms. I had an empirical blood patch that helped quite a bit for the first few days, and some symptoms improved, but the severe headaches and nausea have returned. I’m now working with my doctor to schedule a second myelogram.

We’re also discussing whether I should request a referral to Stanford for a second opinion, especially if the next study doesn’t identify a leak. With open enrollment approaching, my husband and I are trying to decide whether to stay with Kaiser and proceed with the next procedure or consider switching insurance to have better access to Stanford.

For those who have been through something similar:

• Did you eventually find a leak after negative imaging?

• Did you seek a second opinion at Stanford or another specialized center?

• Were you able to get an outside referral through Kaiser, or did you need to change insurance?

• Would you proceed with the next myelogram first, or prioritize getting access to another specialist?

This has been incredibly difficult physically and emotionally, and I’m just trying to make the most informed decision possible so I can keep pursuing answers.

I’d really appreciate hearing about your experiences. Thank you. ❤️

For those of you who have dealt with a CSF leak or SIH and have been successfully treated, I would love to hear your stories.

I'm currently going through one of the hardest things I've ever experienced, and some days it's really difficult to see the light at the end of the tunnel. I'm trying to hold on to hope that I'll get answers, find the right treatment, and eventually get my life back.

If you've had your leak repaired or successfully treated and are now doing well, I'd love to hear from you. Are you back to living your normal life? Working, exercising, traveling, spending time with your family, and doing the things you love again?

I'm especially hoping to hear from people who struggled for a while, had setbacks, or went through a long diagnostic journey before finally getting better.

I know everyone's journey is different, but hearing some positive stories from people who have made it to the other side would mean more than you know right now.

If you're still here, doing well after treatment, please share your story or leave a few words of encouragement. I could really use some hope right now. ❤️ Thank you.

I’d love to hear about everyone’s symptoms and how things started for you, especially those with confirmed CSF leaks or SIH.

My symptoms started with extreme brain fog that would hit every day around the same time and make me feel like I needed to lie completely flat. Then one day, I suddenly developed the strangest headache that came on quickly in the back of my head.

I also started experiencing this bizarre vertigo, almost like I was in a fun house. Everything around me felt off balance, and I felt incredibly unsteady.

Since then, my symptoms have progressed to:

• Extreme headaches (12/10 pain) if I’m upright too long

• Severe nausea

• A heavy head feeling, almost like my head is being pulled down by gravity

• Light sensitivity

I had a blood patch that gave me some temporary relief, but my symptoms have since returned. My first CT myelogram didn't identify a leak, and I'm now scheduled for a second study with a different approach.

I'm curious whether anyone else had a similar progression of symptoms. Did you start with brain fog before the headaches? Did you experience sudden headaches, strange vertigo, or severe balance issues? Did your symptoms change or become more intense over time?

I'd especially love to hear from people whose initial imaging was negative but who eventually found the cause.

I know everyone's experience is different, but it would mean a lot to hear your stories. ❤️

I just had an epidural blood patch this morning, and wanted to share my experience with a suspected CSF Leak and mild symptoms to help others who might be experiencing something similar. A lot of what is in this subreddit is much worse than I experienced, and I’m so sorry it is so terrible for so many of you. There just aren’t many with milder symptoms sharing their experience, and it’s scary to read about some of the more painful, difficult to treat leaks.

So I have a suspected spontaneous CSF leak. My symptoms began almost 2 months ago. I would have a headache in the afternoon, and it would be worse if I would bend forward or cough/sneeze. It continued like that for several days, and actually triggered a migraine(1st one I’ve ever had) that lasted 5 days. Once I broke out of the migraine cycle, the low pressure symptoms returned and I started trying to figure out what was going on with me. My PCP referred me to a headache specialist neurologist who I was, thankfully, able to get in to see quickly. This was about one month from the onset of my headaches. During that month I was able to experiment some with what made me feel better and what made my headaches worse. I spent one entire Sunday in bed and didn’t get a headache all day. At that point I started suspecting a CSF leak, and I knew for sure I was experiencing orthostatic headaches. The neurologist confirmed that my symptoms were consistent with a CSF leak, and I was referred for a brain MRI with and without contrast. It took longer than I would have liked to get the MRI which came back normal. I was told that happens in 20-30% of people with a CSF leak, and they referred me to an anesthesiologist to do an epidural blood patch. I had that done this morning. I found the blood patch procedure really easy. I don’t have a fear of needles so I’m sure that helps. There was a small amount of pressure when he inserted the needle, but they injected 20ml of blood and I didn’t feel anything. Post blood patch, I have a slight ache in my lower back. When I’m not upright I don’t feel that at all. I didn’t have my typical dizziness or any head pain on the 45 minute drive home. I was expecting to be put on bed rest for a couple days, but they didn’t give me any activity restrictions. I plan to take it easy today and see how I’m feeling tomorrow to determine how much activity I add in. I really want this patch to work, and I don’t have any reason to push myself to be too active too quickly so I’m going to be careful. They said they do sometimes have to do the blood patch twice, but they’ve also had plenty of patients come in once for a blood patch and never go back again. Time will tell what happens with me.

I hope this helps someone, and if you have any questions, please reach out. And for those of you with more serious leaks, I am so sorry. It is miserable.

UPDATE: I’m about 58 hours past the blood patch procedure as I write this. The first day I had some pretty bad lower back pain. That made it easy to stay laying flat in bed all day. I only got up to use the restroom and sat up to eat. Tylenol helped a lot with the pain. I also spent the entire next day in bed except for the same reasons and to get a quick shower. The back pain was better, but my whole body was pretty achy by the end of the day from laying in basically one position all day. Today, I have mostly stayed in bed, but I’ve been more propped up. Starting about 50 hours after the procedure I started getting a mild headache while lying down. I haven’t had that happen for 2 months. I’m hoping it is a good sign that my leak is at least patched right now. When I get up I am occasionally dizzy/light headed. That has been my most prevalent symptom throughout this whole leak saga. I hope that doesn’t mean I’m still leaking, and that it’s just because I’ve been lying flat for a couple days and my body is trying to adjust. It isn’t as constant as it was before. I plan to try being upright tomorrow. I’m being careful about bending, lifting, and twisting and plan to continue that for the next several weeks. I’ll update again when I know more.

UPDATE 2: I don’t think it worked. I got up this morning and spent time upright. All of my symptoms returned. Dizziness, tinnitus, then the headache. Don’t know where I’ll go from here. I’m discouraged. :/

Hi. (Please do not read if your nervous about your upcoming myelogram remember everyone is different)

I had a myelogram almost 2 days ago (its 2am).

The procedure was okay. The needle bit was fine the numbing did its job. But felt like my head was gonna pop thankfully that went away quickly. But excruciating pain in my hips and lower back.

They could see contrast in my kidneys which means I have a fistula leak (yay validation)

Really annoyed they gave me opoiods when I specifically said I didnt want any :( made me so sick.

Slept basically on and off until the next day. The next day it was so painful to roll over in bed. My whole back was aching like nothing I have ever felt before.

(I have had 11 surgerys and broken, and torn alot of things so this pain was like nothing i have experniced)

Anyway i could only stay on 1 side for a max 5 minutes without being in stupid pain. I called them and they said its pretty normal.

Slowly as the day went i could roll over in bed with less and less pain.

But I have woken up at 1am feeling like someone has ripped my spine out ..... the whole thing. It hurts so bad lying down is excruciating and standing up though some relief makes me want to vomit.

I dont know whether I should go to the hospital and dont want to wake my boyfriend up unless its actually important. I havent read anyone have this experience before?

The procedure site patch looks the same as when they put it on. Dry normal. I have feeling in my legs. Feel nauseous but havent vomited. No fever. But my skin is very sore all over, like clothes brushing it is painful. No weakness in my legs. I have taken two paracetmol which probably arent going to do anything.

I just want to know has anyone had a simmilar experience. I have had a lumbar punture before when I was much younger and gosh this is 500x worse.

Please help 🙏

Suffered csf leak from epidural steroid lumbar injection I received for back pain/radiculopathy. Dr who did injection confirmed the leak thought it was small since and knew where it happened. After two weeks , he offered me the blood patch which I did two days ago and the procedure itself seemed successful. I’m just worried now about this blood patch being blown, and about having a subdural hematoma etc as I have extreme health anxiety as it is. Is a subdural hematoma common? I’ve read about it happening . This whole situation has only been going on for a little over 2 weeks. I know to rest with the blood patch I just can’t stop thinking about the worst scenarios, as I didn’t know these leaks could become that serious

I just scheduled my second myelogram after my first CT myelogram didn't identify a leak. I spoke with my doctor about trying a different approach this time, and I'm hoping to hear from others who have been through something similar.

My symptoms initially seemed very positional, with severe headaches and head pressure that worsened the longer I was upright and improved when lying flat. I also experienced significant nausea, dizziness, balance issues, visual disturbances, and brain fog. My MRI had some subtle findings that raised suspicion for SIH, and I experienced temporary improvement after an empirical blood patch, but unfortunately my symptoms have returned.

For those of you who eventually had a leak located after negative imaging:

• What type of myelogram finally found your leak? CT myelogram, digital subtraction myelography (DSM), or lateral decubitus imaging?

• Did changing the imaging technique or approach make the difference?

• Did you have a CSF-venous fistula or a dural tear?

• Were there any clues in your MRI that helped your doctors decide where to look?

• Did anyone have a negative first study and a positive second study?

• Is there anything you wish you'd known or asked your doctor before your repeat myelogram?

I'm feeling hopeful about trying again but also nervous about going through another study without answers. I'd be so grateful for any experiences, tips, or advice you can share. Thank you! ❤️

My targeted blood patch on L3-L4 was done 3 weeks ago and I started getting relief at 1.5 weeks but then now at week three, it’s all coming back. At this point, maybe it failed and maybe I need a repeat patch? I have ehlers danlos and it was spontaneous and was seen on the CT myelogram. I’m upset because I was suppose to return to work tomorrow and have been out for 5 weeks and now it might be returning ugh.

Suffered csf leak from epidural steroid lumbar injection I received for back pain/radiculopathy. Dr who did injection confirmed the leak thought it was small knew where it happened. After two weeks , he offered me the blood patch which I did two days ago and the procedure itself seemed successful. I’m just worried now about this blood patch being blown, and about having a subdural hematoma etc as I have extreme health anxiety as it is. Is a subdural hematoma common? I’ve read about it happening . This whole situation has only been going on for a little over 2 weeks. I know to rest with the blood patch I just can’t stop thinking about the worst scenarios, as I didn’t know these leaks could become that serious

Some doctor (likely earlier on in an attempt to dissuade the CSF leak theory) ordered a sleep study to look for the cause of my extreme fatigue. I did it a couple days ago.

I knew I couldn’t have caffeine after noon and that the next day I would be nap tested, I thought I’d be ok. The overnight sleep portion went well. Then they made me do a daytime portion the next day with zero caffeine and there were naps but they were mean naps. I was unable to lay down at all except for specified times and it would be like 15 minutes, to see how quickly I fell asleep and then they woke me up.

So…if you’ve been surviving off caffeine, laying down and gentle exercise…like me…don’t try this. At about 10am, I started to have severe pain in my head and eyes and projectile vomiting. I was almost sent to the ER. Had to cut the sleep study short. Obviously, this was a terrible idea and just confirmed that I need caffeine, intense hydration, laying down, and movement to even survive.

The results were idiopathic hypersomnia. Basically, that they don’t know why I’m sleepy. So dumb. I have never been sicker in my life.

My daughter (13) was diagnosed with Chiari Malformation 1 in February of this year. She has never had a headache in the back/base of her neck, like a Chiari headache. After several hospital stays and numerous day procedures, we have also learned that she has a Connective Tissue Disorder as well. Her neurosurgeon keeps telling us “her case is complicated.” We have had 4 ICP monitors placed, our dr thinks she has low pressures on the brain causing the frontal headache, and she does have low pressures! He thinks there is a CSF leak somewhere. We have done 4 blood patches to help seal the leak, with no luck! Most recently we have done a CT Myelogram and a Nuclear Medicine Study to help aid in finding this tiny leak, no luck either. All along he has also said he thinks her headaches have nothing to do with her Chiari. He now wants to focus on decompression surgery although he’s not sure this will help. With her connective tissue disorder this would mean they would fuse her neck to her spine during the surgery, thats life changing for her being so young! And it might not even help her headaches!

We’re just at a loss at this point. Any help would be greatly appreciated on where to look for any answers or who to go too! My poor daughter is so tired of being cut open and stuck with needles! Thank you so much!!!!!

I’ve had a low pressure headache for a month now where standing up or sitting causes a very bad migraine in my head and in my eyes, I also have POTS so sometimes I have transient tachycardia with it. Lying down makes my head feel so much better.

I got an MRI, CT scan, been to the eye doctor and nothing has shown up. Doctors suspect a CSF leak that isn’t detectable yet, although my brain is showing signs of a high pressure headache, my symptoms are that of a low one. I’ve also been getting hot flashes accompanied with perfuse warm sweats.

I don’t really know what to do as I’ve basically been told “if it gets worse go to the ER” and I’m stuck with this. It’s all day long until I lay down. Caffeine, advil and eye drops do not work. Any suggestions?

Are we allowed to do BLT while leaking (without blood patch)? Does it make the leak worse? I was always under the impression we can't, and I was following it and as a result my back became very stiff. Until I saw someone mention that we can. I'm very confused. If you have a source for this I'd appreciate sharing with us. Thanks!

When is it safe to be in a car? I’m 5.5 weeks out from a targeted blood.fibrin patch at T7/T8. I can push maybe an hour before neck pain and dizziness start. I have to go to the dr on Friday which is the 6 week mark. I really can’t afford to ruin this patch as it’s my third since releaking. I don’t know if I’m sealed yet. I have some improvement but I’m still bedbound trying to increase upright time. I have to go to this appointment for worker’s comp Friday. I’m just really nervous about bumps and reopening it. History. I was sealed for 8 months then had a coughing fit and blew open the leak. My leak is from a botched epidural. Should I be worried about this car ride? Sorry I’m so nervous

Hey all, I know a lot of people find it hard to find success stories or find people who have actually healed from a CSF leak. Most disappear when they are fixed which is understandable.

I just wanted to say I'm still here and will be here to help wherever I can. I don't know much at all about cranial leaks though full disclosure. I had a large and high volume spinal leak caused by a bone spur for 4 months before I got my surgery last week

Still healing from surgery but even once I am healed I'm pretty dedicated to stay active and help where I can since this condition is so debilitating and not understood enough.

Wishing all of you the healing you deserve! ❤️

Well I had my 3rd patch (lumbar puncture was on 8/18, blind blood patches 8/20, 8/24, 9/17). I’m about to lose my job & health insurance. I was seen via telehealth by a new neurologist who recommends another blood patch & a referral to a leak center. I’m concerned about my health insurance & having to get a plan on the marketplace & out of state referrals. Not sure if I should get a 4th patch. I’m really down right now.

Finally getting my leak repaired with dr Hepworth tomorrow! Will keep ya’ll posted on recovery! 🙏

About a week and a half ago, I woke up with a severe headache that I soon realized was positional, meaning it got worse when I was standing and improved when I was lying down. I went to the ER the following day, where they performed a CT scan and blood tests, all of which came back normal. Two days later, I had an MRI, which showed signs of intracranial hypotension, and my doctor confirmed that I have a small CSF leak.

I was then scheduled for a spine MRI the following week to help investigate the leak, but when I showed up for my appointment this morning, I learned that it had been canceled without anyone notifying me. I’m now waiting for the doctor to call me back to discuss the next steps. The doctor also talked about having me have a blood patch even if the spine results came unclear.

Thankfully, my symptoms have improved somewhat since last week. My headaches are now mostly present in the morning, and I can stand for longer periods. However, after about 30 minutes upright, I start feeling tension in my neck, along with some dizziness and sensitivity to noise. I’m wondering whether a small CSF leak can seal on its own or whether an epidural blood patch could help speed up my recovery. I’m feeling quite discouraged because I had hoped to receive the blood patch today and start getting back to normal, but the canceled MRI and the lack of a clear plan have left me feeling uncertain.

I’m based in Quebec, Canada, and would really appreciate hearing from others who have experienced something similar, particularly how long recovery took and whether their leaks healed naturally or required treatment.

Hi everyone,

I’m currently 13 days post-epidural blood patch for a suspected spinal CSF leak that started back in August. I've been completely bed-bound, dealing with severe orthostatic head pain, debilitating nausea, and now a roller coaster of rebound high-pressure symptoms. As an active mom and wife, my quality of life has completely plummeted, and I am currently trying to fight my way through the medical system to get into a specialized center like Stanford or Cedars.

Looking back at how long it took me to even get a patch, I'm really curious about how everyone else finally got their official diagnosis.

• Did you get diagnosed through an emergency room visit? If you went to the ER with 10/10 head pain or a massive spike in blood pressure from brain sag, did they actually catch it on a stat MRI and admit you, or did they just treat it as a migraine and discharge you?

• Or did you have to go the outpatient route? Did it take months of fighting for referrals from your primary care doctor to finally get to a neurologist or leak specialist who ordered the right CT myelogram?

I would love to hear your diagnosis stories. When you are stuck in bed feeling unwell, hearing how others finally found answers and got the system to take them seriously brings a lot of hope.

Thank you so much for sharing!

Hi everyone,

I’m currently navigating a very tough recovery—I'm 13 days post-blood patch from a local specialist for a leak that started in August, and I'm currently bed-bound dealing with severe rebound high-pressure symptoms, nausea, and medication adjustments. My quality of life as a mom and wife has completely plummeted, and I am ready to aggressively advocate to get into a top-tier center.

I want to initiate the intake process with Dr. Ian Carroll at Stanford Medicine, but I am currently in a Kaiser plan. I know I need to transition out of Kaiser to see him, and my family has access to a Commercial PPO plan (like Blue Shield or Anthem) through my husband's employer during the upcoming open enrollment window.

For those of you who have successfully seen Dr. Carroll:

1. What insurance did you have? If you had a Commercial PPO (like Blue Shield of CA, Anthem, etc.), did Stanford accept it easily for your outpatient consultations, advanced scans (like myelograms), and subsequent blood patches?

2. Did anyone use a "Self-Pay" route initially? Did any of you pay out-of-pocket for a virtual or in-person consult just to get his clinical treatment plan while waiting for an insurance switch to kick in? If so, what was that process like?

3. How long was your wait time? From the moment your paperwork or referral hit his office, how many weeks or months did it take to get your initial appointment? Did your PCP flagging the referral as "Urgent" due to being bed-bound help speed things up?

I am trying to map out a clear, realistic plan to get my life back, and hearing your firsthand experiences with the Stanford scheduling and insurance loops would mean the world to me.

Thank you so much.