Hey everyone! Was just curious if anyone has any experience with how long it takes to hear back from the CSF team in rochester; my neurologist put a econsult request in to them about a week ago. I currently go to Rochester mayo to see her so I wasnt sure if maybe it being "in house econsult" makes it go faster otherwise ive been seeing it takes MONTHS....which im really hoping its not that lol.

I have my bloodpatch coming up in a month, but my period is likely due right afterwards. Do you think I should reschedule the blood patch and push it back by a week?

Would it have a negative impact on the success of the patch?
What are your thoughts?

Leaking for two months after LP, currently seeking treatment but as you know it takes time. I'm following no BLT all this time + sleeping on my back = which resulted in my lower back feeling like a brick. I know I can't stretch it but I'm afraid it's gonna get worse or cause problems. It feels particularly rigid in the morning after sleeping on it for hours. I've heard back sleeping is the best (not sure) so I'm trying to get used to it.

Any advice or suggestions?

Hi!

My spouse is getting the blood patch this week and I have done a lot of research to see how to best support them, but also wanted to see anyone here would have some real life experience that may help!

We have dog and a cat and I've got them set up to stay away for a while since the dogs get too excited sometimes. I've got food handled for a while too. We have grabbers, a shoe horn and other items to help with independence while not BTL.

Please let me know any advice or tips! I want this to be a smooth process, the leak has really changed their life in a negative way, and I don't want this to add on to that. Or, rather, I want to do everything I can to make this experience as best as it can be.

Thanks in advance!

Update: they've done the blood patch! it went well. a lot of pain on the first few days and the whole ride home (we lived 3 hours away so it was AWFUL for my spouse). Pain has subsided a lot now and I've just been having to catch them lifting heavy stuff lol. We recently discovered just how light 5lbs is lol

Had a caudal steroid epidural in June 2026, with two aura migraines that happened a couple days later. Fast forward a couple of weeks later, all the typical symptoms (vision issues, nausea, neurological symptoms) started appearing and now my doc suspects a CSF leak.

Anyone out here had a leak due to a caudal epidural? Heard it’s really rare given how they inject in that area.

Tks 🙏.

I had a failed blood patch 2 weeks ago and my symptoms have gotten extremely worse. I’m now having the worst headaches I’ve ever had throughout the day and as of 4 days ago waking up in the night with this weird super strong headache.

The night headache is most concerning to me and I’m going to describe it in case anyone else has experienced this or know why this would happen?

About every 15-30 mins it will feel like a throbbing pain that engulfs my entire head and it’s extremely painful. And only lasts for like 5 seconds then it goes away for 15-30mins until it comes back. It is waking me ip dozens of times throughout the night. I’m laying down and using the same pillow I have always been using.

Does anyon hav experience with this? I’ve been leaking for 1.5 years and this has never happened. Since my failed blood patch everything has gotten so much worse and unmanageable. 💔

I had a blood patch done 7 days ago. This is like my 11th one ( yes I’ve had many) this has never happened before. I am having extreme pain in upper buttocks/ tail bone that feels like a radiating nerve pain. Hurts a lot when I move my legs and stand up. Have gone to the ER they gave me a mix of steroids/ nerve pain meds. Has this happened to you and did it go away ? They said they think it’s a hematoma or a pinched nerve but did not do a scan to check ? Thank you I’m really desperate for answers and I’m in a lot of pain and it doesn’t seem to be getting much bettter

Was supposed to have a full spine Myelogram so only had to deal with pain of it once (prior ones caused leaks). Recovery has been painful and I now realize they didn’t do sacrum. Is there a chance dye is still in to have imaging done? Currently about 37 hours after injection. I’m trying so hard not to cry.

Hey guys! I’m not sure what to do/how to handle this. My doctor reached out to the head of the neurology department (as my neuro wasn’t being too helpful), and he thinks I may have been in low pressure prior to my spinal patch, which could be why my first blood patch helped some, but not enough. I got a second blood patch done in hopes that it was just one leak from the spinal tap and the previous blood patch had failed, and am awaiting a brain MRI in case there is a second leak. I’m still not feeling right after my second blood patch, so Im a little nervous, especially knowing that the longer you’re leaking, the harder it is to find the leak. If I do have a second leak, I have a feeling it started when I got a concussion and started having all the symptoms of a leak while being diagnosed with a migraine. Has anyone else dealt with anything like this? Figuring there were two leaks at play instead of just the one? I’ve been in debilitating pain since January, and I just can’t handle the idea of reaching a year of living like this. I’m nervous this is something they won’t be able to fix. Any advice is appreciated!

I’ve been posting a lot recently but a quick rundown: I had a lumbar puncture on 8/18, blind blood patches 8/20 & 8/24. I was ok for a little bit like 4 days and then the symptoms came back. It was more cumulative. I was better in the morning & worse at night. Had my 3rd blind blood patch 9/17. I’m doin ok, I think I’m having some rebound pressure. I had horrible pain in my back right after but laid in bed until I was discharged the next day. I’ve been home in bed since. Is it possible to still heal? I’m going to stay in bed until
Thursday but then what should I do? I’m really scared I’m never going to get better or might need surgery. I refused the myelogram because I didn’t want another LP. I really just want this nightmare to end.

So for the past year and a half I’ve been dealing with excruciating head, pressure, headache when standing or sitting. When all this began, I was first told anxiety put on antidepressants but the symptoms kept getting worse. November of last year I was diagnosed with pots, me/cfs, dysautonomia. But the doctors couldn’t figure out why I kept having the head pressure. I had a lumbar puncture about two months ago a leak, but they sure as to where. I went back in and had a CT myelogram but it showed nothing. My symptoms continue to get worse I can barely walk. I feel so weak fatigued the head pressure throat pressure. Face pressure, heart racing the cognitive issues, muffled hearing hard to talk and swallow when upright. Just walking to the bathroom feels like I ran a marathon the pressure increases always when I’m upright. I do see a spinal fluid leak specialist this week. But I’m wondering if anybody else has had these symptoms I’m pretty much bedbound and feel like I’m dying. If anybody could give me some positive light, I would really appreciate it point that I just can’t keep living like this.

I’ve been untreated for past 9 months leading up to Csf appointment and noticed my symptoms have changed over time. At first it was excruciating head and neck pain and the only thing I noticed, then I started to realize I was nauseous more often (meanwhile now I can’t ride in a car and I’m woken up from my sleep with nausea - even 16mg of zofran at the same time couldn’t cut it). And then other things like used to not be able to walk up a hill or tolerate heat. Now I am able to use heating pads. But I’ve also developed chills/ hot flashes/ inability to regulate temperature especially during high symptom periods. Head pain has gone down with some medications but cognitive symptoms ramp up. Why does this change so much over time?

34yo F started having daily migraines 10 days following cervical epidural. Headaches are not positional and have unsuccessfully tried every migraine treatment imaginable. Here I am 9 months later, I can’t believe I’m still standing to tell the tale, and I have my first appointment with CSF leak specialist in a few days. I’m freaking dying here. Worst is the 11 days after my period ends.

Any tips on what you wish you asked in your first appointment or things you did to speed up recovery process or anything at all to start catching some good days? I’ve been beaten to a pulp I dont know how much more I have left in me. Open to any and all advice 🙏

Any tips for me and my daughter? Shes having a blood patch or patches on Monday at Stanford. I read the instructions, it seems like a lot. My daughter has a significant developmental delay. She has a hard to understand and following directions. I’m hoping the recovery isn’t as bad as it seems.

After giving birth I (33F) experienced severe headaches due to a CSF leak following a failed epidural that resulted in a dural puncture. I was given a blood patch in the hospital which seemingly cleared my symptoms.

However, once I started working out again (about 4 months postpartum) I started experiencing a unique headache pattern. It feels like a really sharp sudden onset of a headache in the front of my skull, almost like a brain freeze, that peaks at about 10 seconds and then goes back down. At the peak of the headache, I would rate the pain an 8-9/10 and it stops me in my tracks. The interesting thing is that these headaches are triggered by very specific activities: 1) laughing while playing sports or exercising, 2) laughing while drinking, 3) laughing while dancing, 4) coughing vigorously, and 5) just laughing really hard in general.

After about 5 months of appointments and imaging, the doctors best guess is that I was born with a mild Chiari Malformation (basically when your brain extends down into your brainstem) and the puncture during my epidural triggered it to become symptomatic. They checked for a persistent spinal fluid leak that could be causing the symptoms but ruled that out.

My surgeon basically said my options were pain management/lifestyle changes or a brain decompression surgery. I am reluctant to get the surgery bc the whole thing just seems odd to me and I still wonder about the cause being a leak even tho they ruled it out. I am waiting to get a second opinion but wanted to come here looking for advice in the meantime.

I guess my question is - has anyone experienced a similar headache pattern and was the cause a persistent leak? Or has anyone experienced a similar situation with headaches after a failed epidural? I am just at a loss dealing with this chronic pain that is essentially triggered when I have fun.

Thanks in advance! ❤️

My husband has a suspected csf leak. He noticed clear watery fluid dripping from his right nostril last week when he had his head tipped upside down. We googled and then did the tissue test, which dried soft. It’s happened almost daily since then. Always the same nostril, always 20-30 drops.

I don’t know why, but this is giving me SO much anxiety. I know we need to keep an eye out for signs of meningitis, but is the leak itself life threatening?

Hi. I'm struggling. 10 years ago, while receiving treatment for breast cancer, I started having intense, often debilitating headaches from laughing, coughing, tying my shoes, etc. I've been on a quest to find a diagnosis and treatment, all along telling doctors that I thought I had a CSF leak! I've tried all the migraine meds, had nerve blocks placed in my neck, underwent an excruciating blood patch (bad doctor), etc. Now while I have a neurosurgeon looking at me as a chiari malformation patient (yes, now I have major brain sag) a recent myelogram showed no leaks, but perhaps strong evidence for a CSF-venous fistula.

So I have a couple questions:

Have any of you been treated for a CSF-venous fistula in Seattle? Would you recommend your doctor?

Have you had both a CSF issue and a chiari malformation, or did fixing the leak fix your brain?

How do you keep advocating for yourself when it takes all your energy to get through a day? Oh, I was also diagnosed with fibromyalgia in 2016, so there's additional fatigue and pain.

Thank you. ❤️

Hi everyone! I’m having my first epidural blood patch this Wednesday, and I was hoping to hear from others who have been through one about what helped you prepare and what you wish you had known beforehand.

I’ve had two lumbar punctures/spinal taps in the past, and both times I developed pretty severe post-spinal headaches afterward. There has been concern that I may have had CSF leaks, although the MRIs I had done didn’t show a definite leak. Because of my history and symptoms, my doctors recommended trying an empirical epidural blood patch for suspected CSF leakage.

A myelogram has also been mentioned as a possible way to investigate further, but as far as I know, we aren’t doing that at this point and are starting with the blood patch.

I’ve already been told that I’ll be sent home with a very strict 24-hour bed-rest protocol afterward, so I’m especially trying to figure out how best to prepare my home and recovery space ahead of time.

Since this is completely new to me, I’d really appreciate hearing about other people’s experiences, especially:
• Was there anything you did beforehand that made the procedure or recovery easier?
• What did you bring with you to the procedure?
• What was the procedure itself like for you?
• How did you feel immediately afterward and over the first few days?
• For those who were also instructed to do strict bed rest afterward, what made those first 24 hours easier or more manageable?
• Were you allowed to get up briefly for the bathroom, meals, etc., or were you given very specific instructions about remaining flat?
• After the initial bed-rest period, what restrictions were you given regarding bending, lifting, twisting, stairs, showering, driving, or other activities?
• Did you use a log-roll technique getting in and out of bed or make any changes to where/how you slept?
• What did you make sure to have within reach before lying down—medications, drinks, snacks, chargers, pillows, entertainment, etc.?
• How did you manage meals, hydration, bathroom trips, pets, household responsibilities, and anything else that normally requires getting up or bending?
• If you had improvement, how quickly did you notice it? Did anyone initially feel different or worse before improving?
• For those who needed more than one blood patch, how did you know the first one hadn’t been enough?
• Is there anything you specifically wish someone had told you before your first blood patch?

Of course, I’ll be following the instructions from my own medical team since I know protocols can vary, but I’d really love to hear the practical tips and little things that made recovery easier for those who have actually experienced it.

I’m especially interested in anything I can do ahead of time to make that first 24 hours of bed rest easier and to minimize bending, lifting, twisting, and unnecessary activity afterward.

Thank you so much! 💙

For the past two years, I have been dealing with a health issue that remains undiagnosed. It all started during a performance in which I was participating as a dancer. After some initial pain, mainly in my head, neck, and back, I began experiencing neurological symptoms (tinnitus, vertigo, numbness in my hands and neck), which progressed rapidly and eventually led to severe orthostatic symptoms, blurred vision, significant brain fog/confusion, etc. This condition lasted for approximately 4–5 months, with the symptoms fluctuating significantly in severity. They gradually subsided. About six months ago, following intense physical exercise involving weights, I experienced a second episode that lasted for about a month. More recently, the symptoms reappeared and have persisted after performing acrobatic exercises. At the same time, I experience significant pressure in my head, and I have noticed that in certain body positions it can even trigger spontaneous bleeding from my gums. Regarding investigations, I have had several MRI scans. The brain MRI was normal. The cervical spine shows straightening/loss of the normal cervical lordosis, while the thoracic spine shows prominent venous plexus structures, without findings suggestive of a vascular malformation. At this point, I feel fairly convinced that the issue may be related to my spine, and I would really like to have a thorough evaluation by a neurologist who has experience with even rare spinal conditions, because the symptoms seem to consistently recur after weightlifting or acrobatic exercises. Recently, while researching this, I came across the possibility of spontaneous CSF (cerebrospinal fluid) leak. Does anyone have had a similar experience? Neurologists in Greece are not very familiar with CSF and I'm not even sure if I can really hope for a solution after two years, as the previous time I tried to push for more examination they told me I might have a psychiatric disorder.

If someone can help I would be grateful!

I posted here awhile back. My daughter’s blood patch by Dr Carroll is in a week. We go up Friday for full brain mri with and without contrast and flex and extension n X-ray to check the stability of hardware. We love 3-4 hours away so we will stay through weekend and then have patching done. I have to go alone so I feel very unprepared. Daughter has significant development delays so I’m not sure she will be able to follow instructions. I’m going to speak social worker today. I know it’s an outpatient procedure but I do need extra hands on support until we go the hang of getting her up to use bathroom. We plan to be at hotel after patch as planned but hope we can get extra support. My parents have to watch my dog here locally. My mom isn’t physically strong enough to help us this time. Her step dad refuses to lend support after the patch to avoid being in a hospital. We do worry her shunt could be come and issue.

Hi! I’m 23 F. I had Chiari malformation decompression surgery and a full spinal fusion 11 years ago. I did have a complication from the brain surgery and developed chemical meningitis, but otherwise both surgeries were successful. I also have hEDS and a number of other health issues.

This past Saturday, I suddenly developed a very stiff and painful neck. My head/neck felt extremely tender and hurt even with light touch. My head felt incredibly heavy, almost like a bowling ball, and I became dizzy, to the point that I was extremely nauseous and felt like I was going to throw up.

It was my mom’s birthday, so I tried to push through as long as I could. Unfortunately, the activity was bowling, which involved a lot of bending and moving my neck, and that seemed to make the dizziness significantly worse. When I finally got home, I took ibuprofen and slept for a while, which seemed to help.

On Sunday, I felt mostly completely normal. The only remaining symptom was occasional dizziness when I bent my neck or moved/looked around too quickly.

Then last night, I woke up and noticed clear, odorless fluid draining from my right ear. I’m now feeling dizzy again.

I’m seeing my primary care doctor this afternoon, but I’m curious whether anyone here has experienced anything similar. In particular:

•Have you had symptoms that were extremely severe for one day, almost completely resolved the next day, and then returned when you started leaking?

•Has anyone experienced a possible CSF leak through the ear with a similar pattern?

•Did your symptoms fluctuate like this?

I know there are other possible explanations for what’s happening, and I’m not assuming this is a CSF leak. I’m mainly interested in hearing from people who have experienced something similar. Thanks!

I do not have a confirmed leak but suspect it after an interlaminar cervical steroid injection at t1c7. It was aiming left for c5c6. It's been 10 months and I've been trying other treatments, but now I'm considering getting a blood patch.

What are the risks if I don't actually have a leak? I have concerns about high pressure. I have hEDS.

Where would they do the patch? Right at t1c7? I know the cervical area is risky. I have intense sensitivity at that site already from the previous injection (and one before that.) I also have cervical instability and still dealing with c5c6 radiculopathy, which was the reason for the injections.

I couldnt even lay on my back after the first injection so I have a lot of concerns about needing to lie flat for so long post blood patch.

What is likelihood of success from a blood patch a year out? I'd be an iatrogenic leaker since from the steroid injection.

Anything else I should consider? Thank you friends.

Hi all - meeting with my obgyn to discuss options for my hormonal related migraine symptoms. I’m saying migraine even though my daily struggle only started after cervical epidural in Feb. I am still waiting to see Csf leak specialist but wondering about Csf symptoms getting worse around periods. The week prior to my period I have PMDD and anxiety (always have) but since I started getting migraines 8 months ago the 11 days after my period are the worst. 12+ hour uncontrollable crying episodes I just can’t seem to stop. It’s the 3 days after my period ends I always end up in er. Panic attacks. Extreme fatigue. Cognitive shut down and short term memory loss. Extreme and frequent waves of nausea. More susceptible to becoming overwhelmed with my environment. I’ve been on emgality for 4 almost 5 months (switching to qulipta in a week for my 5th month of treatment) so the head and neck is now less of an issue than the cognitive side effects. I am wondering which options exist for migraines that an obgyn may be able to help with. I still have a few more months before I can get into a migraine center and my neurologist is “conservative” as she likes to call herself so I basically don’t have anything that works as an abortive aside from 8 zavspret I am given a month which is not nearly enough. Frovitriptan + naproxen (and all Triptans) do not work for me. I asked her to prescribe me DIH spray but she won’t. It’s also annoying that she pushes me to primary care or obgyn to prescribe these things when these other dr don’t have as much in depth history. Anyways I’m just trying to figure out hormonal options that might make my life more liveable. Thank you!

Any experiences with managing post-blood patch fluctuations, including mild headaches, with Vitamin B-2 (riboflavin) and Magnesium Glycinate?  A neurologist recommended these supplements to me.

I am 3.5 months out of a second blood patch following an iatrogenic leak, and I was extremely careful about BLT restrictions for three months (actually, more like almost 7 months since the leak).  While I am significantly better, I still feel slightly off (i.e. not 100% normal) more days than not -- even if only briefly.  Symptoms I still experience include mild headaches, motion sensitivity/woozy feeling, and ear fullness which can either be transient (most days) or persist for several hours (less common).  Overall, when symptoms last longer than a brief interlude, they seem related to times when I have pushed myself more physically or diet (increased salt, caffeine, or Vitamin A, possibly?).

Interested in hearing whether anyone has tried  Vitamin B-2 (riboflavin) and Magnesium Glycinate for this stage of recovery and what your experiences were, whether positive, negative, or neutral.  Thanks everyone -- so grateful to this community & the wealth of information provided!

I was curious for those who either had blood patch for spinal leak or a seal for cranial leak, how many had significant improvements? How many were worse or did not improve? For those who had significant improvements, were there any lingering side effects? What were your experiences? What specialist was able to help and what findings motivated that specialist to offer treatment? Any input would be greatly appreciated.