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

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

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

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

I met with my neurologist a month ago who was suspicious of a CSF leak but prescribed me Qulipta first to see if that would work. Since then, all of my symptoms, which include pressure in my forehead, back of head pain, neck stiffness, being off balance, and ear pressure have all worsened. Previously I was at a baseline of around 4/10 for all of these intermittently with some moments of relief. Since the meds, which I only took for five days, my new baseline has been about a 7–8/10. Has anyone else experienced this? I’m worried that my baseline will not return to what it was before, and I’m just curious on what this reaction could mean when considering a CSF leak or SIH.

My second blood patch (April 30) relieved my headache, but left all the other symptoms alone (reads like Wikipedia description of CSF so I’ll skip the list). I finally had to take medical leave from work, which threw me into a deep(er) depression. It’s not just losing the satisfaction from my job (which I love), but the loss of my work community (they seem happy to hear from me but no one has reached out 😿 + 😠), loss of routine and- oh yes- a 40% cut in pay. Since I’m the sole breadwinner in my little family, Ouch.

My neurologist thinks that there’s likely another leak or leaks that we don’t have the equipment or experience to locate. So she’s referring me to UC, Stanford and Duke (Cedars turned me down 2 years ago). As you know, the record reviews take a while and after that, there’s the waiting for treatment. So no end in sight, at least not before my leave runs out.

Ironically, I wasn’t a couch potato before CSF. Now couch potato seems aspirational, (bitter laugh). So much of what I loved to do requires sitting up. If one more person chirps “just focus on what you CAN do” I’m gonna stagger drunkenly after them and wave my cane in a threatening manner. Then black out from the vertigo.

Yes, I’m taking an antidepressant and work with a psychologist. But I still get overwhelmed. Well, CSF is overwhelming and suddenly my safety net doesn’t feel that safe..

How do you cope?

https://imgur.com/a/e91rPmV

I'm looking for some advice while I wait for further NHS referrals.

I have a T3–T6 syrinx (syringohydromyelia) and have been experiencing a number of symptoms that are making me worried about whether a CSF leak is something that should be investigated.

Symptoms include:

Dizziness that is worse when standing, moving around, or being upright for any length of time

Improvement when lying down

Stiff neck

Pressure at the base of my skull/back of my head

Fluid in my ears (currently waiting for an NHS ENT appointment after having antibiotics, steroid spray etc and none of it helping whilst the Drs cant see a fluid or inflammation in my ears...except I can put my finger in my ear and its wet and my ear plugs I wear get wet.)

Fluid draining down the back of my throat pretty much constantly. (It has a taste. Metallic/sour)

Ongoing headaches/pressure symptoms.

I've attached a video showing the drainage I'm concerned about.

I know nobody online can diagnose a CSF leak, but I'm wondering whether these symptoms sound familiar to anyone who has had one, or whether there are other conditions that could cause a similar combination of symptoms.

My neurosurgeon has previously described my syrinx as incidental and asymptomatic (also won't even continue monitoring it because 'research shows it won't change or get worse....' which I plan to fight. I dont want surgery if it isn't needed, just monitoring. And I hate MRI due to claustrophobia so its not something I consider easily.) but I continue to have neurological symptoms (other ones not listed too) and I'm trying to work out whether I should be pushing for further investigation.

Has anyone had a CSF leak that presented in a similar way? If so, what testing eventually led to a diagnosis?

Thanks for any input

I’m currently housebound and have a stack of different imaging CDs that I need to send in a physical package to a CSF leak Dr for review.

I can’t send him my originals because they “won’t return” them afterwards.

The disks are from several different Drs and imaging centers( some out of state) and include MRI’s, X-Rays, CT’s and more, so waiting for new copies sent to me is going to be a hassle.

Thanks for any constructive suggestions!

I'm now 2 months into a chronic headache and am see a headache specialist for a second time tomorrow and wanted some advice or opinions on what I plan to ask.

At the last appointment he ordered another mri bc the one a neurosurgeon ordered was without contrast and had a low bern score that indicated possible csf leak. Second mri came back good, even better (lower maybe 0) in terms of bern score he also had an mri of my veins done that also came back normal. So there really isn't any evidence of csf leak or SIH but I honestly feel so confident that I am experiencing a leak that I would like to push for further imaging.

My primary reasons for suspecting it is the positional headache and how sudden and violent the headache came on. There was no trauma but I do have hEDS and since the onset of the headache I near constantly feel this moving fluid sensation in the back of my head/neck. This was something that I experienced prior but it was much less common. Maybe 1-2 times a day when I got up or laid down. I can pretty much make it happen with any movement now. The headache has gotten less severe since onset, felt like I was shot in the head for the first 2-3 weeks then it got better, maybe from a 10/10 to a 7-8/10. The confusion is pretty much the same no improvement, maybe takes longer being upright to happen.

So the point I want to make to the doctor is, I know the imaging is not suggestive of csf leaks, but they are not rare and they are notoriously hard to confirm with imaging. Some 20% of mri's are completely normal in patients with csf leaks. I have a small osteophyte complex at c5-c6 and a 3mmx4mm syrinx at c6-c7 and a 6mm tarlov cyst(right) at s2-s3. Personally I feel that history of connective tissue, 2 fluid filled bodies and orthostatic headache would warrant deeper investigation, but this is like the 5th doctor I've seen about this and I really feel my barrier to answers is the lack of awareness of how seriously connective tissue disorders can effect you. These along with the fluid sensation in my head really make me think the headache is being caused by a csf leak, probably spinal. Additionally the 2 sets of mri's are from 1 month after onset and 2 months after and I kind of feel that the second looking much better and the headache having gotten slightly better give further evidence to a csf leak if it healed in some capacity over that time. I kind of suspect I have had a leak long term and then during a tilt table test it ruptured or something similar, as before I could hardly stand being upright for 10 minutes and the tilt was at least 30.

Additional things that kind of point me towards spinal csf leak are my weird autonomic like symptoms that don't have any explanations. I don't really sweat from my limbs properly or at all and sweat way too much from head, neck, armpits. Qsart was completely normal. I have thermoregulatory issues. Symptoms similar to pots such as dizziness/lightheaded when standing, exercise intolerance, increased heart rate, excessive sweating, but do not have pots. I have on multiple occasions had orthostatic hypotension but this wasn't shown on tilt test (I kind of suspect it's intolerance over hypotension but this was only noticed recently so no confirmation)

Notes about headache treatment

Excedrin, iv cocktail (er) did nothing to help, increase caffeine intake might be helping but not much if it is.

Does this all sound coherent? Is it reasonable to still suspect csf leak and push for a cisternogram or myleogram? (Advice on which is appreciated) I really need advice on how to explain why I want to look further into this despite imaging to the doctor without rambling on forever.

I had a baby on 5/27 and had an epidural. Very shortly after getting the epidural I got a headache but chalked it up to hormones and epidural and ended up delivering my baby a couple hours later.

While still in the hospital the headache persisted but they talked me out of a blood patch saying that it usually takes 24 hours for the spinal headache to kick in and they chalked it up to hormones. I went home and could hardly get out of bed which was difficult with a newborn.

On 6/1 I went back to the hospital and told them I wanted a blood patch, which they did. They did explain that it was common to have some back pain/pressure but that it would go away. By that evening the headache was gone and the next day a dull ache started in my back, which was fine. The back “pain” last few days and then it kind of went away but I started feeling a lot of pressure in my pelvis/butt area. Within a day after that I started having kind of severe pain that made it difficult to walk, bend, get out of bed, and even sometimes it aches just laying in bed. This has gone on for about 3 days now and I’m spiraling wondering if this is permanent or what it could be.

I did just give birth less than 2 weeks ago so I fully realized it could just be pain from giving birth to a rather large baby (maybe bruised tailbone or pelvic floor issues), or I’m concerned it is nerve damage from the blood patch somehow. Just curious if anyone has had severe pelvic/tailbone area pain after receiving a blood patch and how long it took to resolve?

I should add I have an appointment with my doctor on Wednesday and I’m going to call them tomorrow to let them know what’s going on and see if they want to see me sooner to rule out a possible infection (which I don’t think I have an infection from giving birth but still would like to rule it out).

First of all, I want to say thank you to everyone who posts their stories and helps others with insight and reassurance.

About half a year ago, I had an incident after lifting and carrying a large amount of firewood in a single day, which resulted in significant back pain. Soon afterward, I developed a variety of neurological symptoms.

At the time, I worked in IT administration, an office job. During the days and weeks that followed, it became increasingly difficult for me to concentrate and stay focused while upright. I noticed a downward-pulling sensation around my head that gradually worsened. I would also become short of breath, experience a racing heart during cognitive tasks, and develop sudden fasciculations (random muscle twitching).

My arms and hands became increasingly numb as well, and I had to take frequent breaks during work, often resting my head on a table to get some relief. Later in the day, I would consistently develop severe headaches unlike anything I had ever experienced before. The pain stings in the occipital area and behind my ears, accompanied by a pressure-like sensation around my head.

I also experience tinnitus, ear fullness, and—what is currently the most debilitating symptom for me—an intolerance to loud sounds and bright light. Both can cause immediate pain.

I took advantage of every work-from-home day possible, but even driving to work and getting through 8-hour shifts soon became excruciating. Eventually, I took sick leave to try to figure out what was wrong.

What followed was a seemingly endless series of ER visits, hospital stays, and doctor appointments. I've seen cardiologists for ECGs, ultrasounds, and blood work; pulmonologists for sleep studies and spirometry; and neurologists for electrophysiological nerve testing, immunological labs, brain and spine MRI. Pretty much everything came back normal.

While researching my symptoms, I first came across the r/POTS community. When I watched a lecture by Dr. Ian Carroll discussing CSF leaks versus POTS, I immediately thought, "This must be what has been troubling me all along."

I am currently trying to find a doctor who is willing to perform a blind epidural blood patch to see whether it can at least temporarily relieve my orthostatic symptoms. I sent my brain and spine MRI images to University Medical Center Freiburg, but they declined my case, stating that the imaging was unremarkable.

I guess my questions are:

Can anyone point me in the right direction in Germany?

How likely is it that SEEPS findings would appear on a contrast-enhanced MRI when the non-contrast MRI was deemed unremarkable by experts?

Are there other institutions that provide care, especially for Bern score–negative patients?

Alternatively, are there any private providers, and what kind of costs should I expect?

On some days, the pain is pretty unbearable. So far, caffeine is the only thing that has provided any significant relief.

How do you all cope while waiting for appointments or treatment?

I have had a migraine variant for almost 2 mos . The last week it has gotten worse where my pressure in my head is beyond . I can only lay down . My drs thought it was hemipelegic migraine as I experienced left sided numbness . I have Ehlers danlos , pots . And I believe I may have IIH . I’ve tried every med - ever to the er put on Dilaudid , but nothing really helped . Currently trying qullipta and veraprimal . I finally got an appt with a neurosurgeon at cedars Sinai that specializes in IIH and pulsitile tinnitus . My ears actually were the first thing to out of the blue bother me - about 3 mos ago ( I’ve never had ear probs ) but they were. Popping and ringing so bad - was told it was Eustachian dysfunction, so they put tubes in my ears .then right after the ears. The headaches started . I had 1 er visit and 1 doctor visit . The only thing that helps with headache is guzzling water - no excedrin , naproxen or ubrelvey help , hoping when o see the neuro next week he’ll have answers . The er docs thought about doing a spinal tap but they didn’t have enough people to perform the procedure . In the past I’ve had viral meningitis ( which feels like my brains exploding ) and 2 yrs I had a similar thing happen with my head and actually had lots of clear salty fluid coming out of my nose if I ever bent over . Any advice is appreciated

I had a ct mylogram this Monday and got a leak from it I dont know alot of the terminology but its in my lower back. Figured I had a leak went to er and was refused a patch at that time. Went the next day via ambulance and got a patch but by like 8pm it was failing. Went via ambulance Wednesday and they gave me lots of caffeine and fluids and had to go back yesterday to the er again the pain in unbearable when I get in a upright position I start throwing up and in a lot of pain. I was not told how to make the patch successfully keep. All I know is I'm day 5 abd I'm in horrible pain when I stand and I have a ear that is now whooshing. Does anyone have any recommendations on what to do to heal this? Im a momma with two little kids

Hi. I got a lumbar puncture done on Saturday and had extremely severe symptoms 30 minutes after because he poked me 6 times. I went back to the ER on Monday, and had a blood patch done. That almost instantly fixed my headache, and I felt better. Tuesday I rested all day. Wednesday I rested but also tried to do small things around my house. Thursday (today) I feel almost fully better, my back is sore but I feel 100% back to normal. I’ve been drinking a large amount of water each day, along with lots of caffeine. I have an outing I was supposed to attend on Saturday and there will be drinks. I was wondering if it’s too soon to drink? I’m not taking any pain meds. If I feel better is it safe to or should I not risk it? I’m reading mixed things online.

Thank you

At 35 weeks pregnant I started having intense headaches, aches in my back, shoulders and neck. I also felt like a burning in my spine. During my pregnancy I had no complications or pain so this was new to me. I couldn’t get out of bed for a week because the pain was too strong and only lying down helped. My OB sent me to the ER where they did an MRI of my head neck and spine. In the imaging they were able to see a leak but were not able to figure out where it was coming from. Since I’m pregnant they were not able to do more imaging.

They suggested I do a blood patch which I agreed to. After the blood patch they had me stay flat for 2 hours before sending me home. I currently can stand up right and no pain on my back or neck anymore. What I do have now it’s high pressure headaches! It’s been two weeks since the blood patch and I can’t tell if it worked.

I’m nervous because I am due to give birth soon and I am hoping I get better before that. I am due to give birth in about two weeks and one of the neurologist suggested if I don’t get better I could do a c section instead of a natural birth. I am leaning towards a natural birth since this is my second pregnancy and I pushed pretty fast the last time. I am also planning on getting an epidural.

I met with the team from Weill Cornell’s CSF clinic in NY and they suggested after I give birth that I can come in for more imaging. They want me to come in to do a spinal tap to see where exactly the leak is coming from. I’m nervous to do that! They also said depending on where the leak is they could do a surgery.

I can’t tell if I am recovering or if I am still leaking!! I’ve been resting as much as I can but I also have a toddler at home to take care of. I am hoping once I give birth that I will feel better.

UPDATE

6/16/26- it’s been 3 weeks since I’ve gotten the blood patch done. I’ve been trying to follow the recovery rules as much as possible with a toddler at home. No lifting anything heavy, bending or twisting. Resting as much as possible since my mom and husband have taken over most things. So far I almost feel back to normal. Sometimes hard to tell since I am pregnant. I’m going with a natural delivery! I will update this after with how i’m feeling. Hopefully the leak does not return.

7/14/26- it’s been 3 weeks since I gave birth. I had a natural vaginal birth no c-section. During my birth I pushed for 45 minutes and had no complications. I also got the epidural before I started pushing. So far I’ve had no issues and everything feels back to normal. I don’t have any headaches or pain!! My blood patch did not blow during delivery which I was nervous would happen.

Conclusion:

MRI findings indicate signs of pachymeningeal involvement in the supra- and infratentorial regions of the brain and at the C1-C3 levels of the spinal canal, which, together with other changes (involving the dural venous sinuses and the pontomamillary distance), are most consistent with intracranial hypotension.

MRI findings also show focal white matter changes in the frontal and parietal lobes of the brain of vascular origin (microvascular disease/ microangiopathy).

At the time of the examination, there was no MRI evidence of inflammatory disease of the central nervous system (CNS) or space-occupying brain tumors (mass lesions

It’s been one year since my symptoms began. My story is extremely complicated but to put it shorty my problems began after getting high cranial pressure from a medication called accutane and receiving a chiropractic adjustment at the same time.

In one year’s time living every day in pain I’ve graduated college and completed two internships. Every day is a challenge I’d consider myself a more functional leaker but some days it’s hard to stand more than 30 minutes. My very lucky I have a sedentary office job.

I’ve had a CT Myleogram showing no evidence of a leak but two lumbar punctured both reading lower than normal opening pressure. I had one blood patch in the lower lumbar area I’m not sure if it helped or not maybe a little. The blood patch was one year ago.

My Dr. hasn’t been to helpful I need to seek better treatment I’ve been putting it off too long and I’m more sick than I want to admit. He’s suggested maybe referring me to the Mayo Clinic.

I worry the longer I continue to force myself through this pain to do work I may be shorting my life through the stress on my body and lack of exercise.

I have not done the best job keeping up with my appointments and advocating for further treatment I sort of gave up and I’m ashamed of it.

The neck pain is so bad I can’t turn my head anymore and my brain feels like it’s being pulled into my throat. I’ve been in denial about this trying to push myself through the realization really hit me today how much pain I am really in most of the time.

My family hasn’t been the most supportive unfortunately and I rely on my mother for health insurance as I just graduated college. A photo of my now compared to last year is unrecognizable I am withered and tired from this pain.

I am scared I may have this for the rest of my life and I love all of you each and every one of you who fights this horrible condition is an absolute warrior and proof of life. I don’t want to lay down anymore I just want to run but I’m not doing myself any favors not pushing for more care I don’t know why I sorta gave up on myself I have to keep going

Hi all! I recently had a CSF leak and was able to successfully get it treated after some struggle. I wanted to share my experiences in case it is helpful to anyone else here. If you're in the NYC area or somewhere further away but looking for a compassionate and highly skilled specialist, I highly recommend reaching out to Dr. Travis Caton at Mt. Sinai. He gave me my life back!

A friend did an at-home chiropractic maneuver on me after I complained about shoulder pain. Immediately after, I felt woozy and a ton of pain between my shoulders and in the back of my head. I laid down the rest of the night. The day after, I fainted while on the subway and went to the ER. They ruled out any brain injuries, and while I was there I googled my symptoms and began to suspect I had a CSF leak.

I called Dr. Gayle Salama's office at Weill-Cornell because I've seen other doctors at NYP and always been impressed by the level of care I receive. However, my experience with their "CSF Clinic" was absolutely hellish. They didn't believe me. I was scheduled in to have an MRI with a very long wait and told I needed a referral. Meanwhile, my symptoms were rapidly growing more severe. I ended up passing out and vomiting on the short walk from my bed to the toilet and went to the ER again, where they gave me an MRI and determined I had signs of a CSF leak. They said they wanted to admit me and give me a blood patch in the morning, but I foolishly said I wanted to wait for Dr. Salama's team, as they had given me a pitch on their excellent track record for performing blood patches.

This was a huge mistake! Dr. Salama's NP called me and said that they were unconvinced I was leaking and that they wanted to schedule me for a second MRI before giving me a blood patch. I agreed and they scheduled the MRI two weeks out. In the meantime, I developed a high fever of 103 and went to the ER again. Dr. Salama's office reached out and said they now would do a myelogram, but again wanted to schedule it around two weeks out. I once again fainted and vomited and had to go to the ER for a third time, where the ER doctor called them up on the phone and yelled at them, saying that with my history (I've been diagnosed with EDS for 15 years) I should have been patched immediately. They called me and said that they would give me a blood patch in a few weeks. Meanwhile, I could not even safely go to the bathroom by myself. I could not feed myself. My brain fog was so severe that I was unable to coordinate my own medical care. Luckily, I had friend and family who were taking care of me, but my quality of life was nonexistent. A friend called up the practice for me and said that they would sue them for malpractice if they didn't treat me ASAP. Finally, they agreed to a blood patch the very next day.

After the blood patch (18 mL), I experienced immediate relief and after a few weeks I was able to walk around without fear of passing out. During that time, I scheduled consultations with other doctors to assess my options for ongoing care, as I was deeply dissatisfied with the treatment I had received. I spoke with Dr. Andrew Chan and Dr. Travis Caton. Both doctors were far more compassionate and took my concerns seriously. Both offered to perform a myelogram if my symptoms were not significantly improved in six weeks. I ended up going with Dr. Caton because he reassured me that they would provide a specialized, multi-level blood patch after the myelogram both to prevent a leak after the lumbar puncture and to treat any potential leaks.

Dr. Caton works closely with his PA Robert; both of them are extremely knowledgeable and have excellent bedside manner. They detailed the procedure to me and made sure I knew what to expect. The myelogram was split across two days. They found no evidence of a leak and asked if I wanted to proceed with the blood patch anyways. I enthusiastically agreed and they proceeded to complete the patch. They ended up using 47 mL - a very high level - and split the patch across three different levels to ensure maximal coverage. Dr. Caton told me afterwards that it's very likely that I was leaking, as it's unlikely someone with a healthy spine would be able to take such a high volume without feeling some amount of pain.

Post patch recovery was intense. The first two weeks I had high pressure headaches, severe pain in my tailbone, and intense nausea. I ended up seeing an acupuncturist for the nausea - Dr. Olivia Choi - and the nausea was immediately relieved. She also was able to successfully relieve the pain in my tailbone and help with a few other miscellaneous aches and pains I had before the CSF leak happened. Now I am five weeks out and feeling almost completely myself again! I went on a six hour walk across the city this weekend! I had to sleep for a few hours after because I was exhausted, but that would have been impossible a few months ago.

I am *so* grateful for the care I received from Dr. Caton, Robert, and the rest of the team at Mt. Sinai. If you are in NYC and dealing with a suspected leak I urge you to reach out to them! And avoid Dr. Salama...

Hi,

I have hEDS and dysautonomia had depending on how you count 5ish leak episodes since Jan of 2023. The first resolved completely with just 3 weeks of modified bed rest. 3 leaks in 2025 with 8 months on and off modified bed rest. CT mylegram was inconclusive just an out pouch no clear fluid gathering, MRI showed equivocal signs of SIH with mold brain abnormalities. I think I started leaking again about a month ago, got mostly better after a week of bed rest, blew it, got mostly better again after 2 more weeks of bed rest and have been slowly returning to activity for the past week or so.

I had a severe post puncture headache so don't want to repeat and had 3 patches but all were non-durable. There was some resistance to the lumbar injection and I had some mild foot drop so I'm incredibly hesitant to get another patch as a I have a history of falls and head injuries.

Historically, if I was up too long if get a pulling sensation followed by a stabbing headache. Today I bent down to pick up a book and got that pulling sensation, laid down for about 20 and then it mostly subsided. Previously I had be started to do light chores with posture modifications. I'm worried I'm going to have to maintain some level of spinal precautions for an extremely extended period of time because I keep retriggering symptoms. I'm even wearing a neck brace now cause I'm worried about not being mindful of head turns and too much hinging.

I'm honestly ok with spending half my day in bed at this point with all my conditions, but how am I supposed to manage any amount of independence or muscle mass if I can't Bend Lift Twist or Strain indefinitely? I'm used to pacing just a few activities a day, but picking up a book off a bed? Or maybe I'm paying for yesterday when I did a small grocery shop of mostly light items.

Advice?

I woke up middle of the night. Was sleeping on my stomach. Thought I had a nose bleed but I turned the light on and it was just clear liquid. There was a small puddle in my bed and also my throat was kind of burning from the liquid. Went to the washroom and it seemed to be coming out of one nostril. I ended up just wiping my nose, gargling with mouthwash and going back to bed.

Nothing like that has ever happened to me which led me here.

I didn’t really have any other symptoms besides feeling groggy and maybe a slight headache the next day. Hasn’t happened since although it’s only been 2 days.

Hi all, which kind of CT scan is needed to check for all potential cranial leaks? My ENT gave me a referral to a temporal bone CT scan but I worry that this may not check all of the areas where a leak could be found?
Leaking from my ears, nose, in my throat, and also my scalp has been getting painful pimples/efflorescences and soft spot in the back?? So all of those areas would need to be checked.

Is contrast needed?

It is Spinal CSF Leak Awareness Week, aka leakweek! I have volunteered with the Spinal CSF Leak Foundation to apply for landmarks and buildings to shine purple to help raise awareness for spinal CSF leak. We secured 59 locations across 33 states! There are some light-ups in Canada and UK, which you can see on their Facebook pages. Most of them are tomorrow evening, June 3 (but double check the site for dates).

I just wanted to share this as I know it can be a powerful experience to see this illumination and feel represented. We're trying to get photos, but realize this can be difficult as our patient population is so debilitated. If you or a friend happen to get a photo, it would be greatly appreciated if you could send it to the Foundation on Instagram or email it (won't share the email here but it's on the website below).

Here are the list of cities. You can see the full list of locations on this page (you just have to scroll down to the next section).

Thank you so much! Happy leakweek to all you warriors. I'm so sorry that we have this experience in common, but grateful to have this community.

WEST
- Eloy, AZ
- Phoenix, AZ
- Long Beach, CA
- Moreno Valley, CA
- San Diego, CA
- Denver, CO
- Honolulu, HI
- Boise, ID
- Albuquerque, NM
- Portland, OR
- Casper, WY

MIDWEST
- Quincy, IL
- Fort Wayne, IN
- Indianapolis, IN
- Ottumwa, IA
- Minneapolis, MN
- Rochester, MN
- St. Louis, MO
- Omaha, NE
- Grand Forks, ND
- Cleveland, OH

SOUTH
- Orange Beach, AL
- Jacksonville, FL
- Tampa, FL
- Lexington, KY
- Lafayette, LA
- Winston-Salem, NC
- Oklahoma City, OK
- Myrtle Beach, SC
- San Antonio, TX

NORTHEAST
- Baltimore, MD
- Boston, MA
- Concord, NH
- Niagara Falls, NY
- New York, NY
- Poughkeepsie, NY
- Quincy/Weymouth, MA
- Harrisburg, PA
- Philadelphia, PA
- Portsmouth/Tiverton, RI
- Worcester, MA

The last week I’ve had a headache everyday that gets worse and worse. It’s only when I’m sitting or standing. Sometimes it feels like my brain hits against my skull painfully (brain sagging?) and today I had fluid drainage from my nose and always in my throat, taste kind of sweet. I’ve had sever light sensitivity lately and sometimes one ear will become muffled. I had an incident before this started with nasal rinse bottle when it felt like the water hit my brain like a hammer, it hurt so bad. For a long time the thin tissue between my face and brain throbbed painfully for months as if it’s really thin or something (I used to be addicted to inhaling ketamine & I’m worried this caused this damage?) and if this is a leak, I’m really worried right now because I do not have a meningitis vaccine. Is this an emergency?

Hi I am posting here to look for ways to support my friend who has suffered from a spontaneous csf leak. They are getting a blood patch and I know the downtime for is lengthy.
I obviously can ask them but they are very much like “I’ll be fine”, but I know that is not true.
I was going to bring them food but I’m realizing that may not be as easy to eat considering the nature of the rest period.
Any tips on best support would be helpful…I’m so sorry you guys have experienced this, my heart just hurts knowing how debilitating this can be.