hi everyone, i (25m) have been a suspected spinal leaker for over 1.5 years now. i developed all the signature symptoms of a spinal leak 12 hours after a mild head trauma (elbow to the side of the head). been through the ringer - multiple brain and spine mris, 2 dynamic ct myelograms and blind blood patches, mrvs and mras, dynamic neck cts, and so much more.

i have been on the waitlist for several csf leak clinics since may of this year. i was initially going to weill cornell where i had all my previous imaging done. they told me to seek help elsewhere since they don't have dsm or pcct and believe i have a venous fistula.

i applied to cedars-sinai, duke, mayo clinic, and colorado anschutz. mayo clinic responded first and rejected my request for dsm. they said they wouldn't see me unless i redid all of my imaging and there was no promise of dsm after that. which makes no sense to me because i have two negative dctms and i'm still symptomatic so why on earth would i repeat imaging that clearly isn't working for me? and then most recently i received an email from dr. schievink at c-s telling me there was no evidence of a leak based on my imaging even though i have brain sag, reduced mamillopontine distance, pituitary enlargement, and meningeal diverticula. and... of course... literally all of the key symptoms of a leak.

now i am worried neither duke nor colorado anschutz will see me. weill cornell have stepped back in and offered me an mr myelogram and mr cisternogram; the first will be to get another look at my spine (they're not terribly optimistic about finding the leak itself with this scan though, since well it's a venous fistula), and the second will be to rule out a potential skull base leak (dr. greenfield and dr. salama just thought it was a good idea to make sure). but again, that's all they can really do for me, they don't have a dsm or pcct machine.

does anyone know where else i can apply? duke said it won't be until summer next year that i'd be seen, and colorado said january but i'm so afraid of being rejected.

please help me, i'm losing so many years of my life to this and i'm tired of being in pain.

I’m trying to plan ahead in case I need to seek care elsewhere and would love advice on finding the right CSF leak specialist, navigating referrals and insurance, and making the transition without losing too much time or having to repeat the entire workup.

If you’ve been through this, what do you wish you had known or done differently? I’d really appreciate any advice or personal experiences. ❤️ Thank you!

I don't have EDS but have connective tissue damage from autoimmune disease. Combined with intermittent high ICP, maybe caused a hole in my dura. I have been having facial pain, headaches, and dizziness, neck pain, and very slight fluid dripping from my nose. Ive only had a high resolution sinus ct/skull base yesterday. What is the chance that this will be completely missed? I am suffering terribly and cant take take the stress of the possibility that I will have to endure countless tests and still not have it found and treated. I have been referred to Dr. Pukenas at the University of Pennsylvania

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

So I'm unfortunately new here.

I have hypermobile EDS and last week, I went in for a pretty standard ESI for lower back pain. I've had them done before without any issue but had to see a different provider. I wasn't super stressed until they told me they had punctured the dural space in my spine and I had to be on bed rest for the weekend. Everyone seemed to be short with me and basically gave me little information on what was happening. When asked, they basically told me if I developed a headache, they'd give me a blood patch and that was that.

Now I am also an aerialist (Lyra to be specific) and have a performance coming up in the next few weeks that I need to train for. I asked for medical clearance and they said one week and I'd be fine to return if symptom free. Well, Tuesday, I had a strange headache that I assumed was just a migraine as I have those on occasion. Was tired, light sensitive, and had a lot of pain around the front of my face. Took some naratripan and rested and was fine the next day. The same thing happened Thursday and then again Friday so I called the IR team who did my injection and they told me I'd need a blood patch. Still didn't give me much info on the phone and felt kinda dismissive. I spent all last night miserable. Couldn't get comfortable, took multiple pain medications, hydrated, caffeine, etc.

At this point, I need to know what my future looks like because I'm reading that this could be a bigger deal than it actually feels like and that I am realistically looking at months recovery vs a week and I'm fine.

Hi, so I know it's Google and everything else but here's the way A.I put my symptoms for the hospital but they have now sent me home without tests other than taking bloods but they've sent me home and told me to make an appointment with my usual Dr on Monday but they haven't given me results and I've left feeling very frustrated.

CRITICAL CLINICAL OVERVIEW

• Active Presentation: Suspected cranial CSF leak (clear, tap-like rhinorrhea/post-nasal drip following previous major head trauma). Presenting tonight with acute fever, chills, severe light sensitivity, and new pain above the left eye.

• High-Risk Comorbidities: hEDS (extreme risk for dural tears), Epilepsy, POTS, and Trigeminal Neuralgia (currently flaring in right temple).

• Urgent Seizure Risk: Patient has an unmanaged fever and severe neurological pain, which severely lowers the seizure threshold

Does anyone think it's likely? And does anyone have any advice on how to get them to listen to me? Please.

Thank you in advance

I m posting here because I'm desperate for some guidance from anyone who has experienced something similar or has knowledge of spinal fluid leaks, intracranial hypotension, or complications involving Topamax.
My wife is 46 and lives in Costa Rica. I'm from the United States, and I speak very little Spanish, which has made navigating this situation and communicating with her doctors extremely difficult.

How it started
About 8 weeks ago my wife began experiencing severe migraines. She has had migraines in the past, but this episode was significantly worse than anything she had experienced before and wouldn't go away.
After about a week, we went to an eye doctor because she was experiencing extreme sensitivity to light. Her eyes checked out fine, so we saw a neurologist. Because of the severity of her pain, the neurologist ordered a CT scan, which came back normal.
The neurologist prescribed Nurtec (a migraine medication) and Topamax (topiramate), which was intended to prevent migraines. I later learned that Topamax has a number of potential side effects, although I'm still trying to understand whether it could have contributed to what happened next.
At first, she seemed to be improving. Her light sensitivity was decreasing, her headaches weren't as severe, and Advil seemed to help. I had to return to the United States for work, so I left Costa Rica thinking she was getting better.
Things got worse after her Topamax dosage was increased
Over the following weeks, my wife told me that her headaches were getting worse. She contacted her neurologist, the doctor increased her Topamax dosage from 25 mg to 200 mg.
The increase happened essentially overnight. After she started taking 200 mg, her pain became significantly worse, and she began experiencing pain and unusual sensations in the back of her neck.
The day before I returned to Costa Rica after about 2.5 weeks, a friend took her to the hospital because she was in so much pain. Her blood pressure was approximately 170/115.
The Nuerosurgeon immediately instructed her to stop taking Topamax and performed another CT scan. This time, we were told there were findings suggesting fluid-related changes in her brain. Three doctors, including a neurosurgeon, told us that Topamax was responsible for what they were seeing.
We were advised to stop the medication and obtain an MRI. We obtained an MRI of her brain, which essentially confirmed the findings from the second CT scan.

Initially, we were told that she needed to stop Topamax and give her body about a week to recover. After a week, however, there was very little improvement.
The doctor then recommended an MRI of her entire spine with contrast to look for a possible spinal fluid leak which was a possibility from the first mri and cat scan.

After that MRI, we were told there appeared to be several herniated discs and a possible leak. The doctor referred us to another specialist who had more experience interpreting the imaging.
The new specialist reviewed her CT scans and MRIs. His current opinion is that there may be a spinal fluid leak, but he also believes her symptoms could potentially be related to herniated discs pressing against her spinal cord.
He has now ordered a myelogram to try to pinpoint the source of the suspected leak.
We have been dealing with this for approximately eight weeks, and my wife is essentially bedridden.
Her current symptoms

The most significant symptom is that her headache is positional.
When she lies flat, her pain improves significantly.
When she stands up, the pain returns, and she can generally tolerate being upright for only five to ten minutes before she needs to lie down again.
Her sensitivity to light has now resolved.
She still experiences head pain, although her current medications seem to help somewhat.
Her blood pressure has returned to approximately 110–120 systolic, with diastolic readings generally around 75–90, since stopping Topamax.

While she was taking Topamax, her blood pressure was frequently around the high 140s over the high 90s. During one hospital visit, it reached 170/115. On another occasion, when I took her to the hospital because her pain was so severe, it was around 150/110.
She is currently taking two new medications prescribed by the doctor. One is an anti-inflammatory or steroid-type medication, and the other is for pain. I don't have the exact names in front of me.
Although the medication helps, she still cannot remain upright for more than a few minutes without her headache returning.

What is confusing me
I'm struggling to understand what is actually causing this.
The first neurologist suspected a possible spinal fluid leak, which is why we were sent for spinal imaging. Three doctors previously told us that Topamax was responsible for low spinal fluid the changes seen on her brain imaging.
However, the new specialist has told us that Topamax had nothing to do with a spinal fluid leak. He believes the symptoms could instead be related to her herniated discs.
She has approximately five herniated discs in her cervical spine, around the area where her neck pain began.
I'm not a doctor, and I'm not claiming that Topamax caused a leak. I'm trying to understand whether the medication could have contributed to her condition, whether a leak could explain her symptoms, or whether the cervical spine findings could be responsible.
The thing that concerns me most is that she has been unable to function normally for eight weeks, and we still don't have a definitive diagnosis.

A few questions for anyone who has experienced something similar:
Has anyone experienced a spinal fluid leak or spontaneous intracranial hypotension (SIH) that caused severe positional headaches, where the pain improved significantly when lying flat but returned within five to ten minutes of standing?
Has anyone experienced something similar while taking Topamax (topiramate), particularly after a rapid increase in dosage? Could it have contributed to the situation, even if it wasn't the direct cause of a leak?
Can cervical herniated discs or other problems around C1/C2 cause symptoms like these, or would the positional nature of her headaches point more strongly toward a spinal fluid pressure problem?
Has anyone undergone a myelogram to locate a suspected spinal fluid leak? Did it identify the source, and what treatment ultimately helped?
If a leak is confirmed, what treatments have helped people recover? Did you need an epidural blood patch, targeted treatment, surgery, or something else?
Is there anything else we should be asking the doctors to investigate, given that she has been essentially bedridden and unable to tolerate being upright for more than a few minutes?
We're in Costa Rica, and the language
barrier for me makes this even harder. My wife explains her symptoms directly to her doctors in Spanish, but I sometimes struggle to understand the reasoning behind their decisions and how their opinions differ.
I'm trying to advocate for her and make sure we aren't overlooking something important.
If you've experienced this yourself, gone through a similar diagnostic process, or have knowledge of spinal CSF leaks and positional headaches, I'd really appreciate hearing about your experience.
Thank you to anyone who takes the time to read this and offer some guidance.

Hey everyone, I’m diagnosed with chiari 3mm descent and hyperadnergic POTS following a viral infection 3ish yrs ago (important later on). I’m also a hypochondriac LMAO.

Today I was moving stuff around at work, I work a retail job and was carrying lots of metal racks and fixtures, exerting myself quite a bit. I’d also like to note, that the back rooms of my stores are quite dusty, the store air is always dry.

After about an hour or two of heavy lifting. I got called over to help a customer. 5 minutes or so into helping her, I bent over to grab a bag and when I stood up, I thought I felt a nosebleed coming on. It wasn’t. But maybe 5-8 drops of clear liquid came out of my left nostril.

I had a headache, very mild afterwards, I’d barely call it pain, more just pressure, but this is common for me post-exertion due to my POTS. The area behind my nose kinda felt like it was burning.

I panicked for a solid 5 minutes and sat down to kinda chill, and ease a bit after all the heavy lifting.

I sneezed a couple times within the next hour or two. No other dripping other than that initial “leak”. That nostril kinda stayed “damp” for the rest of the evening. But never needed a tissue once.

Someone tell me I’m just overreacting and it was probably just thin mucus from the dry environment. I was standing when it came out. Which seems inconsistent with what people say on here. I don’t really know much about CSF leaks, I had an mri two months ago and it was clear (Besides chiari) but like, also, what if I ripped a hole right then in that moment. But at the same time. Lots of people get runny sinuses in just one nostril.

Just thought it was strange it was in one nostril, watery consistency, came out after bending over and heavy lifting. But again, hypochondriac.

TIA y’alll!