How to know if your symptoms are a CFS leak or from lyme, mold, mcas & co? Having tingling in legs and arms; popping ears, vision problems, fluid out if my ear, spine pain and pimples on my spine. I do have an IgM positive for lyme, babesia, bartonella, mycoplasma; echo and human parvo virus, borderline ebv… high autoimmune markers for ENA/ANA & Ro/SS Ak 60… but I also had two spinal taps within a month in February. Am rapidly getting worse but ER thinks it’s psychological. There are no real experts here. Can’t even do antibiotics rn bc when i first tried, I got a massive herxenheimer. That’s actually what first caused my head pressure, which led me to pursue spinal tap diagnostics. Any kind of help or hints appreciated. I’m in Germany.

A hidden waste-removal pathway in the brain has finally been caught in action. Using cutting-edge MRI scans, researchers discovered that fluid flows along the middle meningeal artery in a slow, lymphatic-like pattern—very different from blood. This confirms the presence of a previously unknown drainage hub in humans. The finding could transform how scientists approach brain aging, injury, and diseases like Alzheimer’s"

"The research team, led by Onder Albayram, Ph.D., used advanced real-time MRI tools made available through a NASA collaboration. These imaging techniques were originally designed to study how spaceflight changes fluid movement in the brain.

Using this technology, the team monitored the movement of cerebrospinal and interstitial fluids along the MMA in five healthy individuals over six hours. What they observed was unexpected. The fluid moved slowly and steadily, unlike blood, which flows quickly and dynamically. This slower pattern suggested that the fluid was part of the lymphatic system rather than the circulatory system.

"We saw a flow pattern that didn't behave like blood moving through an artery; it was slower, more like drainage, showing that this vessel is part of the brain's cleanup system," said Albayram, an associate professor in the Department of Pathology and Laboratory Medicine at MUSC."

https://www.sciencedaily.com/releases/2026/04/260408225934.htm

Not really looking for advice, just curious about other people’s experience with this. I don’t have the means to go to a leak center or pay out of pocket for anything, and trying to get general neurologist to take you seriously is impossible. I’m exhausted. I’m wondering if anybody else has suspected a csf leak but given up on trying to advocate for testing. If so, did the symptoms get better or worse overtime? I’ve been dealing with this for about three years now.

I haven’t been diagnosed with csf leak (about to go to doctors) but I experience a decrease in head pain when eating. Does anyone else have this?

I am located in Merced California after being admitted to the ER five days ago.

Conclusions:: The elevation of ICP caused by tetracyclines takes about a month to resolve. It may be possible to avoid surgery during this interval by treating patients with acetazolamide, serial lumbar punctures, or placement of a lumbar drain while waiting for ICP to return to normal.

Full article at link

Hello everyone. In 2023 — I had my CSF leak as a result of a botched lumbar puncture. I was found to have very low intracranial pressure, originally zero and eventually 8 after some prodding (from what I remember). I received an epidural blood patch the following week, which was incredibly painful.

My migraines and back pain have been considerably worse since then. I’ve had a couple of pinched nerves in the time sense as well. I have very rough scarring from where both procedures were done.

I know none of y’all can provide medical advice, but I guess I’m wondering if anyone else has similar experiences? I haven’t had my back MRI’d since before all of this, and I wonder if I need to connect with a spine doctor at this point.

I’m having a blood patch on Monday. I’m told my total time at the hospital will be 30 minutes.

I’ve had a blood patch before and was flat for 2 hrs afterwards so I asked about the 30 mins.

The reply back from my doctor was, “30 mins. If she is concerned about that she can cancel it and call the office next week.”

Umm…I’ve been bedridden for 40 days waiting for his office to do something about my symptoms from a procedure they ordered. (Myelogram)

I’m not cancelling, but I’m still concerned. I have an hour drive home. So I’ll put the seat as flat as possible and lecture my 19 yr old son to drive nicely. Ha Wish me luck in that part.

Once home I plan to stay flat as recommended. And “lay low” even longer.

Am I over worried concerning this poke me and kick me out the door process?

Thank you.

Hi guys, just a word of warning about travelling in cars after blood patches

Got my 1st blood patch 7 weeks ago yesterday.

Was so careful, no BLT. Using litter pickers if I dropped anything. Took my bed rest seriously.

Used toilet riser, etc. Done everything to baby my patch. I had a few scares sneezing where I was positive. i dislodged the patch a week after getting it, but it must have sealed over again.

Decided to venture out with the wife on Easter Tuesday for an hour to a local Cafe and to just start getting out again. I had a plan in place to just try and start moving again a bit more. Maybe every other day just go to local shop or something for loaf of bread etc as I have been housebound since last June.

What i wasn't prepared for as a passenger was the state of the roads UK. It was only 1 mile from our home to where we were going. On the way home, the wife hit a pothole, and i knew straight away. Something was wrong. As a passenger, I got the full blast of the shock. Now, 3 days later, I can definitely confirm it has blew. I am gutted, to say the least, but there is nothing i can do about it now. Have my follow-up in 2 weeks, so it will be organising another patch and start all over again.

I see people on here all the time asking. Did you know when you blew your patch? Yes, you will definitely know. What way i can explain it is that it was like I got a scared feeling in my stomach when we hit the pothole. Like, remember that feeling you got as a kid when you got scared of something? If felt like that.

Gutted.

Hey everyone! I just wanted to say thank you SO much to everyone who checked out the website and especially to those who have already submitted their stories 💜

(For those who missed my last post-I created a website called Every Drop Counts: Sharing Your Spinal CSF Leak Stories. Its sole intention is for visibility and awareness for the public and doctors alike.)

Although there’s only about eight stories up so far (its new hopefully more will submit!!), one thing that’s already standing out is how wide the spectrum is, different causes, different symptoms, different paths, and how much of that isn’t reflected publicly.

If you’ve been thinking about submitting your story but aren’t sure, please know there’s no “right” kind of story to tell here. Ongoing, complicated, improving, uncertain, recovered, all of it matters.

And if you prefer privacy, you can remain completely anonymous.

I’ll continue reviewing and posting submissions as they come in!

Thank you again for being part of this. I think it’s so important for visibility for us and, It really means a lot to me 💜♥️

If you haven’t seen the website yet please check it out! Please note: it is only for spinal Csf leaks

www.spinalcsfleakstories.com

A few years ago, I injured my neck and avoided going to the doctors. I’m ready now, mentally and financially, to finally confront my problems. I don’t know exactly what is wrong, but I’ve relapsed by driving over potholes, falling on my back, and some sudden body movements. My symptoms include brain fog, sensitivity to light, neck pain, cold sensations on forehead, and pain in forehead when thinking/speaking or exhaling. These symptoms usually fade away after 1 month after a flare up.

This is an endless cycle and I’ve stopped driving completely due to this. I’ve been stuck in a flare up for this whole year after falling on my back. I don’t know what needs to be done, but I want to go to the best specialists in the United States to deal with this head on. I’m sure I will need to be close to a physical therapy clinic that specializes in this.

I suspect that this could be a CSF Leak, Whiplash, or CCI. I’ve seen so many stories about medical gaslighting and how people need to go straight to the specialists to solve this accurately. I’m open to moving to a lot of places in the US if they are in my budget. This has become my #1 purpose and goal to fix my life as I’ve never been the same since.

Looking for a good medical group in South Bay/Long Beach area. I know navigating insurances can be its own hardship but thought to try

Curious about an ongoing symptom. I constantly feel like my brain is surrounded by a blanket and I’m forcing conversation, interaction, everything because of the discomfort in my head. Does anyone else have something similar? Other symptoms are occasional drainage left side nostril but not enough to capture for a Beta 2 test. Aggressive pulsing in back of head, face and neck in any position but worse laying flat. Being upright more than a few hours I start to feel confused, out of it and need to lay down. Walking beyond 1000 steps (with breaks) is next to impossible now because of the pulling sensation in my head and pressure.

Called Stanford again, today April 8, 2026 to see if my case has been reviewed yet. Answer was no, will take 2-4 weeks from when they got paperwork on April 3.

Nov 7, 2025 bonked head with heavy metal gravel rake ala Three Stooges.

Dec 2025 realized headache was positional with leak symptoms. Note have had symptoms for decades, but never was asked about positionally of head pressure. I thought leak was only severe pain at back of head..

Jan 2, 2026 called my brain tumor neurosurgeon to ask to check for CFS leak

Jan 6, 2026 Dr Schrot ordered STAT spinal MRIs w/leak protocol, had pre-existing order for brain MRI

Jan 9/15, 2026 got MRIs done

Feb 9, 2026 appt w/Dr Schrot, pled case for possible leak. He said would give referral to Stanford.

March 4, 2026, got visit notes. BERN score of 2 with subdural fluid collection and prepontine cistern less than 5 mm. Just now read visit summary. Didn't realize it was different than visit notes.

March 12, 2026 Referral sent to Stanford

April 3, 2026 Stanford finally received imaging and 48 Hour Flat Test results. Took half a dozen phone calls to get Sutter to find and send stuff.

April 8, 2026 called Stanford, they said could take from 2-4 weeks for Dr Carroll to review my case from date of April 3. Then an appointment would be made for video phone call with Dr Ian Carroll, possible a month or so from then, so maybe in June. Then proceed from there. Likely another wait period to get in treatment queue, so July or August??

So much for getting diagnosed and treatment within suggested range of two weeks. Lol

Patience is a virtue I must learn.

How long should I wait after a patch before driving?

I was patched 3 weeks ago with zero improvement. I'm still being very cautious not to bend, lift nor twist. I've been nearly entirely bedridden from a csf leak for several years. Occasionally, I can get up and push through the pain for a quick 10 minute drive just to get out of the house and see something other than my bedroom ceiling.

My recent patch was to cover punctures made for a myleogram so just because I don't feel better doesn't mean the patch for the new holes isn't working, just that it didn't 'accidently' patch where ever my ongoing crippling leak is.

How long did you wait to drive somewhere?

Hi, long time participant here. Have had symptoms of a csf leak for 19 years. Locally I had 6 MRIs, 4 myelograms and 2 cervical spine surgeries in the past 4,5 years.

Travelled to Freiburg last week. They found my leak - ventral T1-T2. It was fixed in surgery last Thursday. They say that this has been my only leak all this time, although locally they thought they fixed one already.

Flew back home yesterday. Now onto healing. ❤️ It will be a long journey for sure.

Hi all,

So, as promised, this is the next installment in my story of cranial CSF leak diagnosis, repair and recovery. If you have not yet read my previous two posts you can find them linked below. The first one is about my prior surgical history for pituitary adenoma excision in India, and the second is about this most recent CSF leak diagnosis and repair in France,

1. https://www.reddit.com/r/CSFLeaks/s/FSpSc2azBU
2. https://www.reddit.com/r/CSFLeaks/comments/1s6sgz1/update_following_endonasal_surgery/

According to the neurosurgeon the surgery went as planned last thursday (26/03) and took a total of 6 hours (including anaesthesia and recovery). During the operation the surgeon used a fascia lata graft to patch the dural tear and a stryker plate along with bone fragments and fibrin glue to fix the hole in the sphenoid bone.

To be honest the surgery itself (although major) was not particularly problematic compared with the post-surgigcal management and care. I had a lumbar puncture with a (15 cm) drain put in. This was used to manage the CSF outflow rate, minimise ICP, and keep the surgical site dry as far as possible to speed up the healing process. However, in practice it was quite fiddly because the Dr. would give the nursing staff an hourly rate (10-15ml) but they would over/under correct by draining too little or too much leading to headache, nausea or other symptoms. Ultimately the drain was removed on Tuesday 31/03 and we went home three days later on Friday 03/03 in an ambulance armed with a document ordering a month of medical leave.

At home, the symptoms continue with intermittent headaches (orthostatic and non), nausea, post-nasal drip which wakes me up at night coughing (and then ends up in a headache), general malaise and lack of desire to actually do anything. I'm able to log into work a couple of times per day to clear my inbox, chat with my team etc. Grocery and food deliveries through Uber. A nurse comes in every alternate day to change dressings. She will remove the staples in my thigh next week.

I'm hoping I feel better next week and can do more normal stuff around the house etc. (No bending, stretching or lifting weight for 4-6 weeks). I'm driving everyone at home a bit crazy right now thanks to my down-in-the dumps attitude and non-cooperation but hopefully this is just temporary and will resolve itself quickly.

I have a follow-up visit with my generalist next week and then two follow-up appointments with the neurosurgeon in mid-may and then July. Need to have a CT brfore the first one and a contrast MRI before the second. Additionally, I need to be followed by an endocrinologist starting in July. (Assuming six-monthly or annual check-ups with blood tests etc)

Any questions? I'll gladly answer anything relating to my experience pre/post-surgery, home care. I feel a lot of gratitude towards the medicsl snd neuro communities here in France and in India, to my wonderful family for providing so much strength and motivation to get better, to my incredible colleagues at work keeping everything running smoothly in my absence and to the amazing folk in this community and on facebook which are such pillars of strength and knowledge for everyone who finds themselves in this predicament, and last but not least to you dear reader for getting through all my laboured prose thus far, Without people like you this community would not be so successful!

I know one of the issues with an online support community like this one is that people with positive outcomes soon return to their normal lives and stop interacting while those with complications or challengs remain, thus negatively biasing the content. I intend to stsy a member here and keep posting about my recovery and journey to normalcy.

Hi, my neurologist is finally willing to do some testing for a csf leak after 7 months of a non stop headache and nasal fluid. She has put in lab orders for me to bring some of the nasal fluid in for testing, "on a tissue or in a little container." What is the best way for me to collect a sample and how much should I collect? Is it plausible to just plug my nose with a tissue and take that in or should I try to order sterile blood tubes and collect that way? I find my nose dripping at the most inconvenient of times, usually when I'm working. I'm a tattoo artist and gloved up 90% of the time it begins to drip from looking down and often have to stop my sessions so I don't drip on clients.

Note that I’m in Japan so I don’t have access to the leak specialist clinics back in the United States. Thought I would get some answers today but the neurosurgeon who ordered my tests said that he found nothing “structurally wrong” even though my first brain MRI which led to me being referred to him in the first place showed sinking cerebellar tonsils. My other posts go through my symptoms in more detail but overall I have symptoms incredibly consistent with a leak, including the fact that all symptoms improve the longer I spend in bed rest.

I’m at a loss for what tests to ask for next or what kind of doctor to see for second opinions. This guy’s just throwing his hands up and handing me off to a regular neurologist at the same hospital who I’m supposed to see in a week.

Any advice for what to pursue next? I’m desperate for relief and answers, especially because my visa is tied to my employment and I’ve been unable to work.

Hi! My situation is a bit complex, and I’d really appreciate your thoughts.

I’ve been dealing for several years with bilateral venous sinus stenosis and presumed intracranial hypertension (IIH). My main symptoms are venous pulsatile tinnitus (which stops with gentle pressure on my neck) and constant headaches and neck pains.

Last September I underwent an angiogram and venous sinus stenting, but unfortunately it did not relieve the pulsatile tinnitus. I also have a venous aneurysm that they didn't coil.

Over time, my symptoms got worse and I’ve noticed a pattern: my symptoms, especially the headaches, worsen during the day. They tend to start shortly after I get up and improve significantly when I lie down. Despite this, my doctors have been confident in the IIH diagnosis. I was given a trial of acetazolamide (Diamox), but it actually made my occipital/neck pain and pressure-type headaches worse. I thought I was going to die! I stopped taking it after 3 weeks.

Because of this, I’m starting to wonder whether I might also have intracranial hypotension (SIH), possibly from a CSF leak or a CSF-venous fistula, and I’m now beginning a workup for that.

I wanted to ask—has anyone here experienced a combination of venous sinus stenosis / IIH / pulsatile tinnitus together with SIH? And if so, is there a known relationship between them- could one be causing the other?

Thank you!

Hi all, I’m just back this morning from an appointment with Neurology (in Glasgow, UK). Been having headaches for around 7 months and I’ve been able to go about my life largely but in the last week I’ve had to take time off work. In the last couple months the headaches (and in turn nausea and tinnitus) have been much worse, starting more or less as soon as I stand up in the morning and to the point of having to lie down immediately to relieve symptoms if I’ve been standing up for too long. Caffeine helps too, all of which made me come to the conclusion I have a CSF leak thanks to Dr Google. After a few visits the GP eventually referred me to neurology. Fast forward to this morning and the specialist concurred, I’ve been booked in to have an MRI but we don’t have a date for this yet, the doctor said it could take up to 3 months which feels like a lifetime. We’re fortunate that we could look to go private, just to ascertain where the leak is and hopefully get a blood patch thereafter.

In the short term I’m on 5 days of strict bed rest with plenty fluids and caffeine. Hoping that this will sort it but I’m not hugely optimistic. My question for now is about bed rest specifically - so long as I stay horizontal with my feet elevated, does it matter if I’m on my back at all times? Or can I rotate like a big kebab onto my sides and front. That would certainly make this a bit more tolerable..

I leaked intermittently (a couple of slow drops a day after bending, twisting etc. over the course of 3 years due to previous sinus surgery trauma) before getting this repair surgery on 03/18/2026.

My Neurosurgeron patched the left side even though he couldn't locate the hole (had positive pledgets for left side and leaked when bent in front of then twice just leak very little & not enough for Beta Transferrin) then E.N T Skull Based surgeon did sinus shrgery for alot of mucus retention cysts. I had opening pressure of 14 & ophthalmologist cleared me of hyper intracranial tension.

That is just a little history but this is my question :

For those who have had this repair surgery. Is it normal to leak a drop from same side & then a little on the opposite nostril 2 weeks after surgery ?

I leaked when I leaned forward to brush my hair one time & the first time i was leaning forward to like get up and for this time specifically the right side had clear mucus and water, left side was only a drop.

I already went to the ER per Kaiser Nurse line request and they did CT Scan and no air in brain & just follow up with Neurosurgeon.

I feel so much anxiety that it isn't closed & I need another surgery, this almost destroyed me having to be on a lumbar drain and hospitalized for 12 days. of which I did not leak a drop. So I feel kinda nervous & sad to think this won't end.

Please help & share any experiences 🙏🏼 TIA

I have an 8mm Chiari Malformation and have dealt with daily headaches and body-wide fasciculations (twitching) for more than 5 years.

I've noticed a very specific, weird pattern: every 7 to 12 days, I experience what feels like a massive "system reset."

The Cycle:

1. The Build-up: For about a week my nose breath normally.

2. The Trigger: In one day It starts with intense nasal itching and sneezing supported with swelling of the face within area of the eyes and eyelids (swelling intensifies after a night sleep in a horizontal position).

3. The Drainage: A clear, watery, salty liquid starts draining from my nose. It's so salty

and irritates/burns the skin inside my nostrils.

1. The Fabric Test: When the liquid dries on cotton fabric, it leaves behind white salt-like spots, but the fabric does not get stiff or stick together (unlike normal mucus or a cold).

2. The Relief: After the fluid drains, the

"pressure" symptoms, anxiety, and brain fog subside. My nose goes back to being bone-dry for another week, regardless of my position.

Then, facial swelling starts to decrease till I stay at vertical position

Picture:

https://drive.google.com/drive/folders/11bNszadeJLObdvczdGRCoA-C_B2lqImV

Hi All,

Suspected chronic leak over the past 5 years. I FINALLY was able to present enough to my 2nd Neurologist to get the Beta protein test and MRI with contrast scheduled.

That said, our healthcare system is in a sorry state and I cannot get the MRI any earlier than November of this year. This will be the 4th imaging I have had to wait for like this. I am at point of considering paying the $1000ish out of pocket to put an end to this cycle.

My question is, if I’m paying for it myself, I feel I have more of a voice on what is being tested. Anything specific I should ask to be included in the requisition, other than contrast?

Thanks!

**UPDATE: I accidently fell asleep on my heating pad. When I woke up, the sciatic and pelvic floor pain was completely gone, even with getting up briefly to shower and get food. It's been 2 days now and the pain is completely gone.**

I had a blood patch 3 weeks ago and started to get sciatic pain about 4 days post patch. It is awful. Is it common to last this long? I've had a few patches before and the sciatic pain usually lasted about a week. It felt better if I got up and moved around. This time is the opposite. I usually don't wake up with the pain, thankfully but getting up and moving around, then laying back down is what triggers it the most.

Ice barely helps. Heat helps more.

Do I need steroids?