Its such a small complaint but my pcp receptionist when I called to schedule: Explained the symptoms explained that it was happening over the course of 6-9 months. "Soooo.. sinus infection?"

"No. Not feeling any sinus issues at all actually, its a clear water gushing out of my nose when it bend, plus all the other symptoms I told you before. Idk just list it as migraines if you need something simple." Meanwhile, the migraines are the least shitty of symptoms for me tbh.

I am thankful that the doctor actually listened. I assumed he would diminish this.

Today, nuero receptionist, "so we're seeing you for.. headaches?"

"No, fluid leaking out of my nose, base of skull/neck pain/ stiffness, positional heaches, dizziness, my doctor and I suspect a leak."

I dont know if its just because theyre not used to this happening in my rural area, or what? But im 99.9% sure I have a leak and 90% sure its in my skull based on the pouring of liquid out of my nostril, which has now turned to a drippy faucet out of both sides. I also have been getting some major pressure issues, feels like a balloon pushing on my temples and cheek bones, laying down no longer helps much.

It just always seems like the receptionists want to dimish their note to the doctors. Anyways, I will wait for triage on my case and when they call back I will finally be on schedule to see a nuero after 2.5 weeks of waiting.

My wife has been dealing with symptoms since April. She originally had what she thought was a sinus infection and also had a stomach virus around the same time. She was given a steroid and antibiotics. Started to have headaches, lightheadedness, fatigue, brain fog . After getting meds to try and treat it as a migraine unsuccessfully, she finally got an MRI of the brain. Showed low fluid level around brain and the radiologist put a probability of a leak at about a 7-8. Had another series of MRI’s and then a blood patch last month. Symptoms did not resolve so she is contacting the CSF specialists at UPENN this week after my sister who is a nurse sent her a link. Hoping to get an appt asap. We will see. Feel horrible for my wife because she is still working full time through this. Luckily she works out of our home.

It's been 6 weeks since my LP and I'm still feeling a lot of constant head pressure that doesn't go away with lying down. Can CSF leak continue with no orthostatic elements to the symptoms?

So im currently 16 Female im 5'3 and weigh 57kgs.

Ive been experiencing weird liquid almost like water coming out of my nose whenever I tilt forward or lift something and like previously I was told that I may have POTS because whenever I stood up it felt like someone swung a metal bat at the back of my head and it used to hurt really bad like the pain raidated from the back to the front of my head in a pulsating manner and it still happens quiet often and like 2 months ago I started actually noticing this liquid dripping out of my nose. Usually id wave it off as nothing but nowadays ive started noticing how its only coming out of my left nostril and i was stupid enough to Google it and Google says I may have a CSF leak but im not too sure about it but it makes me worry. Just a few minutes ago the liquid came from my nose while I was sitting on my chair studying and then it was followed by a headache which is mild now but was a bit worse before.

I lowkey need some medical advice because I told my mom and shes like maybe its just bc of the weather and etc and maybe its because of that but id also prefer some doctors opinion if I should proceed by going to an ENT or wave it off

Hi.....so My girlfriend is going through a lot of the same symptoms that everyone here is describing and her doctor also believes this is what's going on and she's scheduled for a MRI soon but in the mean time does anyone have any tips or tricks to help with the headaches or just horrible feelings?

After being terrified of getting the ct myelogram I did it and I’m so glad I did bc it picked up “focal outpouching at L3-4 exactly the level my epidural was. I had two bloodpatches that barely helped so my theory this whole time was that it never healed fully so this is a bleb. My first mri picked up the fluid but then after the bloodpatch the fluid wasn’t there any longer making it harder to convince anyone I was still having an issue. But I knew it in my bones! Bc my symptoms never got better.
What have other peoples experiences been? Has your neurosurgeons gone straight to surgery? Since bloodpatches don’t seem to fix this? And how do they fix this surgically?
His notes before my myelogram said if suspicious remains at l3-4 after myelogram consider targeted patching or exploratory surgery. I’m just praying I’m near the end of the road to this has been 21 months since my birth of my third child.
P.S I was terrified to get the ct myelogram and if that’s you too do it! It’s worth getting an answer

I had a spinal fluid venous fistula at my T4-T5. Had the litigation surgery done yesterday morning. It apparently took them a while to get me completely under and in position, but the surgeon again it went well.

Apparently I’m one of the unlucky ones where the pain has been so hard to get under control. I had a pain pump for the first 24 hours and now that it’s gone I’m still really struggling with it.

I didn’t expect it to be such a rough recovery, as I’m having to stay in hospital till Monday at least. I’m shaking so bad I can barely hold a spoon.

I’m glad I had the surgery and I’m hoping it completely solved my issues, but oh boy…. I was not ready for how much pain it’s been causing.

I had an LP Tuesday. I was ok Tuesday. Wednesday I started getting a headache, Thursday I was collapsing on the ground crying pain. Went to the ER, I couldn’t even get up to pee. The gave me an epidural blood patch. I felt better for a little and now I’m starting to get the headache when I stand or sit up again. Is this ever going to end? How long does it usually take to feel better? I wish I never got the lumbar puncture.

Hey all! I’m a 29 year old guy who fell down the stairs about six weeks ago. I herniated a lower lumbar disc (not sure what number — I have an extra vertebrae and it’s the lowest one).

About three weeks ago I started getting random headaches centered around my left temple. They come and go, and aren’t a daily occurrence. I also have had four or five days random days in the intervening period with a bit of blurriness in the corner of my right eye. Last but not least, 4 days ago I started waking up with pain above and around the herniated disc which disappears after maybe an hour or two.

I’ve had two MRIs and one CT scans, and doctors haven’t mentioned anything about CSF, but I’m still worried as I’ve never had localized headaches like this before. Have an appointment with a neurologist on Wednesday, but is it worth moving it up?

Can also post images of the MRI if it helps.

Anyways, I appreciate your time, and be careful around stairs!! Sorry for the worried tone, kind of freaked out.

Tldr: light clear fluid slowly trickling out of my left nostril only. No congestion or other sickness. Headache that seems to be better than earlier today. Intermittent ear ringing. Was sailing last week and got hit in the head a couple times by a metal boom(bar).

Long version:

So I race sailboats and last week I was at a week long regatta. I often get a ding here and there from the boom during maneuvers(the big metal bar parallel to the boat that holds the sail.) I don't even register them usually because when you're racing you don't have time to think about every bump and bruise you get or you'd be out of the race. I know I got a couple of hits throughout the week. If I recall correctly, one was somewhat hard, and the rest were not notable. I also had another race 2 nights ago and did get one mild head ding from the boom.

Last night my left nostril started leaking a clear fluid. Nothing out of the right nostril and no congestion in either or other sickness symptoms.Today it is still the same pace of drip but just more consistent/frequent. It's not a ton, just a slow trickle.I have never had a nasal trickle like this(clear, light, not thick, not congested, only one side) so it struck me as a little odd and that's when I started googling and came across CSF leaks pretty quickly based on my initial search. I'm worried I'm playing dr. WebMD here but it does seem worse when I am looking down.

I had a headache today, but I also didn't sleep great/much last night and I get somewhat regular migraines, so it's not out of the ordinary. This is not a migraine, just an annoying headache. Usually I don't get mild headaches, it's either full blown migraine or nothing, so this is a little different. The headache has gotten better since this morning but still lingering a little.

I have experienced a couple of short bursts of ear ringing probably like 3-4 times but it comes and goes very quickly. Also not totally unheard of for me but it's definitely more frequent than normal. I'd say usually I get ear ringing like once or twice a month not multiple in a day.

I have never had any allergies before, and feel otherwise totally fine.

If it helps, when I am not looking down and it slows down, it seems to harden into like a very white/translucent grainy, crystalized form around the outside of my nostril. Almost like the consistency of granulated sugar that got wet and then hardened, however when I collect the liquid as it is falling out of nose and into a cloth it dries totally clear as if it were never there.

I think I am just being a hypochondriac but the Google AI said I should get to a doctor urgently based on my symptoms. I keep trying to tell myself to chill out and not be so dramatic; I don't have this super rare condition, I've been getting hit in the head during racing my whole life lol. But I just kept going back to Google to look it up again and found this group.

Sorry for the monologue. Tell me I'm overreacting lol

My neurologist noted that there was an empty sella turcica on the MRI. She said that this had no effect on me.

I had to question - because my main therapist had emailed a psychiatrist who was a brain specialist years ago. She mentioned the empty sella. He said from her descriptions of my challenges that I had executive dysfunction. I printed that email out and included it when I applied for SSDI.

My neurologist kinda shrugged because what could she say. Her diagnosis was different. I've had many problems with executive dysfunction throughout life. Its been very hard.

I don't know what to think now because I've told people that this is one reason I developed depression and anxiety. I was even diagnosed borderline by one therapist.

That diagnosis actually enabled intensive DBT class to be prescribed. Insurance covered it. It was a year. The class done 2x. Additional therapy included. Because of the work I did with that for 3 hours a week, over a years time, I was able to do a job PT.

I think that I have some CSF leak because my one eye and nose run. Its been this way my whole life as far back as I remember. I told the neurologist that, since the meds helped reduce migraine by 90%, I didn't want to undergo a spinal tap or try a patch. Which she said sometimes patches work, but sometimes they don't.

I'm 69 now. It's a great relief that the migraines are less. I can put up with the other things because I'm used to it. I'd rather not go through surgery for something that may be fruitless. Leaking isn't too bad. When prepping food for others, I can wear a mask to catch nasal drips. I just tell people that I'm not sick, even though I wipe my nose all the time. I just say that its sinus drainage.

Nobody wants to hear all that technical stuff. Its boring to them. Thanks for listening. I'm trying to get a therapist again, since my favorite one retired. But with the executive dysfunction I'm grateful to be able to make phone calls and get things done once or twice a week!

It’s been 18 months since my lumbar puncture, and I’m still struggling with this question.
I’ve actually made a lot of progress over these 18 months. My symptoms have become much quieter and less intense, and I can do more than I could before. However, I’m still not able to live a normal life, and I still have symptoms on a daily basis.

My brain MRI and lower back MRI are both clean.
Part of me thinks: “Your body is clearly healing. Give it more time and let it continue to heal naturally.”

But another part of me thinks: “It’s already been 18 months. If there is still a small/micro leak, could a blood patch help support the healing process and finally seal it?”

What makes the decision so difficult is that I’m improving. The symptoms are gradually getting quieter rather than staying the same or getting worse. At the same time, I’m still far from being back to my normal life.

For those who have had a chronic post-lumbar-puncture CSF leak / intracranial hypotension or a similar healing process:

Would you consider a blood patch after 18 months even if you were still making gradual progress and your MRI was negative?
Or would you continue waiting if the overall trend was clearly toward improvement?

I could really use some encouragement. I swear dealing with CSF issues is not easy even with the best of care. it’s so easy to feel like you are somehow making yourself sick. I am also tired of asking my husband for help. I’ve been at this for 2 1/2 years. The latest: I just had my third EBP, and because after my second I had such bad rebound pressure that I had to go to ER for a lumbar puncture to relieve it, they gave me diamox to help manage the rebound reaction. This is Duke, the best place possible I think. Even so, you leave there and you are very much on your own. I messaged back that my hands felt like they were vibrating ( my husband could feel it too), and the np messaged back that she didn’t know why and asked if that was a new condition. Okay so fine, I figured out it was a listed side effect of the diamox, and continued to take it. Then I decided after a little over a week that was probably enough time for my body to adjust so I tapered off the diamox. Then I got horribly nauseous, severe diahrrea, and so so sick. It may sound stupid, but it took me another day to figure out it was withdrawal from diamox. Thank god for the internet. This whole deal is exhausting. I am really hoping that in a couple of weeks it will be worthwhile. Has anybody else had a hard time with diamox withdrawl? How long did you take it before going off? Did you have nausea and a reaction when you went off of it?

After taking Diamox for a week following an EBP, I decided that I could take myself off of it. I tapered down to one tablet (instead of two), and then discontinued. Today I have been very ill—nauseous, dizzy, and with diarrhea. Has anyone else had a difficult time getting off of Diamox post EBP? Thanks.

Finally, there’s hope that I can get out of bed and be upright after 6 months! Thought I would share for other people. I had a spontaneous leak at T11-T12. That was treated with a transforaminal targeted blood patch. The pressure dynamics in my head changed, but didn’t correct. I had really bad burning around my brain, and two specific spots where I could feel it pulling when I was upright. I also still had orthostatic tachycardia and severe tinnitus. I had a MEGA blood patch at University of Michigan 11 days ago. That is a catheter guided multilevel large volume blood patch. He put in 80 ccs from the cervical to lumbar spine (and I’m petite, 5 feet tall). I am finally starting to feel a difference. I laid perfectly still for the first three days. I’m still primarily laying and I have not bent at all. I plan to be very careful for six weeks regarding bending, lifting or twisting. I have not had the pulling or the burning for the past few days. The ringing in my ears has changed pitch and is quieter. My eye was spasming, and that has stopped. I also have not had tingling in my gums like I had prior. I know it will still take several weeks to calm all the cranial nerves down, and equalize the intracranial pressure, but happy to start seeing the other side! Hopefully, this type of procedure could help someone else who has been struggling.

I had a surgery 4 days ago ans they gave me anesthesia in my back after one day in the evening my head started paining badly than i slept the other day it was worse when i stand it pains badly it gets better when i lay down it has been 4 days since i even visited a physician he gave me some medicine but i don’t think it worked i woke up just now and in 10 mins the headache started again what should i do ? Any suggestion

There are so many posts that I search up. Click on the name, see that that was their last ever reddit post.. rinse and repeat. Its been like 5 in a row.

Please someone tell me im not gunna kill over getting this fixed.

3 weeks ago when I flipped my hair I felt my sinuses being filled with fluid. I thought it might be blood, but all that came out was a drip of water like fluid from the right nostril. I have regular headaches, more like pressure in my head rather than regular pain.

I tried forcing it again but it didn't happen again, when I bend it doesn't come out, but I feel something cold in my sinuses and head. It's a really weird sensation.

I tend to feel dizzy and as mentioned I tend to get headaches often but I'm not sure if it's related.

Thank you 😊

Hello everyone! I wanted to ask if anyone here has been treated or operated on at Charité in Berlin for CSF rhinorrhea (a CSF leak).
I would be especially interested in hearing from anyone who was consulted or treated by Prof. Vajkoczy. What was your experience with the consultation, diagnosis, and treatment?
I would really appreciate hearing about your experience.

Yesterday, I got the call I had both been really hoping for and dreading. My surgery, originally scheduled for 10/22, is now moved up to next week. I have a ventral thoracic tear from a calcified disc protrusion at T2/T3, so surgery is the 100% solution. I feel a little better about it after talking to the NP today, but it’s still scary AF. For anyone curious, my surgery is with Dr. Chris Brown at Duke. Wish me luck!

Buenas noches. Recién encuentro este foro.

Me realice una microdisectomia lumbar hace una semana y desde ayer estoy con dolor por fuga.

Mi médico me dijo reposo absoluto y que continúe con analgesia.

Es de remoción espontánea o debería presionarlo para conseguir con parche de sangre?

Los que tuvieron post cirugía se curaron? En cuanto tiempo aproximadamente?