Brain Fluid Leak? Answering Your Questions about CSF Leak

[leslielandberg]

One of the most serious and commonly missed by doctors. They tell patients it is rare so go home.

[dreitv]

been experiencing it for the past 2 months. had the same symptoms above, had headaches that made me wanna throw up, had clear liquid but sticky drips, had traumatic event. thinking it was allergy i stopped eating spicy foods, minimized my exposure to disinfectant chemicals, dust and smoke. I tried to calm myself because I was so stressed in the past few months i heard that stress makes your immune system weak i stopped watching news and started watching kdramas.. but now im surprised it stopped. it just stopped.

[glorishamohan]

My dripping was for 3 mths. I was hospitalised initially for influenza after 2 days doc said pneumonia. But got discharged. My dripping was bad at certain places. Mentioned to doc abt leaking and he just said inflammation of the sinus. On 21 dec 2023, had headache, pain at the back of the neck, vomiting and couldn’t see bright light. Was brought to hospital by ambulance. Then was diagnosed with bacterial meningitis. This time doc took mri and found the bone missing bed confirmed that it was csf leak. Was asked to do an operation on 4 Jan 2024. I turned down the operation asking for some time to consider. But on 10 Jan 2024 till now leaking disappeared. Don’t know how but taking it as a miracle from God!

[joella]

I have had 2 surgeries for a CSF leak that occurred following a motor vehicle accident. I primary care Humana physician did not chart my symptoms for 2 years. He said unilateral fluid leaking from my nostril was allergies. Finally, he gave me a referral to and EMT. My right nostril was running fluid like a faucet. No joke. The first ENT I saw stated that he had never seen a patient leak so much fluid. It leaked sitting upright but he had me to bind over. I was so embarrassed as I left a puddle on the floor. He sent some of the fluid for testing to confirm it was spinal fluid. It was. MRI showed fluid in my brain where it was not suppose to be. Scheduled for Endoscopic CSF Repair. The headache after this surgery was horrific. Sent home with very limited activity. Before I went to my follow-up appointment, my nostril was still leaking but a little less. So again, fluid was tested to confirm it was spinal fluid. It was. This ENT apologized but wanted to call it a re-leak. Sorry, my nostril never stopped leaking. It gets worse. About 8 weeks postop, my left nostril began to leak. ENT refers me to another ENT out at the University of South Florida. Scheduled for second surgery in March 2020. This time, a neurosurgeon placed a catheter/drain in my back so that dye could be injected and the location of the leak would be found and plugged with abdominal fat. He may have used something else but he stressed the abdominal fat. Spent 3 days in Neuro ICU. My major complaint post-op and now is right maxillary sinus pain, numbness of my teeth, cheek, half of my nose, half of my tongue, and half of my lips. I asked a Resident why was my face numb on one side. He said, "We were near your nerve, we saw the nerve but we didn't touch the nerve. When I spoke with my ENT, he said the leak was under the nerve and we moved it. Ninety-five percent of the time the nerve issue would resolve but 5% of the time it remains numb. What nerve? I do not know as he will not say. I was discharged. I hope my nerve comes back. It is horrible to feel like you are drooling when you are not. Half of you lip feels like it is swollen as if you have been hit in the mouth. I have to eat lukewarm food as half of my mouth is numb and I have burned the left side of my mouth with food. I feel like I am choking on mucus if I talk for any length of time. I can only eat soft foods. I had a salad and felt as some lettuce was caught in the mucus and began coughing until I got it to move. I have so many question that no one wants to answer.

[abigaila]

I haven’t been diagnosed yet but I truly feel this is what i have. After taking antibiotics Bactrim for a UTI, my head pressure started and the pressure went to my upper back too and forehead. Going to a neurologist soon I need to get this fixed it’s making my life miserable.

[mattscott]

I had a meningioma removed a year ago. Also had radiation since it was Grade 2 A-typical. So I went to Disney world a couple of weeks ago and went on a ride I probably shouldn’t have, too many spins and bright lights. Well, when i got off the ride, I experienced clear thin fluid dripping out of my left nostril. I suspected CSF leak. It resolved quickly after a few minutes. Then just yesterday I had a similar episode. I seem to get light headed after, not sure if it’s my mind freaking me out or what.

[DEEDEEEason]

I'm nearing 5 years. The worst was having a doctor tell me that maybe my fluid in my one ear (for years) was leftover shower water... mind you, I don't take showers only at night and sometimes it's a bath, but that's neither here nor there. This is oily, associated with chronic head and ear pain. Yeah...water that drained out and didn't dry up overnight. How insulting.

[Bezzy]

I have this clear leak when I bend forward

[abusami]

Dr loung hi I had been suffering from csf leak for a long period of time since I was 17 years old I am now 43 I always consider it a rhinitis or common cold till recently I had a severe headache nausea and went did CT scan found out I had pns but after talking to my doctor about the symptoms he told we need to rule out csf leak going back to my history with migraine and the severe headache i was having that will subside when I'm laying down no surgeries no treatments only God bless so my question is have you ever had a case where the patient misdiagnosed for a long period of time and survived it.
I have been a pro volleyball player lefting weights never thought I was in life threatening situation used to relief the headache or sleep it over till next day feeling 💯% and go deal with my day as normal person. Hearing about it now and how serious it is still be in denial so got any advice for me

[tobiaslerone]

I believe I may have this condition but when I mentioned it to my consulting doctor he scoffed at me and asked whether or not I had looked at the internet. He told me that he thought I was over exaggerating with my symptoms and that CSF is very rare and therefore highly unlikely. Is it me or is it rarely diagnosed as to being a rare condition... I'm inbetween jobs and suffer from pressure above my head area like someone's sitting on my brain, dizziness, tinnitus, fatigue. I am at whitts end and if it continues I feel like I may do something I'll regret. I used to go to the gym every second day when I starting getting clear discharge from my nose, now I spend alot of the time laying flat on my back. It's ruining my life and Im in my 20's.

[KristinaMarie]

How do I find a physician to treat you for a possible CSF.
I had a known CSF in 2010 and had a blood patch and another CSF in 2018 immediately after having my second lumbar spine surgery that warranted a second emergency surgery the next day to close a large leak. Since have been experiencing all the classic symptoms that a CSF can cause since 2017-2018 that I believe started sometime after my cervical spine surgery or the lumbar surgery. I have had three lumbar spine surgeries and the one cervical and honestly since 2018 I began having the headaches first than the other symptoms started causing doctors in all other specialties diagnosing each symptom separately but no one expects a CSF I don’t know how to explain to my doctors to where I am taken seriously. I even have spinal fluid sitting in my lumbar region since 2018 but that hasn’t warranted any concerns from my doctor.

[jadelee]

I don't understand what the point of a lumbar tap for this condition is when there's already fluid leaking out from the nasal source.
How can we treat the CAUSE rather than just treating the problem by slapping a patch on it and draining the fluid through another hole?
So how do we address the increased cranial pressure?

[whoareyouwhenimnotlooking]

Whip lash cyct in center of spinal cord c6- c7 the symptoms are much worse than it use to be from 20 years ago it still showed up on catscan

[animallover]

I have this and still no help and all i get is allegeries from doctors and depression and anxiety so close to death but yet it never comes it feels like i am dead. I have evidence of a leak on my channel.

[andrewlovato]

Hello, my name is Andrew. I'm a 19 year old college student. I have been battling daily headaches and muscle tension in my upper back/shoulders/traps/neck for over a year. I'm doing atlas orthogonal treatment right now. I have gotten maybe 4 adjustments and I haven't gotten any relief. Also I'm looking into the CSF Leak Treatment. If anyone has any ideas or input please let me know. Thank you so much.

[charlie_x]

After a few days of my nasal covid-19 swab test,
I started seeing "yellowish" liquid running out of my "left nose.

I have heard many cases around here, people having leaks after their covid tests. I am now concerned for my health, if I should see a doctor or let it heal on its own, if it does hopefully.

[nouvelleriche]

Please cover the possibility of EDS in spontaneous cranial leak patients.

[sheilabrown]

I had an accident in 2001.
Prolonged whiplash for 17 years.

Had a deep tissue massage and the next day, I had HORRIBLE symptoms including dizziness, left sided pressure in head, pain in back of head, nausea, vision issues, sore throat on left, ear pressure pain on left, post nasal drip on left. The drip does not come out of my nose, just down my throat, heartbeat down spine, muscles are so tight in neck, left shoulder.

Drs don’t know what’s wrong. MRI is good.

Wonder if this could be it?

[joella]

I do not live in your area but I have a question. What are the long-term issues following a CSF repair? Can I travel by airplane? Must all activities that may cause additional pressure on this area be discontinued? Or will a person be able to do as they please several months after the final post-op surgery? Thank you.

[MuhammadWaqas-tonu]

Hi, I am from Italy, actually when I am at home or work mean inside door I am ok but when I go outside even in summer I have runny nose problem but I feel better in summer as compare to winter, its like fluid