This story might have helped my mom with her problem. We were in a wreck many years ago & she hit her face on the steering wheel. Her nose has ran constantly since then, (as well as the wanting to sleep all the time) so we will be getting her checked by a rhinologist ASAP!! THANK YOU SO MUCH!!!!
I'm so glad that this condition is finally getting the coverage in the media. I would definitely be writing formal complaint letters to the doctors who overlooked her, a box of tissues every other day, a pillow soaked, come on, how can that not tell them something is seriously wrong?!?!
Trust me, doctor's take the easy answer. For 2 years, I was this lady. After 2 years, I finally got my doctor to send me to an ENT. The fluid was tested and confirmed to be a CSF leak. I had surgery in December 2018.
@@nikki10114 Prayers to you. I have not healed completely but such a relief. No boxes of tissue everywhere in my house, no roll of paper towels in my car, tissue and napkins in pockets. I am having to retrain my brain to not automatically reach for a tissue.
That will do no good. They will say what is the "best practice" or 'standard level of care" in this situation. Since most physicians chose to ignore this problem, that is the present standard.
I had the pleasure of meeting this woman recently. I am amazed by not only this story, but her love and faithfulness to children. I appreciate our recent conversation.
@ Glenda Roberts, Hello, i am about to have this procedure, are you speaking from experience of having gone through this procedure ? are you saying this procedure is 'absolutely horrible to go through' can you elaborate a bit please?
IconicCutz even well paid doctors sometimes choose to go down easy street. Messed up thing is the test is simple and after that the patient has to be referred to someone else, usually. Shes lucky it was ultimately a simple fix. My brother had to have full blown brain surgery and tissue cut from his thigh to patch his leak.
IconicCutz, true. On the other hand you have those who want to milk you and the insurance so they do unnecessary work. Overall I have very little trust in medical professionals today. Of course not all are untrustworthy but a good percentage are.
Just diagnosed with this. Just doing a little research. The runny nose is also different because you can't stop it from running. I also have bad headaches and can hear my heart in my ear.
@@laurencewainwright Well, I haven't had the surgery, yet. I go in to get a CT scan on July 6. On July 8 I'll have a consult with my doctor, who will then set me up with a surgeon in Savannah, GA. I'm still leaking and I sleep longer at night than usual. My fluid is very clear. How are you?
Honestly! 😡 I am a Registered Nurse and I just don't understand why doctors find it SO HARD to properly diagnose what is to me so obvious and I don't even have the level of training they have!! Not trying to sing my own praises--it seems to me they just don't want to make the effort to dig deeper when the tests they've done aren't giving any answers. Thank God this does NOT apply to all doctors but it certainly applies to too many doctors. 😢
I was diagnosed with Spontaneous Cerebro-spinal Fluid Leak Syndrome in March of last year. The headaches were unbearable. I could even lift or turn my head. My leak was in the area of T-3 and T-4 so it was leaking into my body. It completely depleted and I could not produce it faster than it was leaking. Thank God I've been without symptoms for a year after having 3 blood patches, 2 general, the 3rd, site specific. Mine is caused by a connective tissue disorder.
V J you would think so! He was about 6 months post accident and 3 minths after the repaired the skull with a plate so i guess they figured it had been to long.
I had a car accident in 2015, I still have a scars on my right eyelid when I hit my head during the accident. It's been 5 years and I noticed that a water comes from my nose and I ignored until one day that fluid flowed from both sides of the nose and I was like "omg stop" because it's quite gross because even when I talk with people that water flow and it's embarrassing so I searched on Google and found out this and now I'm hmmm scared ...sorry for my English, not my first language
I was rear-ended sitting at a stoplight back in 2020 and I suffered a broken maxillary sinus and have had constant leakage from my left nostril only it is super super salty water like substance and it feels like you're drowning when it does leak down the back of your throat and I have been to the hospital the doctors and had an MRI and they said all they seen was the maxillary sinus that is broken fractured..
It is a BLESSING and a MIRACLE, when you have a chronic medical problem, to eventually find a knowledgeable, caring doctor to analyze and fix it. So many people become doctors just for the money and or status; they lack compassion and diagnostic skills. Patients just become a number and the doctors move on to the next one.
I know I have this condition but no one seems to believe me 😔 I have the same symptoms 6 months of clear fluid running out of my nose .. and going down my throat.. having mild headaches .. nausea ... blurred vision ,. Ringing in ears .. fatigue . And I’m so scared because I did a Mri test and the dr said everything was normal !! Then went to see an ent and said everything was normal as well then the neurologist which was my last hope to give me the proper diagnosis for it and he also said everything is normal but I know my body and I’m not normal at all! Even people around me and my family don’t believe what I’m saying about this csf leak !! Idk what to do .. I wanna come to dr Christie because I know she’s the only one who would help me 😔
Yes please .. how did she get diagnosed with it ? And where and did the procedure affect anything ? Like her brain or her sense of smell ? Please let me know I’m really scared 😔
The clear runny nose and headaches. The neurologists there spotted it right away. Hers was bad so she needed a shunt. It did affect taste and smell but she is fine and back working full time.
Oh wow I’m glad she ok now .. I’ve went to many doctors including neurologists , ent , eye doctors, pcp and no one diagnosed my condition . I’m so frustrated 😔 how did she developed it ?
This doctor failed to mention that people living with the rare condition called (IIH) idiopathic intracranial hypertension, like myself can develop a cerebral spinal fluid leak (CSFL)
I have had this for about a month but not as severe as this lady, doctor has told me it's likely to be an infection (without seeing me) and has given me a nasal spray which I'm unsure I should use
This happened to me after getting my first adjustments at a chiropractor. :( I told my chiropractor and she didn't know what happened. i went to the er and they didn't know what happened. i went to my Doctor and he doesn't know either. After my adjustment i felt one spot in my head get really cold then i felt it burta and suddenly i felt liquid running down the insides of my head and till this day if i strain bend over or do certain things it starts to leak in my head, down my throat out my eyes in my nose and out my ears. Then i get weak and have to lay down. life sucks for me now.
I KNEW IT! My daughter is having this problem right now and I thought it may have something to do with her cracking her neck and back all the time. Did you get it checked out and how are you doing? 😢
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.
wait could this cause damage? in the long run because i am an athlete has has repeatedly injured my nose and they told me that i had brain fluid running down my nose but did not do anything about it so either they were dumb for not explaining more about it or is it not that serious?
Mel Bjj I have a friend who had a leak from an accident. It was not discovered until he was very sick because germs passed through the Blood-brain barrier. He needed multiple brain surgeries. Please see a specialist
It was definitely caused by the accident unless she had another major surgery. Thankfully she had it coming from nose than from her low back. I've had 7 CSF fluid leaks from a myelogram test for my back. I would get instant headaches for a week. The only way to fix it from the spine is to make a blood patch.
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Currently going thru a CSF leak now.. the emergency room doctor ignored my suggestion of a CSF leak. Fast forward I went to an ENT and I told them my concern.. she took me serious. And sure enough that is what it is.. as of today 2/3/2022.. my nose has been leaking for 38 days. I cant wait until this situation gets fixed. Mine is spontaneous.
@@aspca2970 I ended up seeing a neurosurgeon that specializes in CSF leaks. He wanted to to the surgery for the shunt in my brain. But hadn't checked my pressure.. went back to my eye doctor May 10th.. he said my pressure looks good behind my eyes. Then i told him the plan for the brain don't surgery. He told me it was not necessary for my case.. which i figured. There is a medicine that helps with intercranial pressure. He told me if i take that and lose weight.. that my issue should go away. Which i am certain it will. I got it to stop once in Feb for 2 weeks. But when they went in my back with a needle it caused pressure and the leak started back. Today is June 11, 2022 and i still have my leak but no other issues associated with this. I need to start taking the meds like im supposed to and rest.
they should have mention that this is no where near the consistency of normal mucus from a runny nose ....this is like pure water pouring from your nose and down the back of your throat too .
If she was leaking that into her nose and throat then wouldn't eventually her brain run out of fluid or is the fluid constantly made to protect the brain? I'm baffled at this.
I had the same problem after rhinoplasty but i didn't pay attention! 😅 I thought it was normal. Today. Im fine i guess.. i always feeling i had interacranial pressure but i thought it was due to my crooked diaphragm where i went to fix with rhinoplasty surgery. Sometimes, rarely if get nose infection i feel the fluid running and make me have some relief 😂
If it truly is brain fluid, you would have it every day. I don't have the flowing if I'm sitting still or lying down. Mine happens when I get up and start moving around and when I bend over, it's a flood.
@@mommyoh5681 I swear I wasn't trying to be rude. I've just never heard of your situation. Have you had the test? Why won't they perform surgery. This can be dangerous.
These doctors are awful and there's no excuse. No one's "runny nose" should SOAK their pillow. CSF rhinorrhea could cause a brain infection, which could be fatal.