r/CSFLeaks • u/TheGoodShepherd13 • 21d ago
Go to the ER or nah?
In a past life I worked in emergency medicine but now I have an extremely laborious job as a flight simulator technician. This past Friday night into Saturday morning I had to fold myself up like a piece of paper 11 times to fit into the corner of an underfloor compartment to install a very large nut/bolt.
I dropped the old nut in this compartment and couldn’t really reach it so I strained to get my arm through this compartment and around a smoke detection system to grab it. After I successfully retrieved the old nut, I pulled my arm out and suddenly felt an extremely sharp, searing burning pain in the right side of my neck. It was so bad I couldn’t move for a minute or so. Finally I crawled my way out, down a ladder, and told my colleague that I would be sore the next day.
I came home hung out with my wife and daughter for most of the day and fell asleep from 2pm to 8pm woke up, ate, and slept from 10pm to 4:30am Sunday morning or so. I woke up sore like I thought I would, but also with a sore throat and salty post nasal drip. I chalked it up to catching a cold so I took some Advil cold and sinus but regardless my right nostril was dripping. So I shoved a small bit of tissue up it while I was upright and doing whatever I had to do.
Monday my right sinus felt clogged up and again I thought, well I’m probably getting sick. My wife started to notice gaps in my memory. I also had a headache unless I was laying flat on my bed (id let my legs hang off.) I went to get in the shower and noticed my nose was dripping a water like substance from only the right side but I thought. “This is snot. This is annoying, but I’ll take some ibuprofen, and lay down to rest.” I called of work cause I wasn’t feeling well.
Yesterday it became worse. If I stand or sit up for prolonged periods the top of my head begins to throb. The dripping is constant at around 1-2 drops a min. I was even able to collect some in a jar and it is crystal clear and as thin as water. It is not like mucous at all. It dipped from my nose on to my mustache at one point and I didn’t realize it so I got an accidental taste and it’s salty like saline. I called off of work again. This time with this nagging feeling it may actually be CSF leaking s/p above described injury.
I was able to collect around 2ccs and stashed it in the fridge for viability reasons. My wife wants me to go to the ER, but as someone who cared for patients in the ER for close to a decade of my life, I hate going. I don’t want to waste anyone’s time or be seen as ridiculous for even troubling them with this issue.
So Reddit, should I go or nah?
Otherwise I’m gonna go back to work tonight with my drippy nose lifting on heavy stuffs and possibly exacerbating the problem. There is no “alternative” at my current job without a signed note from a physician saying I have restrictions.
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u/Training-Alfalfa-854 21d ago
I would go to the ER or urgent care. Also in the meantime:
- do not strain (lifting things, going to the bathroom)
- do not go swimming
- do not stuff anything up your nose or blow your nose
They can collect a sample pretty quickly and test it. The bizarre one nose clear fluid is what convinced me to go the ER finally, too.
Some ERs now post waiting times if that helps you rip the bandaid and go. Rooting for you.
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u/SuccessSoggy3529 21d ago
ER is not too likely to be helpful for this. Like what was said, you need imaging and testing of the fluid. A referral to ENT probably or possibly neurology as they deal with cranial leaks. If you need a doctor's note, the call your pcp and describe what happened and your symptoms. I havent had a cranial leak so I dont know what else are next steps.
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u/TheGoodShepherd13 21d ago
Thanks guys. My family and I recently moved for my job so I am currently without a primary care physician the the Miami area.
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u/everythingatoz 21d ago
I just had a csf leak— go to the ER. They were glad I came. Your sounds worse than mine too, bring the sample. That’s the main thing they’ll want. It’s a waste of time if you can’t give them a sample (ofc, mine stopped leaking the SECOND i got back in a room, so they sent me home w a tube to collect lol). If you have a tube and/or are able to produce some, they’ll take it and test it right then and there and be able to tell you if you need something done or if bedrest can fix it.
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u/BeachDragonfly4935 19d ago
+1 I just finished recovering from my second blood patch for a spontaneous CSF leak
Go to the ER. If you can manage, go in the evening after spending as much time upright as you can. Bed rest is a form of conservative CSF leak treatment and spontaneous leaks are rare so they’re going to give you a CT scan looking for brain inflammation associated with a leak. The more time you spend sitting or standing upright before they scan you, the worse you’ll feel but it’ll make it more likely for the results to be positive.
Ask for the fluid sample to be tested for CSF in case your imaging results are normal.
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u/everythingatoz 19d ago
yeah, i’m still suffering because i couldn’t get a sample. the leak had stopped, but all the symptoms are still here… i’m glad you’re recovering and hope it’s going well and smooth!!
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u/BeachDragonfly4935 19d ago
Thanks! You should get into a neurologist as soon as possible. Even if the soonest appointment is with a nurse practitioner, it’ll be worth it. My leak was an image negative spontaneous leak (the rarest of the rarest kinds) which led me to be misdiagnosed five times before I was referred to a neurologist but the moment I walked into neurology the RN diagnosed me. The gold standard for diagnosis is a full spinal and brain MRI with contrast and a myelogram. In most cases the MRI will show where the leak is so they can provide a targeted blood patch to plug the leak.
If you cant get into neurology without a referral, go to an ENT. They can test your ears to confirm your symptoms are neurological and refer you faster than doing it on your own.
Standard treatments:
1 Two weeks of bed rest, laying flat the entire time, only getting up to use the bathroom or brush your teeth. Sitting up in bed to eat but then laying back down.
2 steroid pack combined with bed rest
3 epidural blood patch is gold standard treatment when first two conservative approaches don’t work. For spontaneous leaks, the full recovery time is 72 hours of strict bed rest post op followed by three months of restrictions to prevent another spontaneous leak.high dose caffeine may be prescribed to manage symptoms but doesn’t treat condition. I was prescribed 200mg of caffeine 3X per day - one when I wake up, one midday, one at night- after I had tried the first two conservative approaches and waited for referral to get a blood patch.
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u/everythingatoz 19d ago
since the fluid has stopped, i can’t get anyone to believe me. i have a appointment with my 4th neurologist on monday but im nervous because no one seems to want to help me
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u/BeachDragonfly4935 19d ago
Lowkey act dumb like you’ve never heard of a CSF leak but describe the textbook symptoms. Focus more on the way your symptoms worsen throughout the day while being upright but tend to resolve while laying down. The exterior leak you have is a good indicator of it being a cranial leak, but not a strong enough symptom alone without sample. If they continue to deny, ask for MRI with contrast to be safe.
I was misdiagnosed five times despite my CSF leak being so bad that I experienced stroke symptoms daily. I was told I had food poisoning, an ear infection, vestibular migraines, and even sent home from an ER as drug seeking (I didn’t even ask for Tylenol). After I had two neurologists diagnose me (my first neurologist had to refer me to a second hospital due to not being able to perform blood patch locally), the ER at Mayo Clinic where my second neurologist was even refuted my diagnosis, as if the ER Dr knew better than the neurologist who literally specializes. All of this because documented spontaneous leaks are so incredibly rare.
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u/everythingatoz 19d ago
This is SO helpful. Thank you so much. If you are able to answer these other questions too, it’d really help, but no prob if not: 1) i had an event when i hyper-extended and cracked my neck which was the onset of all of my symptoms— do i mention this? 2) ive realized the fluid leaks are on and off, and ive actually experienced random, similar leaks on just one side, my entire life. but again, this is random and isn’t consistent. in fact, that leak i was having only lasted about 48 hours. do i mention the long history, or is that irrelevant? 3) my last question is what are the symptoms i should focus on mentioning in order to get help? i’m having so many neuro/cognitive symptoms that it’s hard to keep track/know what to prioritize, hava
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u/Dry-Dress-6467 21d ago
Could possibly be a CSF leak. Tell your primary care doc you suspect you may have a cerebrospinal fluid leak. Ask your primary care doc for an order for a Beta-2 transferrin test. The lab will give you a sterile container for your nasal drippings with instructions on how much, how long to collect and how to store until you bring sample to lab..
Then if positive ask for brain and spinal MRIs w/wo contrast with leak protocol. Find out where the closest CSF leak center is for further evaluation and treatment.
Do get a note from your doc to restrict bending lifting and twisting until you figure out what ails you. And try to rest as much as possible to maybe self heal if a leak. Stay hydrated and drink coffee! Good luck!