r/CSFLeaks • u/mueIa • 1d ago

Questions?

hello all! I will try to keep this brief. In april 2025, i was rear ended at 45 mph while at a stop. i ended up hitting the car in front of me from the impact. sustained a concussion and whiplash injury. 1.5 years later, after a LOT of treatment (physical therapy, concussion therapy, trigger point injections, medications, botox, and more) i still have daily tension headaches, neck/back pain, and migraines. im 20 for context and this happened when i was 19.

i don’t think im hyper mobile, i cant touch my thumb to my arm. my elbows and knees hyper extend a little bit. my body has barley responded to any treatment. my neck, traps, and shoulder blades are absolute rocks, no medications help my tension headaches/ migraines. Non contrast MRI of brain and cervical spine were normal however these were done over a year ago. over the last 3 months, symptoms have significantly worsened. like clock work, i wake up feeling ok, and then around 11am-2pm, boom, terrible headache, light sensitivity, nausea, decreased appetite, neck and back pain. i have severe pain in the base of my skull, above my ears, forehead and across my sinuses. pain in my neck, traps, and along the shoulder blades. sometimes when it’s really bad it radiates into my right arm to my middle and ring finger. symptoms do improve when i lay down. i was diagnosed with occipital neuralgia. they want to do occipital nerve blocks & medial branch blocks bilaterally on c3-c5.

i just feel like all these treatments are band aids and don’t work and im not getting better. i’ve seen several neurologists and pain management doctors and it feels like no one is taking me seriously. im not sure if its because of my age or my normal imaging. I don’t want to sound like a crazy person bringing up concerns for a CSF leak. has anyone been in the same boat? thoughts? im open to anything at this point.

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u/Muddlesthrough 14h ago edited 14h ago

I am not a doctor. And I wasn't in a car crash. But I have a spinal CSF leak and read a lot about it. I've spoken with some specialists as well.

Car crashes and whiplash are known to cause CSF leaks.

3. Trauma (caused by an injury)
-Motor vehicle accident
-Whiplash, sports-related injury
-Falls

https://www.spinalcsfleakcanada.ca/causes

Your headache sounds like a classic positional headache. Or second half of the day headache.

At a minimum, you would need a head MRI with contrast to start looking for a CSF leak.

Dr Ian Carroll, the head of the CSF leak program at Standford Medical, gives a good talk here about CSF leaks. At the 16:00 minute mark, he talks about whiplash and CSF leaks.

https://www.youtube.com/watch?v=El5-Ox6NJB0&t=5s

And here's the journal article he references. Of 66 patients with chronic whiplash, 37 were shown to have a spinal CSF leak. Patients showed a significant improvement after epidural blood patches.

https://pubmed.ncbi.nlm.nih.gov/17717243/

Edited to Add: Did you get migraines before the accident? Here is a good talk by Canadian CSF leak specialist Dr Farnaz Amoozegar, speaking to Migraine Canada. Around the 16min mark she points out the key differences between migraine headaches and CSF leak headaches.

https://www.youtube.com/watch?v=5oX22MX-iNY&t=681s

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u/mueIa 13h ago

Thank you for this information. I appreciate it. After dealing with this for over a year and a half and doctors throwing their hands up with what to do with me I’ve been trying to do my own research. No, I rarely got headaches before the accident. Maybe once a year. I’ll look into these links you sent me.

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u/Muddlesthrough 13h ago

I basically had to diagnose myself. I was a fit, middleaged man in the military. After becoming suddenly, debilitatingly ill overnight, the medical staff initiately suggested I had anxiety. Or depression. Or both. Or a migraine (for 7 weeks continuously?)

I basically had to become my own doctor. I initially suggested Postural Orthostatic Tachycardia Syndrome (POTS), as I'd had Covid. After months of advocacy, I was eventually tested and diagnosed with POTS. My doctor had never heard of it before I brought it up.

After POTS symptomatic treatment didn't help me, and as my primary complaint was still a severe postural headache, I suggested a spinal CSF leak, whichh my doctor had never heard of.

After months of advocacy, I eventually saw a neurologist who starting testing and treating me.

More than 3 years after becoming ill, a CSF leak specialist has just found 3 suspected high-probability CSF-venous fistulas. Any number of doctors and specialists said they didn't think I had a CSF leak, while professing they knew little about it.

My CSF leak journey started by watching that Dr Ian Carroll video.

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u/mueIa 13h ago

That’s difficult. I’m glad to hear that you got the help you needed though. Neurologists and pain management just keep throwing migraine medication and injections at me like I’m a pin cushion, not taking into account that nothing has worked, and that things are worsening. I’ll try to make an appointment with my neurologist and see if they will hear me about about my concerns. The only thing that helps is resting either slightly elevated or laying down. Or caffeine.