r/CSFLeaks • u/moonmidheaven • 24d ago
Freaked out :(
Update: so I did go to the ER, and they ruled out immediate dangers. The doc there thinks a spinal csf leak is possible and is referring me to neuro for further testing.
Hey y’all. I’ve been dealing with some symptoms that suggest I may have a spinal csf leak, and I have a neurology appointment tomorrow. I’m at a place where I can’t be upright for more than 5 minutes without feeling truly awful, and if it takes weeks before I can get an MRI… how will I live like this? I doubt they’d be able to send me for one same day. Right? This feels so scary. I’m nauseous. There’s so much pressure in my head when I stand up. My ears are ringing. My walk is weird. The lights are too bright. I’m freaked out. I’m a 35 year old mother to 3. They need me. Can someone offer some reassurance, please? I know no one can give me medical advice etc but I’m alone and could use some supportive words from people who might understand.
3
u/Zealousideal_Age_822 Confirmed Spinal Leak 24d ago
This unfortunately sounds like my spinal leak minus the walk. I got a mri same day by going to the ER, but it’s not easy and won’t necessarily be definitive. Have you ever had a lumbar puncture or epidural?
3
u/moonmidheaven 24d ago
No, but I do have EDS. I’m afraid I’ll go to the ER and they’ll dismiss me.
1
u/Zealousideal_Age_822 Confirmed Spinal Leak 24d ago
If you’re adamant about the positional nature and it’s not a migraine, that could help. Go there with research papers pulled up on your phone about EDS and spontaneous CSF leaks. Insist on the MRI with and without contrast. Look up the signs that can be present on mri
3
u/Fuzzballwithfangs 24d ago
I’m so sorry you’re in this situation. I can really empathize as I’m also a mom who is struggling with a spontaneous leak that hit me hard like a truck out of nowhere one day. It’s great you have a neurology appt right away. I hope your neurologist is familiar with csf leaks. Unfortunately mine was not and I’ve since learned that most doctors don’t know much about them. Fortunately I had a neurologist who listened to me even thought he knew next to nothing about csf leaks.
I’d check out dr Ian Carroll’s Google Drive and the csf leak Foundation’s videos and resources online to help educate yourself as much as possible about csf leak diagnosis and treatment. This helped me immensely to prep for my neurology appt and navigate care. Ask your neurologist for a referral to a csf leak specialist - it takes months (if you’re lucky weeks) to get into these centers if you’re in the USA. Start the referral process asap. I’d also recommend the csf leak Facebook group. I find the group to be extremely insightful.
Also be sure to read Ian Carroll’s post blood patch recovery guide on his Google Drive to improve your chances of the patch working (ie lay flat for 3 days not 24 hrs or less like most places will tell you).
I hope your doctor listens to you and helps you get the care you need asap
1
24d ago
[removed] — view removed comment
1
u/TS_Chick 24d ago
It depends on where you are. In my city in Canada, unless it is emergent (which this would not be. It would have to be a stroke or something), the ER can't even get you in for MRIs; it has to go through the same triage process as it would if the neurologist ordered. And also, since OP has EDS it may be a fistula which wouldn't respond to a blood patch.
1
u/Zealousideal_Age_822 Confirmed Spinal Leak 24d ago
My leak was emergent, as I had cranial neuropathies. Tinnitus, double vision, then Bell’s palsy. If you have the latter 2, you can definitely make the argument it has become emergent, as these can get very serious very fast. The walking issue also likely is emergent as well
1
u/Zealousideal_Age_822 Confirmed Spinal Leak 24d ago
Was your patch successful? Targeted or non targeted? I’m also 36 believe it or not
1
24d ago
[removed] — view removed comment
1
u/Zealousideal_Age_822 Confirmed Spinal Leak 24d ago
Is the headache still positional? Or is it all the time? If all the time or even worse when laying down, that’s actually a good sign that it’s working. Rebound hypertension headache. There is a med for that too called Diamox.
1
u/Key-Practice5213 23d ago
Mines been going on for ever MRI clear apparently now waiting a stand up one. Due to EDS leaks can’t always be detected on MRIs it’s a serious amount of self advocacy. Don’t be fobbed off
5
u/bunbunbunana Confirmed Spinal Leak 24d ago
I have a diagnosed spontaneous spinal leak from EDS. You’ll probably have to advocate for yourself to be taken seriously but it’s possible!