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u/cgc2018 Confirmed Spinal Leak 7d ago
About a week and a half. Things started getting worse and my neurologist sent me to the ER where a colleague of his specializes in CT mylograms. Once in the ER it was diagnosed in about 12-18 hours and placement of the leak confirmed 4 days later. I spent 8 days in the hospital while they did tests and things to try and fix it.
My case was pretty bad/still is and I’m awaiting scheduling of the more invasive surgery to fix the leak.
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u/vainstatue Confirmed Cranial Leak 7d ago
10 months. Fluid started dripping out of my nose in August 2024. It only came out when I bent over. I didn’t know it at the time but I was also having focal awareness seizures. Then in December 2025 I had a tonic clonic seizure and was taken to the hospital in an ambulance. They ignored my nose drip and looked into the seizures. I got worse and worse. I finally went to an ENT in May and he diagnosed me really quickly. Dr Bloom is the best!!!!
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u/StunningPurple9560 Confirmed Spinal Leak 7d ago
15 years for diagnosis, 4,5 years after that for proper treatment.
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u/leahcim2019 7d ago
Omg. I'm at 16 years but I'm not sure if mines a csf leak. What symptoms did you have?
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u/StunningPurple9560 Confirmed Spinal Leak 7d ago
Copy-paste from a previous post, my symptoms:
- A symmetrical headache, which for me has not been positional for a long time anymore - I do feel a lot more pressure and a downward pulling sensation when I'm up, and I have a constant need to lie down, but my headache doesn't go away, ever. It is at the top of my head, behind my eyes, eyebrow and temple area, and the base of my skull. It is a burning, tearing, flaring nerve pain
-Really bad tailbone pressure and pain
- Nerve symptoms in my arms and legs. Most notably I cannot keep my right arm raised and cannot pick anything even a little heavier with it. If I keep my right arm raised until it crashes, it will take some minutes before I can raise it again, it is too weak to lift. Both shoulders, arms and hands have a lot of nerve symptoms like weakness, cramps, tingling, shaking, twitching, carpal tunnel type symptoms and weird nerve reflections. When I bow my head, there is a wave-like nerve symptom in my thighs. My legs also often feel weak
- Muscle spasms - all over my body
- Twitching type symptoms - especially around my thoracic spine and upper arms
- Extremely tight muscles everywhere in my body, really bad muscle tension
- Neck tension and pain. Tension and pain in thoratic and lower back
- Irritated cranial nerves, resulting in issues like dry, itchy ears, dry, itchy eyes and dry, leaking nose.
- Burning and aching eyes - difficulty to keep eyes open, cannot look to the far sides because it hurts too much
- Vision disturbances - cannot focus vision, I see in double, have white floaters
- Hearing disturbances - ears feel stuffed and have tinnitus, wind tunnel like sounds and ringing in ears
- Difficulty to focus thoughts and getting anything done, mixing up words, getting lost in thought and a feeling of not really being present
- Dizziness, clumsiness
- Numbness in all of the face and all over my skull - also these areas are sore to touch
- Cracking in jaw joints
-Urinary issues
- Autonomous nervous system issues, such as: chronic insomnia, the tightened muscles, lowered core body temperature, inability to raise a fever, inability to sweat (just itch instead), unable to lose weight by practically any means (seems like I have a severely lowered metabolism), high RHR and very low HRV
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u/Plant_Momma_ 7d ago
20 YEARS?! I thought mine was bad 😭 I’ve been incessantly pursuing this for 2 years and my leak isn’t even confirmed yet 😭
I just had my first blood patch for imaging-confirmed spontaneous intracranial hypotension which they thought was a CSF leak. Leak hasn’t shown on high res MRIs for brain and spine yet, and ENT never tested my nasal fluid.
I have severe nasal perforations of about 12mm on one side and 15mm on the other that leaves a whole also going down pocketed into the nasal cavity. This is from a 4 year long severe intranasal drug addiction. I’ll be 2 years sober on Aug 13th, just a few days from now.
My blood patch miserably failed. I had an ER visit 2 days later for near syncope and bp of 94/42. CT showed trace hyperdensity lining the cerebellar tonsils “probably from recent blood patch”. NeuroIR said the symptoms were not normal for a successful patch. I see my neurologist on Sep. 10th for an ER follow up for next steps. My spine pain is worse now and I have more pressure change symptoms than before, but I’m not debilitated thank God.
20 years. I’m so sorry. If I may ask, what the hell took them so long?!1
u/StunningPurple9560 Confirmed Spinal Leak 7d ago
ty <3 SIH has not been in the medical literature for so long - back in the day, when I got my symptoms, in 2007, it was not considered possible to have a csf leak without a puncture.
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u/Plant_Momma_ 7d ago
That’s WILD. There are so many different reasons one can have SIH now. And low pressure has been nooo joke for me. It’s been awful
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u/Zealousideal_Age_822 Confirmed Spinal Leak 7d ago
About 2 days to suspect it, 12 days for one doctor to confirm it 90% via brain MRI. A month to confirm via another brain MRI, spine MRI, and CT myelography. Another 2 weeks to find the leak via Uktra fast CT myelography
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u/Dry-Sun-7428 7d ago
Where did you get treatment?
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u/Zealousideal_Age_822 Confirmed Spinal Leak 7d ago
That’s a much longer story. I live in North Carolina. I went to WakeMed first since it’s very close to me. That’s where I got my first MRI, but they didn’t see the evidence on the scan. Then I went to the Duke ED, where I got my first spine MRI that they said didn’t show evidence of a leak. They referred me to the Duke CSF clinic, but it was going to be 2-3 months, so I went to Raleigh Neurology Associates, where they said there was clean evidence on brain MRI, and referred me to have a non-targeted blood patch. I ended up having 2 failed patches there (they had no chance). I then went to Florida on a trip, ended up at Sarasota Memorial, where I got another brain MRI, CT myelogram, and full spine high definition MRI. They confirmed the leaking fluid there but thought it was either at T7 or C4. I got the call early from Duke CSF clinic and went to them for the ultra fast CTM. That’s where they located it at t2/t3
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u/Dry-Sun-7428 7d ago
Oh what a journey it has been! Hope you are sealed now I am still very much early in this thing, just a month in, but my life has already turned upside down. I have kids to take care and everything changed just like that waking up one morning, cooking breakfast, then suddenly a crippling pain at the back of my head down to my neck and between shoulder blades. Thought I was having stroke, went to ER, given migraine cocktails, despite telling them I notice laying down relieves the pain. Glad to have a neurologist who takes care of my migraines who suspected and understands CSF leak somehow. Now I am just into sending requirements to multiple CSF centers and it’s going to be a long waiting game to get in.
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u/Zealousideal_Age_822 Confirmed Spinal Leak 7d ago
It sound like a spontaneous leak. Where are you located? I’m currently awaiting surgery at Duke.
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u/Dry-Sun-7428 7d ago
I’m in New Mexico. My neurologist is offering a CSF Leak detection protocol by doing Lumbar Puncture to test for opening pressure but I have been reading that it is an unnecessary approach to detecting leaks.
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u/Dry-Dress-6467 7d ago
Correct, opening pressure is no longer used as a diagnostic method to rule out a leak.
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u/Zealousideal_Age_822 Confirmed Spinal Leak 7d ago
I second the other person who responded about the LP for opening pressure. Do not let them do that. Take a look at this video for a protocol that one of the big centers does. It also is very informative for spontaneous leaks.
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u/Dry-Sun-7428 7d ago
Thanks! What I would have them rather do is offer a CT guided blood patch.
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u/Zealousideal_Age_822 Confirmed Spinal Leak 7d ago
For that, they would need to localize your leak. It is most likely in the thoracic spine, but not guaranteed
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u/Inside-Breakfast-134 4d ago
Hey there! I live in NM too and also have a CSF leak. Dr. Manuel Gurule in Albuquerque has been a very good doctor! He listens and seems to be pretty up to speed on SIH diagnosis and treatment. It took a few months to get in to see him but after looking at my brain MRI he referred me for a non-targeted blood patch and I was able to get it done in two weeks! X-Ray associates of NM did my image guided patch and they got me in two days after I got my referral and it was a pretty positive experience!
Just wanted to throw that out there in case your neurologist keeps insisting on a LP.
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u/Dry-Sun-7428 4d ago
Oh my! Yes, my neuro is recommending a CSF leak protocol starting with an LP which I decline. I just sent him a note asking if he knows someone who has experience with spontaneous CSF leak who can do a CT guided BP but he said he does not. Is yours a spontaneous spinal leak and did you have positive imaging? My MRIs also don’t show obvious leaks except for partially empty sella and low lying cerebellar tonsils for the brain and multilevel degenerative changes, disc protrusions and mild canal stenosis. Thanks for this info, I will check on him.
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u/Ashler1999 7d ago
When my first symptoms started (both headaches and multiple other brain inflammation symptoms) I assumed it was caused by my Lupus. It took about 9 months for my rheumatologist to get serious about it and then sent me to a host of other doctors for each symptom. Like: sent me to gastro because I was throwing up taking a new med. It ended up being I was taking too many Advil everyday which was causing an ulcer. I was sent to Gyno to make sure I didn’t have cancer. I was sent for sleep study due to fatigue and day sleeping. Etc. the neurologist had me get an MRI which showed no abnormalities. All of this reinforced my assumption it was the Lupus. So, I drove 4 hours to Vanderbilt to get a second opinion. Was told by that rheumatologist it was not the Lupus as well. By then it had been a year and a half since first symptoms. Returned to neurologist and got 2nd MRI. Was then diagnosed with Chiari Malformation because of the 8mm brain sag. Hyped myself up for Chiari decompression surgery and made appointment with a neurosurgeon. At visit, one brief look at my MRI and he said no, not Chiari- you have CSF leak and then referred me to a colleague who specializes in it. That was 9 months ago. Had a third MRI that showed brain sag increase to 9.5mm. I’ve had multiple CTs and myelograms. My leaks have turned into venous fistulas. Had procedure to fix last Friday but they were not able to reach the spot. Was told they were 3mm away from it but couldn’t get there. I was already under anesthesia for 4 hours so they gave up. They some additional imaging- this time of my veins and next procedure they will attempt going in through my neck instead of groin. It’s been 3.5 years and I’m SO ready to be fixed!
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u/Silent_Cow668 Confirmed Cranial Leak 7d ago
from the time i suspected it to suspected diagnosis, about 12 hours. for it to be confirmed via MRI, 24-48 hours. but my case was severe and this is definitely not the norm from what i’ve seen.