r/CSFLeaks

We got an email a little bit ago letting us know my daughter wont be getting an appointment with Dr. Carroll. Basically too many patients so they would rather give opportunities to go elsewhere. I’m devestated and feel like ucsf messed up chance. They have been calling often to schedule everything and meet with them. Im really sad and don’t know what to really think. I really hoped this was an answer . My daughter doesn’t know yet she will be so devastated .

I've only been leaking for about a month and my symptoms are so severe that I can't even prop my head up most days, I haven't been able to work ever since this started even though I work from home and am on 300mg of caffeine, 300mg of theophylline, 2000mg of paracetamol and 50-75mg of hydroxyzine daily.

I already had some previous health struggles that affected my daily functioning but nothing as incredibly disabling as this. My doctor won't prescribe stronger painkillers so I'm basically bedridden.

I got a blind blood patch last week after spending a week at the hospital and feel like it did nothing. Now desperately trying to find someone that does guided blood patches and doesn't have an insane wait time since there are very little resources available in my country.

All of this is incredibly taxing for my mental health since I can barely do anything and it's hard to find joy in life when all you do is watch videos and consume content. I am also stressing about having to go back to work next week and not knowing how to make it through the day.

How do people deal with this condition for years? I already feel like I can't go on living like this, and I am pretty hopeless right now.

Has anyone had issues with sensation of throat/front neck pulling, fullness, or choking with a confirmed spinal leak?

Hello. I had a CSF leak 9 months ago, which lasted about a month and then closed up. However, I still have tinnitus. Do you think this is permanent? Or does the healing process after a CSF leak take longer? Please, if anyone has experienced this, share your experience. Thank you.

Hi Reddit world. I am desperately trying to find a location that does CT cisternogram with atraumatic needle. I’m in Washington state and I am not able to find anyone. Any help would be greatly appreciated. I’m working with a new radiologist in Texas. She’s currently unable to do the procedure and suggested I look for someone that has the ability to do it and she can send the referral.

Hello, has anyone here had exploratory surgery for a CSF leak?

How did the surgery go, and how long did your recovery take? Thanks 🙂

We all have to advocate our butts off for ourselves to get care with this condition. So I wanted to share how I navigated my way to surgery with Schievink.

****Disclaimer*****
I work for a large corporation with expensive but good health insurance. I also am afforded up to four months paid leave for medical care. I had a successful gofundme to pay my way to LA. In the US not everyone has these resources so I want to make it clear that the only way I was able to navigate this way is because of those factors. ****

I had sudden onset migraine that was 10/10 intense 3 years ago. I lived with it getting progressively worse. This headache would become paralyzing by end of day. The pain was so bad I can’t even begin to explain.

Went to gp. Go said lose weight. It’s your blood pressure. Lost 70lbs, it helped my blood pressure, but it did not help my migraine. It was worsening. We tried gabapentin. Imitrex etc. lab work you name it. Then I started getting these scary thunderclap migraines. They sent me to the ER for fear of aneurism.

There they gave me an MRI. There I showed mild signs of brain sag. It was visible. This was before I started to really deteriorate. They wanted to do a spinal puncture then and there. I refused, wanting to see a neuro first. Thank god too because he was like “uhm. Yeah let’s just poke holes in someone’s spine that may already have low pressure”

Anywho- my neuro is amazing. I feel so lucky I found him. He said look. It could be Hypotensive headache BUT that’s a pain to fix and to work through the channel of approvals (and he was very transparent about that. Laid out what we had to try first in order to climb through approvals). We decided to throw everything we can at it and if nothing works insurance will have no choice but to approve surgery or patch.

I had already tried all the typical first lines and they all failed. So we started Botox. Botox to this day is the only thing that has taken my migraine from an 11/10 to a 6/10 with much less episodes. Then we tried Nurtec: fail. Ubrelvy: fail. Vyepti: fail. Ajovy: fail. Fail fail fail.

In October November of 25 I started to rapidly decline. Fast. Suddenly I was forgetting friends names. Needing to YouTube how to tie my shoes. Getting lost and coming to in a hotel next door from mine. My eyesight was going. My ears OMG. It felt like someone was trying to pull them out of the back of my head. I had episodes so bad all I could do was vomit and lay and cry. I ended up in the er in my hometown. I was having intense visual agnosia.

My neuro and I decided it was time to rescan. The moment of truth. And the slight signs I had of brain sag were much much more prominent. It was go time. They wanted me to do a blood patch and I waited until I heard from dr. Schivink after sending my packet in.

Dr Schievink called me less than a week after receiving my packet and said he saw what was likely the location ballpark of a leak. As my leak was a literal waterfall it was hard to tell. Being he suspected it was in my high thoracic he said not to do the blood patch because it won’t be a durable repair. Let’s just do surgery.

A month and a half later I was in LA. I started with a quad series MRI and non invasive myelogram. Then for the next three days I had to do the invasive myelograms until they found the leak. It took three separate days under total anesthesia to find “Leak-Keisha”. An hour after we found it, I was wheeled into surgery.

Turns out my leak was weird even by dr. Schievinks standard. It was flowing out of a wrapped nodule of nerves and nerve endings. So uhm yeah. That explains the insane pain.

I’m five weeks out of surgery now. I really thought a month out I would be mostly recovered.
HAH!!!!
Nothing has humbled me quite as completely as this recovery 😅

I do have scans of my head, and the exact leak location shot if that helps.

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Does anyone have any information on these and has anyone had one done? I have this as an option for my iatrogenic leak from a needle puncture but I don't know much about them. Thank you!

About two months ago at the end of March, I was twisting my neck to crack it (like cracking knuckles), like I had done many times before. This time, however, I felt a small pain in my head/neck area. I thought nothing of it, and went on with my day. The next day, I bent over to tie my shoes, and out of my left nostril came clear, thin fluid. I googled that, and found CSF leaks. Immediately, I started hydrating and drinking caffeine. Then, over the next few days, my neck began to stiffen, I had brain fog and dizzyness, and there was a pressure in the back of my head. I went to a doctor, where I was told that it probably wasn't a leak, and that it might be allergies and would go away. This is now the middleish of April. My brain fog / dizzyness began to go away, the pressure went away, and fluid came out of my nose only the one time.

I began to feel pretty much back to normal, going for walks, hanging out with friends, etc. Then, beginning of May, I'd say I pretty much felt fine. Now and then, my neck does not turn to the left as well as when I turn my head to the right. Like I said before, I have not had fluid come out of my nose since then. However, I have had what feels like Post Nasal Drip, but it is not the typical consistency of mucus.

Has anyone had a similar situation as this? Have you suspected a leak and then gotten better? I'd love to hear your thoughts and experiences.

Hi community has anyone tried L-arginine successfully, for how long and how much?

Suspected CSF leak after an LP. Thanks very much in advance

Hi, my neurosurgeon thinks I have a spontaneous spinal CSF leak. I also have an underlying connective tissue disorder (being worked up for ehlers danlos but genetics department is booked out a long time) I’ve been reading online and idk if this is just survivor bias, but does anyone actually get better from blood patches?? I feel like my life is over at 30 and not much I find online is helping

Is anyone else here experiencing visual snow syndrome after the CSF leak? I developed visual snow syndrome after spinal anesthesia, but I can't tell if it's related to CSF leak or the anesthetic drug.

I’ve had one or more spontaneous spinal leaks for 1.5 years. One non targeted blood patch after being inpatient for a week due to the severity of my symptoms. Then two embolizations and glue patches I’ve a year after a CT Myelogram showed the root cause is venous fistula, with “many suspicious areas.” While all of this has taken me from non functioning 8-9/10 pain down to 4/10 pain and somewhat functioning, I’m still not ok and haven’t had hope for a long time. My current doctors have admitted they can’t do anything more for me and recommended I contact Cedar Sinai.

I did intake at Cedar Sinai and sent my medical records over a month ago. And I’ve been fighting and following up with my current hospital/practice for weeks to get them to release and send my images to Cedar Sinai. I received a call a couple days ago from Dr Schievink himself who completely validated everything and wants me to come out for testing and treatment. I cried tears of joy and relief to be validated and to speak to a world renowned expert in CSF leaks who is willing to not only speak to me but see and treat me SOON. The thought that this horrible experience could soon be over seems unreal.

I’m sharing because I’ve been through hell. Ive been gaslit since day 1 by hospitals, ERs, doctors, surgeons, you name it. I’ve fought, cried, given up, been bed ridden, came back and fought again because i had no choice - I’m a mom who needs to be strong for my daughter. I’ve gone to school for many years to get to where i am with my career and refuse to give it up for a mystery illness that nobody will help me with. I’m too young to never be able to do normal things again with my family. So i keep fighting, trusting my gut, pressing forward, and sharing. I have hard days and weeks when i can’t do anything but wallow. But i always come back angrier, more determined, and ready to burn things down until I get answers and get to the bottom of this. And you can do it too.

I’ll come back and share about my Cedar Sinai experience if it’ll help anyone. Sounds like I’ll be able to get out there in the next month or two.

Idk if it’s runny/watery I’m not 100% certain, it doesn’t do the bullseye thing on a tissue though. It taste salty(idk how to describe it??) though and Google varies on if that’s normal or a csf thing
Idk if it’s relevant but I have allergies

I’m really freaking out :(

Hey! I wanted to ask if anyone ever felt worse after a blood patch? I just got mine 11 days ago, and everything has been so much worse since (minus the first few hours).

Right after the patch I felt great. I felt joy for the first time in months (after my lumbar puncture), the world felt more colorful and it was like my sense of smell was better? I did get massive pain in my lumbar region from lying flat after the procedure, but during the night it just completely disappeared.

On day two, I got a headache in my entire head while lying down (non-positional, which went away on the third day), then had a pounding headache when getting up that I've never felt before (my low pressure headaches have always felt like a pull in the back of my head).

But since day 4, my symptoms have been insane and all over the place! The low pressure headache seems to be back, but only sometimes. I also get a new, very strong burning sensation in the back of my head - sometimes it starts after being upright for a bit, (but it doesn't go away after lying down), sometimes it starts while I'm lying down. Today it even started after I woke up in the morning before I got up! Occasionally, when I get up, my head feels like it's about to float away. I have pressure in my sinuses and forehead, but it doesn't get better when I lie down, so not rebound? I get pulsatile tinnitus a lot. I feel nauseous all day long, too. My brain fog and memory have been impacted by the leak, but now they're even worse. One day I had burning + what felt like a low pressure headache, then I took a Tylenol, expecting possible relief from the burning, but the low pressure headache went away too (???). My ears pop and my tinnitus is loud, and the phonophobia I hadn't had in a while came back.

I just have NO idea what to make of all this. Before I had the blood patch, my issues were impacting my life, but not unbearable. I had brain fog and memory issue and a 3-4/10 pulling headache that was better on some days and even went away every once in a while. I occasionally took walks with minimal pain and even managed to go to a shopping center for a few hours without any pain at all. I thought the blood patch might be the final push my body would need to get back to normal.

But now I feel SO much worse, and my symptoms are extremely confusing. I can't even tell whether or not I blew my patch. I am in a very bad spot mentally, I keep crying.

I had my spinal surgery 5 weeks ago.

When tf do I start feeling better 😭

I just feel sick alllllll the time. The nausea is unbearable. I started diamox but the full dose was way too much so I’m doing a half. I can’t really tell a difference.

I’m feeling so discouraged. I just want to be pain free. I want to be normal and play with my child and I can barely get up or eat without vomiting.

Hey everyone, I’m sharing about the website for sharing our leak stories again, I post here every few weeks or so as I know not everyone sees every post. If you haven’t seen it yet I hope you check it out. Thank you!

Reading through the stories submitted on the website has been… a lot, in the best and hardest ways.
There’s so much that people carry that never gets seen.

That’s really what this project is all about, making those experiences visible to the public and doctors.

If you’ve thought about sharing your story but aren’t sure…

It doesn’t have to be perfectly written.
It doesn’t have to be “resolved.”
It doesn’t have to look like anyone else’s.
It can be at any stage, beginning, middle, end, and everything in between.

Ongoing, complicated, uncertain, all of it belongs!

Thank you SO SO much to everyone who has shared so far

The space exists because of you. 💜

https://spinalcsfleakstories.com

I’m nearing my endovascular Embolization procedure (T9) and could use some advice from people who have gone through it, or decided not to have the procedure.

I’m worried at the thought of trading a pain I have learned to manage for something that could be unbearably worse. I understand that rebound headaches are common and people experience a pain belt around the Embolization location. My leak pain started at a constant 9 around a year ago. It’s gotten much better over time and the pain has significantly reduced. The pain is still lingering in the background and when I get coughing fits the pain significantly increases. It’s a cascading quick downhill any time I get sick, but otherwise have for the most part been able to manage my symptoms (sort of) with low pain.

Any insight is appreciated into people’s experiences post procedure, or if anyone has opted not to get the procedure, how they are fairing. Has anyone’s symptoms improved over time, procedure or no procedure?

After a year of cognitive decline, seizures, temperature dysregulation, weakness, numbness, tingling, and loads of sweet liquid coming down my throat, giving me thrush, i finally found a doctor to give me surgery. he said he found a “suspicious area” and cauterized it. after a few days, the pressure from the leak burst it back open and i was back in hell. now, ive just spent 21 thousand dollars (all i have left) to go see a doctor in Denver, who did use a graft, but on a different fucking sinus, after begging him to plug up the ethmoid beforehand. i am at the end of my rope and want nothing more than for life to finally end. it is too painful. what should i do?

I’ve had two blind blood patches as it didn’t show on imaging. I had the second two weeks ago.

I felt a lot better after the first one, but wasn’t 100percent. Hoping this is the last one, but was curious how it was for others?

I’m not sure how long I’ve had the leak, somewhere between 3-7 yrs.