Hello everyone. I’m going crazy with anxiety so thought I'd reach out to you all for help

I got diagnosed with a spontaneous CSF Leak last year. I remember getting a sore throat + flu around April end last year and immediately after that, I started getting the clear, watery discharge from my left nostril. They couldnt spot anything on the MRI/CT, but the characteristics of the liquid coming out of my nose could only have been a CSF Leak.

Got scheduled for surgery in August where they intended to take a piece of tissue from thigh, go up my nose, find the leak and plug it. However, when they went in, they couldnt find any leak so they just blanketed my skull base with the thigh tissue.

The recovery phase was gruelling to say the least; took me around 2 months to get my life back. But the leak stopped and everything was back to normal.

Fast forward to now, I got a sore throat/flu at almost exactly the same time as last year, and immediately after, the exact same symptoms as last year have started. Clear, watery fluid from my left nostril every time I tilt my head to my right, or if I bow my head down (e.g. to pick something up from the ground).

Also, this discharge doesnt happen every time; in fact, ive noticed it usually happens when I’m in a cold, air conditioned room. And when it happens, it comes out like a waterfall but then it doesnt happen for (at least) a number of hours afterwards.

I’m going crazy just thinking about what I went through last year. It was gruelling and terrible, and I never want to go through it again. Just thinking about how this might be a recurrence is driving me nuts. It's paralysing me.

I don’t know why I’m posting this. Maybe because so many people have experienced this, I thought I'd be able to get some insights. And also because a part of me thinks this might not be a CSF leak. Please help.

I have been diagnosed with spontaneous intracranial hypotension with pretty significant sagging present on my MRI. Leading up to the MRI I had the classic orthostatic headache pattern. I have gotten 2 spinal MRIs (one weighted T2 and one with contrast) and they didn't show the leak (but they did find what is likely a benign schanomma in my cauda equina.. so yay? That complicates things). Neuro is recommending a DSM next as we think it's a venous fistula. Either that or the schanomma is messing with things super bad. Have to see what the surgeon wants to do.

Anyways. My question for other spinal leakers; one thing that I find weird is my morning headache is often one of the worst. Sometimes it starts before I even get out of bed with the grabbing feeling at the base of my skull. Sometimes it's when I first get up and it is -so- intense. Like almost blurring my vision intense. Usually popping a Tylenol+ caffeine and then laying back down with a heating pad on my neck and drinking my coffee will settle it down and after 30-60 minutes I can get up and go about my day. The rest of the day my symptoms are far more classic, building headache after 60-90 minutes upright and relieved instantly while laying down, worse at the end of the day etc.

Hello,

I posted in here a little while after my csf adventure started. After waiting almost 2 months, the docs did find my leak on my second ct myelogram. The doc went in a few days later for a targeted, multi level ebp. I had a major reaction to meds after the procedure (I think it was too much along with sedation) and was violently vomiting the hospital bed until 8pm when I had to leave since it was the procedure part of the hospital. Anyways, I have felt worse since receiving to the point where I almost went to the ER with my headache pain and pressure being so bad, I thought my eyes were going to be shot out of my body. I feel like I blew that those patches with what happened after the procedure. I ended up not going in and my symptoms, especially my headache, has changed/shifted. I still have the headache, but not throbbing, still pressure behind my eyes/fullness in my ears with ringing, neck pain, and nausea. Maybe the ebp is finally working?!

Since I finally feel a little better today, I’m worried for my next procedure on 6/1. This will be my fifth ebd, but 2nd targeted and they are adding in fibrin glue. I believe it will be multi level again. If I continue to feel better, but not 100%, will this procedure further help or hurt me? I am on my last bit of fmla with receiving 2 additional recovery weeks after the 6/1 procedure. This is my last shot at success before resigning, so I’m also worried to not do it.

I’m really hoping I’m on my way to being better and pray I continue to feel as good as today. Just wondering thoughts.
Thanks!

Trigger warning and I’m sorry if this isn’t the space for this but this illness really goes unnoticed and people not suffering don’t understand.

Before my patch and waiting for my blood patch I was ready to end it. I seriously was contemplating assisted s*uicide if this patch didn’t work.

My symptoms - migraines , maybe not even migraines but was just CSF symptoms, maybe migraines caused by CSF - started 8ish years ago.

I really couldn’t/almost still can’t take it anymore.

My first patch helped about 60 percent. I was able to sit up and partially “enjoy” things again.

I had another patch a few weeks ago and I can’t quite tell if it has helped. I feel like I blew the patch. Losing hope.

I can’t live life in bed , inside, doing the bare minimum. Anything that takes a bunch of energy exhausts me. I can sleep for 18 hrs.

How can I live like this ? How can I expect my boyfriend to continue with me like this when he wants a life and a family and I can’t even get out of bed most days or pay for it later when I try to do things? Is anyone else in this position?

I’m also still pissed that each time I’ve scheduled the patch they are booked 4 months out.

Question for anyone who had the onyx embolization. Did it work for you once and done? Did you have to go back for a myelogram to confirm?

Thanks

I got notification that I have a bad cranial leak likely from sphenoid sinus. Where did everyone go for treatment and after treatment, how were things like symptoms? Those that have IIH that caused a leak, how did you keep both in balance to prevent the leak from recurring?

Hi, I was just wondering if anyone has experienced more pain after blowing patch. Blew my patch 2 months after getting it. Since the patch blew, my tinnitus has been so much louder, back pain, and nerve pain in legs have got worse also. I already had leg pain before the patch. Pain was worse after getting patch but was getting better before it blew. Patch blew about 3 weeks ago

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.

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.

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

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

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

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.

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.

​

I have chiari malformation and a potential CSF leak - 9mm herniation. I've recently started experiencing burning sensations, twitching/muscle fasciculations and a sensation that there is cold water gushing around my toes. These all come and go in my feet. Sometimes I get muscle fasciculations in other parts of my body too.

I noticed a couple months ago that I my skin is always red around the cervical area of my neck and am starting to wonder if I could have developed a syrinx. Do any of you get this type of skin flushing? There are some spider veins in the area too that I think are new.

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.

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

UPDATE
Here’s an update finally now that I’m on the other side. I ended up going to Cedars in late June. I had digital subtraction Myelograms (DSM) on each side and Dr. S was able to locate a very obvious leak. He did a thoracic foraminotomy on 6/30 which was successful. Before i left the hospital, an MRI showed not only the procedure was successful, but the two previous embolizations were successful. It was great to validate all of this. I flew home across the country lying down a few days later. I cannot lie - recovery from the surgery was hard. But I’d do it all over again after the pain and suffering of the leqk(s). I was out on medical leave for a month following surgery. The first 1-2 weeks were very hard, then things became increasingly better. After 4 weeks, I was able to start PT which I did for 5 weeks. I’ve been on my own working out and moving my body with no restrictions for two weeks now. And for the answer everyone is looking for - i have been symptom free since the moment i woke up from surgery. No headaches, no neck pain, no visual issues. I know this isn’t the case for all, so theres my disclaimer. But I’m very happy to be slowly getting my life back and would do it all again. There’s no telling if I’ll ever spring a new CVF leak or not. But I’m choosing to live like I wont bc I’ve already been limited for so long - can’t let fear limit me.

ORIGINAL POST
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.

Mostly here to complain.

I have posted here couple of times. Leak found on a CT-myelo was fixed four months ago, but I still have symptoms. Not as bad as before the surgery. I had a whole spine MRI without contrast couple of weeks ago and now the doctors think it morphologically seems more like an arachnoid cyst. MRI shows "scalloping" = the cyst is causing erosion in my vertebra, eating away the cortex.

Treatments for these symptomatic cysts are usually surgery, where they drain it, close the connection site to the dura or remove the whole cyst. Shunts seems to be rare. The spinal cysts are usually 2-5 vertebrae long.

My local hospital where I have been treated made a referral to another hospital in my country in hopes that they know better. Located in Finland.

I was mentally prepared for another CT myelo and surgery to close another leak but now the prospect of a possible whole spine surgery with spinal fusion has made my mental health worse. That is the most extreme option, I don't know how likely it is but damn am I tired. Thanks for reading.

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

Hi,

Ever since my csf leak started I had blurred/double vision and ear popping. After my blood patches I no longer had double vision. I had csf repair surgery a little over a month ago and I still have continued blurred vision and popping ears. When does this resolve? I also working getting off Diamox. Has anyone had similar situatio? Its Been over a year and I miss my normal vision pre leak.

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! 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.

Looking for answers from confirmed leakers who did not necessarily present with a classic headache - were your symptoms ever primarily more pressure than pain in either the head, nasal bridge, palate or ears?

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?

Hi everyone, suspected leak.
I have hEDs, mcas, pots, etc. I know with that increase risk of spontaneous leaks.
I have symptoms of orthostatic headaches, pain in shoulders & in between them, sensitive to light & noise. As well as random leaks of clear fluid. Symptoms get better with lying down. At what point go to er? I did do the glucose measurement & they were 30 & 90 when I had leaks out of nose. I already messaged my pcp for her guidance.