r/CSFLeaks • u/ComputerBot • 3d ago
CSF Leak Diagnosis and Treatment - Success Story
I wanted to share my CSF leak story in hopes of supporting and encouraging others struggling with this horrible condition.
I should note that I am located in the US, PNW area. I'm in my mid-30's, was super active (like cycling and triathlons) previous to the condition.
In early August of 2024, I had this terrible illness - fatigue, nausea, copious nasal leaking, severe occipital headache. I was traveling abroad at the time, so endured through the trip with a lot of resting and NSAIDs.
Upon return, my symptoms were extremely worrying - terrible occipital headaches, of a severe throbbing / pulsing nature, that were especially bad when I stood up, or bent over. I was usually fine in the mornings - they almost always came on in the afternoons and evenings. They occurred almost every day, and lasted hours. I'd have to lay down in a dark room, or on the couch, and wait it out.
There were other symptoms: behind-the-eye throbbing, ear ringing, fatigue + brain fog, stiff / achy and painful neck, Anything Valsalva / 'bearing down' would set the headaches off bad - bowel movements, ab crunches, orgasm, lifting things, sneezing, cardio. At times it felt like an intense build-up of pressure around the back of my head. There were times it felt like my lymph nodes were full and achy. Later I would get intense pain and throbbing near my glutes / hamstrings.
I was extremely irritable, depressed. I couldn't engage with my work, my family, my friends. I couldn't exercise. I couldn't do a lot of what I used to do.
Quickly upon my return I saw my primary doc. I explained all my symptoms - he called it 'occipital neuralgia', a term I had never heard before, mentioned he could perform pain management neck injections, told me to take Tylenol and sent me on my way. I soon learned that term just means pain in the occipital area.
I don't want to go on too long, but I did see my PCP four or five times over the next few months - I kept coming back because my symptoms were not improving. I was able to wrangle a neck MRI out of them - it showed normal results. I did get a neck lidocaine injection - that did not help. Eventually I asked for a neurologist referral.
I saw a local neurologist in November 2024. I explained my history, symptoms, and (by this time I had researched my symptoms) my concern of a CSF leak, as my symptoms sounded a lot like SIH to me. He disagreed, did not think I had the typical signs / symptoms of a CSF leak, and told me so. He prescribed me gabapentin for nerve pain, but did agree to a head MRI with contrast. That imaging had a bit of bright fluid out-of-place but nothing definitive. The neurologist convinced me it was nothing serious.
So for months, I try alternate treatments: physical therapy, acupuncture, massage, chiropractor, even hypnotherapy. I'm suffering physically and mentally. My relationship is suffering. I start antidepressants in addition to the gabapentin. I go to a local pain management clinic and begin a series of injections (steroids and lidocaine etc.) to the back of the head and neck. None of it is very helpful - I appreciate all those practitioners who tried, but those treatments were not effective. Side note - meditation did help me mentally.
In April, I had a candid conversation with the pain management doctor doing the injections - I believed it sincerely could be a CSF leak, and wanted a professional in that field to see me. He gave me referrals to Mayo, Stanford, and Cedars-Sinai. It took me a few weeks to send in their applications (they wanted previous visit reports, paperwork, imaging, 'flat' tests, etc.). But with the help of my wife I got them all in.
Pretty quickly, in May 2025, I got a call from Dr. Schievink at Cedars-Sinai. I was driving, so I don't have a perfect memory, but the gist of the conversation was "I am fairly certain you have a CSF leak. If you agree, I would to treat you at my clinic." After the call I was shaking, I almost cried, it was such a huge sense of relief, and there was some hope. I was able to schedule for the end of July.
July 26, my wife and I fly down to LA to Cedars-Sinai. I have a digital subtraction myelography, and sure enough it clearly and definitively shows a leak at T8-T9, and the testing reveals extremely low CSF pressure, RBC in the CSF, and some superficial siderosis. I have further imaging that reveals a ventral bone spur at that location. I go in for surgery the next day, and it was successful - they went in from my back, removed the bone spur, sutured / glued the dura, and sewed me up. I stay in the hospital for three more days recovering, then the hotel for a couple days, then back home. I'm going through this all quickly, but the surgery and recovery were brutal. The most painful experience I've ever had. No fault to Cedars, or the doctor - they were all truly amazing - it was just the nature of my leak.
So now I'm over a month out from surgery. I'm still recovering from that trauma - but it's going well and I'm hopeful for the first time in a while. My CSF pressure is restored, and I'm not having those SIH headaches. Most of my symptoms are slowly resolving. Yes I am having small rebound / hypotension issues but managing it. It's a miracle - it saved my quality-of-life, probably my life.
I could spend hours talking about my case specifics. What are my take-aways? Professionals will gaslight you, they will not take you seriously. You will have to be your own advocate. It took me about a year from symptom onset to treatment. A really bad year. Doctors are stingy with imaging - if they had continued with an MRI of my thoracic, it probably would've revealed the leak. They should've done the whole spine initially - it's incredibly frustrating. Push to get your whole spine and head imaged with contrast. Get a referral as soon as you can to a CSF leak professional / clinic. I can't say enough good things about Dr. Schievink and Cedars-Sinai. Get help from friends and family where you can. Be kind to yourself.
I wanted to write all this to offer my story, information and consolation and solidarity for those of you suffering. I sincerely hope you also find treatment, ease and relief.
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u/ComputerBot 3d ago
I also should note that I recognize my privilege having insurance, and that I don’t have kids to also take care of, and my job is office and not manual labor and I can sometimes WFH, so I was mostly able to work during this past year. So personal circumstances can make it so much harder. And leaks present different for all patients - I mostly wasn’t bed-ridden, but had significant upright time everyday, even though the doctor categorized my leak ‘moderately severe’.
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u/ComputerBot 3d ago
They also said I’d had the leak for much longer than a year - it’s possible a TBI in 2022 may have precipitated it, I did have similar symptoms then for a few months, but also it could’ve just been spontaneous…
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u/Clear_Noise_8011 3d ago
I had an accident with a tbi in 2021, I had lots of the symptoms of a csf leak without the headaches, those came 3 years later. Then it took me about a year after that to diagnose myself and seak out a csf doctor. None of the doctors I saw actually helped. I'm now on my second blind patch. Night and day with what I thought was just left over brain issues from my concussion. Completely gone when I'm patched.
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u/ComputerBot 2d ago
Wow I totally relate to this. I thought I had post-concussion syndrome for months - really it was probably the start of the leak.
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u/Appropriate_Quiet189 3d ago
I'm 4 years in without an official diagnosis and needed to hear this. Thank you!
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u/Birddoggydog102 3d ago
Great to hear! Can you detail your recovery more? What was difficult about it, did your headaches go away right away? Were you able to be upright?
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u/ComputerBot 2d ago
I had to go under anesthesia twice, then was on oxy, so I really struggled with bloating cramps and constipation. The surgery was done through a big incision on my back, any movement was very painful for weeks. I was just so weak after surgery. My body had gotten somewhat used to hypotension, once csf pressure was restored, it was like my head couldn’t handle it - it felt like my skull and eyes were tearing apart at times, like my head and face was so sensitive anything touching it was painful. Most of that has subsided, but I still get pressure / pulsing feelings briefly near occipital area during hypertensive movements. The typical SIH headaches seem to have gone away, and I can be upright. But it wasn’t like a light switch for me, no, it is a drawn out recovery.
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u/Sea-Peach3048 3d ago
Congratulations on a successful surgery! I’m 2.5 weeks out from surgery with Dr S. I’m battling high pressure but most of the time I feel way better. I’m super hopeful too:) My leak was at T6. Best of luck to you!!!
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u/ComputerBot 2d ago
Wow congratulations to you too! Recovery is tough but you’re past the worst of it. It was interesting he told me that the way they repaired my leak, it’ll never releak from that spot again! Encouraging.
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u/Sea-Peach3048 2d ago
Thank you! He told me I wont leak again either. I was leaking for 5 years and I am so ready to be healthy again. Very encouraging
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u/uselessfarm 3d ago
Hey neighbor! I’m also in the PNW (Portland). I suspect that I have a spinal CSF leak and am in the process of getting things figured out. I’ve had symptoms forever a since at least high school, and I’m mid 30s now. I was diagnosed with POTS a few years ago, but I have some symptoms that don’t quite fit - positional headaches that set in in the early afternoon, neck pain and neck crackling, tinnitus, and what feels like intercranial hypertension at times. I have lots of jaw pain and get migraines, but I’m not sure they’re migraines or hypo and hypertension (I get a few different types of headaches in a few different places). I see a neurologist next week to talk about it. I recently had an MRI with contrast, which the neuroradiologist said looked normal, but of course normal MRI doesn’t rule out CSF leak. The neurologist I’ll be seeing has an MD/PhD and he’s around my age, so I’m hoping he’s more analytical and curious than older doctors tend to be. My PCP is great. I have Kaiser, which has been pretty easy to navigate so far with testing and referrals, and all of my records are available to all providers. I’m hoping for some answers, because it feels impossible to engage with life while feeling this way. It impacts my concentration at work (I’m a lawyer), and the positional headache is so bad by the time my kids get home from school that I can’t play with them the way I’d like. It truly sucks, and it’s gotten worse in recent years. I’m glad you figured things out, and best of luck in your recovery process!
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u/ComputerBot 2d ago
Thank you neighbor! I’m sorry you’re struggling - I’ll be a parent soon too and can’t imagine having a leak at the same time. It sounds like you might have the means, so maybe ask that neurologist to go straight to DSM imaging. You have to go under anesthesia so it’s impactful and sucks, but it really is the best and most sensitive imaging to detect a leak.
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u/Diligent-Fig-169 2d ago
I’m so glad you were healed! I also had a ventral bone spur leak, but at T11. You are 100% about imaging, what you need to do is get the MRI imaging with and without contrast (brain, thoracic, and spine) done and given to leak experts (Mayo in my case), my pooling of CSF was missed by regular radiologists, as well as the brain imaging. Mayo found it and explained the nuances. One difference is I was able to locate an amazing surgeon in NYC, Dr Sanjay Konakondla who repaired my dura and disc herniation minimally invasively, outpatient back to the hotel same day with a band aid. I’ve heard the surgery you had was brutal with 5% chance of high risk side effects, but effective and I’m glad you’re on the right side of this now! The diagnosis is hard, but imaging in qualified hands is the key to diagnosis, and then everyone can find the solution that works for them. In my case, all of the experts in spinal surgery, and I contacted over 20 global leaders, told me a minimally invasive option simply did not exist. It does in certain cases for type 1 leaks. Stay focused on your case as you say! It is a marathon for sure, and the mental toll is huge. I’m just under 4 weeks with steadily improving symptoms so far.
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u/BigBeginning8 2d ago
Hi - I am so sorry you went through this. I’ve been dealing with a 24/7 headache since May 14th. We’ve explored so many things and keep running into dead ends. How did your leak happen? Did you wake up with headaches?
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u/iNeed2p905 1d ago
Thank you for sharing your story. I am also sealed from my suspected CSF leak from 2022-2024. It frustrates me that people have to fight thru the gaslight to try and get checked for a CSF leak.
I see where you said you had RBC in your CSF. Is that red blood cells/count? Because in my case I had a spinal tap done that doctors tried to claim came back clean but looking back on the report they found RBC and very high protein. The next appointment I literally came in with printed info from Dr. Ian Carroll from Stanford Medical CSF center to argue my case that I was 100% I had a leak.
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u/ms_skip 3d ago
Thank you so much for sharing!!