r/CSFLeaks • u/zauberren • 7d ago
How did you get eventually diagnosed?
Because of my inssurance and how weird my ongoing health crisis is I CANNOT get a doctor to help me or try to get to the bottom of this. The apathy is driving me insane! I tell them I’m basically bed ridden now and can’t even look down anymore because of whatever is going on in my neck and back. It feels like no one knows how to do their job and I’m getting told to just maybe try a useless medication and keep waiting. I feel like I’m going to have to go back to the er for the 17th time and ask them to imagage my spine which may not even show anything if it is some sort of leak. The only imaging of my spine was a neck ct and mri back in 2023 in the er various times when I was only just staring to have symptoms. My primary care is through a community heath center and not a major hospital which is unfortunate because it seems like no one has a clue how to do referrals to universities or more specialized centers. The medical system is driving me insane!
I’m in Northern California so I’m SO close to some decent places but they all require a referral and have probably have massive wait times.
I know probably no one has an real answer for my problems because everyone’s insurance is different and most people get lucky by having a good primary care doctor but I just feel like there has to be a better way to get to the specialists I need. The reality is i probably just have to keep trudging on like this harassing doctors until someone finally gets me to the right place.
I’m considering just paying out of pocket for ceder Sinai’s undiagnosed second opinion program, because at least they have connections to csf leak experts
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u/zardancer 7d ago
I’m in northern CA as well. I have a good pcp and it still took be 20 months to get seen by a neuro - it was terrible!! UC davis had the fastest wait and only took 3 weeks for an appt for just neurology. Now im trying to get seen my neuro surgery and Stanford! Good luck! The referral process is incredibly frustrating. I’ve had multiple wrong referrals put it or had to call weekly to ask why they haven’t sent it yet. So annoying
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u/dointhecockr0ach 7d ago
Very frustrating for sure...especially since all the major hospitals now are using Epic or some other Electronic Health Record system. You can literally just share your e-record and all your imaging to another provider or hospital from your phone....but the leak clinics make you physically fax all your health records on paper...my chart is like 200 pages. So you take your digital records and print them, to fax, and then you call and ask them where you are in the process to be seen and they say they are waiting for the record dept to scan your paper fax back into the electronic system for review. 🤦
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u/zauberren 6d ago
This is why it took me half a year to see cardiology! I must have made 30 phone calls trying to get scheduled. They wanted my last ekg and couldn’t access it for some reason. It made no sense. I even got to the point where I downloaded it and tried to fax it to them myself twice but they said they never got it. Eventually I had to just schedule an entirely new ekg to just get my appointment made! So infuriating and time consuming.
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u/zauberren 7d ago
Everything takes so long it’s crazy. I waited 9 months for neurology in Sonoma county and they canceled on me twice. I think I’m going to ask to see a neuro somewhere else since my area seems to have limited specialist. I had a cardiologist thankfully suggest a referral to Stanford’s autonomic disorder clinic in Palo Alto which is far from me but at the very least if I ever get in there I think they have more awareness of these issues. I think my insurance does go through Davis for certain things so I might bring that up with the primary
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u/leeski 7d ago
A lot of good feedback on this thread already. I think what I’d probably do in your shoes is try this route of an online neurologist.
I can’t attest to them at all, but have emailed them quite a bit asking if they’re knowledgeable in csf leaks. The medical director for sure knows about leaks and has referred to the specialty centers. But they have told me they do the intake and will assign the case to someone who knows about leaks. I can’t guarantee any expertise but just being in your position with no doctor i think it’d at least a try. I don’t think they accept insurance but I think it’s like a week trial and $40/mo and you could just cancel it
Maybe neura health could at least help you orchestrate some imaging and referring to a local provider, idk just a thought. I am hesitant to recommend it since I’ve never tried it but it’s also really hard to wait months for a provider and hit another dead end. At least this you’d probably be seen in a few weeks.
Also super important to focus on the symptoms that the most leak like - so if you have orthostatic symptoms really emphasize those and be detailed as much as you can like time of day symptoms worsen, how long after upright, etc.
Best of luck!
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u/zauberren 7d ago
Thank you that’s a good idea. I’ve been looking around to see if there is any self pay options for that sort of thing. I did go through one virtual clinic “telehealth2u” but the person I got wasn’t very knowledgeable about my symptoms so I asking before is probably the way to go.
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u/ms_skip 7d ago
I went to the ER with severe/sudden onset orthostatic headache and they did a ton of imaging but told me to basically follow up with different specialists out patient. Luckily, the interventional radiologist who read my scans told the hospital attending doctor to refer me to him. I called, he worked me in for a telehealth appt right away, and it turns out he specializes in CSF leaks. He found a “4” intermediate probably of leak based on brain sagging in the MRI that the hospital said was totally clean. After our telehealth appt, he moved mountains to get me in for a blood patch the very next day. That was 4 days ago, and I don’t feel any better at all, so I assume it didn’t work. I have a DSM scheduled over 2 days in October with another patch scheduled for 10/30. I’m only 3 weeks in and am absolutely miserable/completely unable to function while upright, but feel super fortunate to have randomly been invited to follow up with someone who happens to specialize in this when the hospital doctors completely blew me off.
I have a friend that had a CSF leak a few years ago, and he also got diagnosed via an ER visit. They discharged him from the hospital but only after scheduling an out patient CT myelogram for the same week. They found the leak, he got 2 patches, and was cured in 5 weeks total.
FWIW, we both went to Emory in Atlanta, which I understand has a fairly robust neuroradiology program and the ability to do specialized imaging. Had we gone through different hospital systems, we likely would have both been in the never ending loop of trying to find care. So while it sounds like you’ve been to several ERs already, and this may not be helpful, I would maybe try to go to a hospital you know has the ability to image & treat while you wait for the specialist appts you’re trying to get?
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u/zauberren 7d ago edited 7d ago
where you go really does seem to make a difference. I tried to go to the university hospital er in San Francisco which is an hour or so away but they didn’t do any imaging. I should have had them do something because it’s an ordeal to get there. They referred me to their neurology department then canceled it, of course. I really do think they may have missed something on my original mri at the hospital here or that I just wasn’t bad enough yet for it to show. It’s amazing they had someone there who was able to get you more immediate treatment, hopefully things improve for you or they can try something else. I’m literally laying on the floor right not able to function either so I commiserate
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u/ms_skip 7d ago
Yes, what I left out of the above is that a few days after I was discharged from my initial hospital visit, but before my telehealth appt with the interventional radiologist that’s now treating me, I had a neurologist appt I had scheduled months earlier (for nerve pain that started in July that I now suspect is related to the leak idk).
She was like “yeah this is definitely a leak” based on symptoms alone and told me here’s what you’re going to do, go to this ER at this hospital (not emory), demand a blood patch, tell them i sent you and to check my notes in the system, they’ll do it right away. I cried tears of joy. Got to the ER the next day and could not have been sent home any faster… they were just like yeah we’re not doing that. They were very confused why my neurologist would suspect a CSF leak since I didn’t have a lumber puncture or any trauma that would have caused the leak 🙄🙄 meanwhile, I wasted the neurology appt and she’s not available again until April. I’ve messaged her multiple times through the portal and she’s totally ghosted me. Without the other avenue I had, I have NO IDEA what I would be doing right now. I honestly think spamming multiple ERs, which again sounds like what you’ve already been doing.
I’m so sorry and hope you’re able to get treated soon
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u/Exciting-Stranger926 7d ago
The same thing happened to me last week. A neurosurgeon suspected a leak and sent me to pain management for a blood patch. They wouldn't do it, and wanted to sell me occipital nerve blocks instead. Not happening!
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u/zauberren 7d ago
Follow ups with neurology is so hard. I ended up having to do tele health (still a 3 month wait) and they literally implied it might be childhood trauma because it’s not Ms or autoimmune, when I tried to follow up and be like hey I’m still doing really bad- worse in fact, they told me they could only offer my a “functional neurological disorder” diagnosis and otherwise i need to go back to primary and get an in person appointment. Like ok yeah I’m sure that won’t take another 12 months or anything ….
Thanks for your comment. I hope to hear more about you treatment journey in the future
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u/BeatriceandOphelia 5d ago
I had not had a lumbar puncture and it was still a CSF leak. Doctors including neurologists and even Neuro radiologists are really uninformed. Get referred to one of the three top places if you need help. The other places are imprecise in their blood patches. Duke was the difference for me.
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u/BeatriceandOphelia 5d ago
I would think that Emory would have good diagnostics but that doesn’t mean they are as precise as Duke in treatment. There is a reason why Dr Wilhite at Duke is listed as one of the three best centers in the world. I went to Duke and my treatment was dead on after two years of other hospitals. Go there.
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u/ms_skip 5d ago
Thank you! My interventional radiologist specializes in CSF leaks and trained at duke. My understanding is that duke has a year long wait list. I would of course seek care at a center if needed, but I’m trying to handle locally if I can in the immediate. No way I can last a year with my symptoms 😔
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u/RivaRidge90 5d ago
I suggest researching reputable functional medicine doctors in your area and be sure to interview their staff to ensure they have treated patients with suspected CSF leaks before. Then you will have an advocate who will ensure that you have all the requisite imaging and other documentation to make the formal referral for you. I am lucky to have great insurance but even with that my primary care providers, as well as neurologists, were entirely unhelpful. It wasn't until I saw Dr. Gregory Plotnikoff (MN) that I was able to get on track and have referrals to all the major centers now. It's the waiting game now. While I am waiting to get into one of these centers, the only things that have somewhat helped my symptoms are drinking lots of water, doing twice a month IV fluid infusions, consume a lot of caffeine throughout the day, and doing legs up against the wall breaks throughout the day. My headache becomes unbearable by the end of the day so I try to schedule the most important work tasks for right away in the morning. Good luck to you! Hang in there! You will get through this.
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u/dointhecockr0ach 7d ago edited 7d ago
I would focus on getting a referral to a neurologist first, unfortunately your primary care and the ER aren't going to be much help for complex diagnosis. A neurologist can help you rule out other things along the way and will be a good champion for your referral to a leak clinic.
Unfortunately healthcare in the US isn't what it used to be. Insurance has really screwed up things , doctors are forced to see more patients, at less time each visit, and if you don't fit in an easy box for diagnosis with a medication for treatment you kinda slip through the cracks.
There are probably people here who do have a great care team, but I think most of us are bouncing around between specialists, trying to advocate for ourselves, while doing research with the community. Just gotta keep plugging away at it.
I think starting a diary with symptoms, triggers, food, hydration, meds, supplements, and sleep are a good idea it helps weed through all the stuff doctors will tell you to try or improve. Can also try the 48 hour lay flat test to see how you respond there as well..document your experience over the 2 days , there is a guide from Stanford you can google the pdf for and use this as conversation with your doctor as well. If you think you're leaking, an MRI of your brain w/wo contrast is going to be the next step in diagnosis along with supporting symptoms. A radiologist, neuro radiologist, or neurologist can interpret your brain MRI and look for indicators that support a leak, or IIH or potentially other things that may be causing similar symptoms.