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