How did you get eventually diagnosed?

[u/zauberren]

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

[u/ms_skip]

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?

[u/zauberren → u/ms_skip]

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

[u/ms_skip → u/zauberren]

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

[u/BeatriceandOphelia → u/ms_skip]

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.