Someone tell me - what is a Zebra patient supposed to do?

 It's 2:30 in the morning and I cannot sleep. I just found myself typing this question into Grok: when a patient is diagnosed with a lumbar CSF leak and has Ehlers-Danlos Syndrome, and the neurosurgeon says it is too risk to fix, what should happen next?

Why did I ask this question - well, it is an issue I have been dealing with, probably longer than I even realize. I have Cerebrospinal Fluid leak and it is from when I had surgery on my lumbar spine, all that destruction from having Bertolotti Syndrome and then undiagnosed Ehlers Danlos. Surgery came with a surprise of offisication in my dura - islands of it that had to be chiseled away. and it is from when I had surgery on my lumbar spine, all that destruction from having Bertolotti Syndrome, and then undiagnosed Ehlers-Danlos.

It's an issue I now have to live with and I really haven't had instructions from my physicians on how. Earlier this year, over the summer, I landed in an ER with it because my legs went out from under me and I fell. I was already under instructions that should I fall I should immediately be seen, my spine is that bad. The csf leak adds to it - one thing I knew is I should lie flat or else the symptoms magnify. When I went to the ER this summer and told them I have an csf leak and needed to recline or lay flat - I was ignored. I was told the triage nurse woud make that decision and then was told to go wait in the ER. I sat in a hard wheelchair for over 40 minutes without being seen and my symptoms increasing -we asked for help, and I was ignored again. I ended up leaving as I couldn't take the dizziness, the headache and the nausea any longer. I had been doing everything in my power to not fall out of the chair it was so bad. I told my son to take me home - I HAD to lay down.

I ended up having to research what to do and was too fearful to try another ER -

I wrote a complaint letter that the hospital system, UW, supposedly investigated. They came back with an answer everything they did was just fine. They never called me, nor contacted my son and his wife who witnessed the entire event.

When I contacted my physicians, the response from my primary who is with UW, was lackluster.

So yeah -this is what patients like me go through. And we've been trying to tell people for years how bad it has gotten, and it is now worse.

I'll be honest. I don't know what to do - I do not trust that ER, that's for sure. They ended up re-reviewing the complaint and came back supposedly that it was my fault for leaving the waiting room in the condition that I did.

Welcome to healthcare in America.

Yes, I am escalating my complaint as I personally feel the treatment I received could be deadly to someone else - my BP read extremely high. That is one thing they did do when I got there..and I was left to sit in a wheelchair after saying I have a csf leak for over 40 minutes. What if I was having a stroke? What if my leak was turning toxic in my system? The waiting room wasn't even full...

This was my complaint -

This was their re-reviewed response that they claimed was mailed in October but I never received it and emailed them a couple of times in this month looking for it -

Their response makes no sense - 

It's crazy. Much like getting a referral for Mayo. I am on Medicare/Medicaid and since Mayo will not take out of state Medicaid I was told my referring physician needed to call them and just state I would need charity care to help pay that portion. My physician said UW wouldn't allow for the call - which in turn meant I couldn't follow through on the referral where I would have been seen for the Ehlers Danlos and checked for things like MCAS, POTs and more -where maybe they could do something about this persistent leak tying me to a bed now when it acts up .

Someone tell me - what is a patient supposed to do?

I don't know what to do? Keep looking for new doctors and systems? I'm flipping exhausted. 

This isn't everything - I have a lot more going on including a numb right lower leg, edema down my left thigh no one has explained, and more including that spine of mine and some findings on recent MRIs. 

So - world - what do you do when you cannot get responses from major hospital networks? 

Good luck with the direction we're going - stay healthy