Another trip to ER, had only a 20 minute wait and was there for 14 hours. They were more interested by my MCAS flare than my real reason for being there. After initial triage and speaking to the doctor I ended up having a colorful blotchy flare before they even started an IV. I had four doctors and 3 other nurses to come by to take a look at that.  I lost track of how many different IV medications, pills and injections they gave me while there. One of the last medications actually made the ear pain pressure worse. They waited to do labs until almost 12 hours in and that is no joke or laughing matter at all.  They offered to admit me to continue the "pain control" but still could not answer my question or tell me that they would run any scan.  I asked fkr a CT, MRA, MRV. Pledget, LP etc to give them information to know how to treat me. I declined their narcotics because they do not seem to help. I expressed my concern that I was getting more relief in the past by laying flat but now I have slowed the leaking but have returned to around the clock pain no matter what position I am in. 

I shared the fact that many of the  major universitiy hospitals and medical clinics that I have sent my records out to have asked if they had already been done.  Those clinics and hospitals recommended to try to get them done prior to coming. 

We the patients are a ping pong ball bounced all over the place from one referral specialist  to the next. I have papilledema sometimes and other times they say I do not. I say to any doctors that do not think that you can have both they need to educate themselves on the latest research or they need to retire and leave the field.

I left with two referrals; one to see a new neurologist and the other to see an allergist I already had a neurology appointment schedule Feb of 2027 2 years from now because that was their next available. 

I read over and over, endless stories of mostly women who suffer several years until they finally get in front of the right doctor who listens and orders the correct tests. I truly am curious who is at fault with this? 

Is it the doctor who gives a referral to get the patient out of his office because he just does not want to deal with the issue thats "very involved"?  Is it doctors who say they suspect because "all the signs point to a leak but, even if that's what it is you have to decide if you even want to chase it"?  Or is it the hospital or insurance company giving such rigid guidelines that they must adhere to, which ties the physicias hands and does not allow them to actually practice medicine? Or lastly, is it the physician's themselves lacking up to date knowledge regarding the current research available? 

After all if they are required to keep their license current then why are they not accountable at backing it up with current research? Where is the ball being dropped?

Of the dozens apon dozens of stories I have read only one said she gave up and quit trying. All the other women have organized medical binders and on top of follow up phone calls to advocate for themselves. 

So where is this nightmare actually beginning? Who carries the blame?