The American Health System is the equivalent of Alice having tea with the Mad Hatter

My family doctor retired.  That was a tragedy.  Nobody knew my struggles as well as my doctor and more importantly, his staff.  His front desk staff was epic in getting the correct paperwork to where it needed to go and in short time.  Now that he is gone and nobody stepped up to take on his patient load, we all scattered into the wind.  I found a doctor who was new to his practice, I quickly made an appointment and filled him into my situation.  I announced that I needed a surgeon that knows how to perform surgery on PVNS that will do it willingly and not be a complete renegade about it.  Getting a simple answer is not such a simple process.  Just to ask a surgeon, "can you remove PVNS from my knee?" I have to go see my doctor, get a referral to a surgeon, go see the surgeon, ask the surgeon the question, and usually get told "no".  Then back to square one and onto the next surgeon on the list.  I get to go through this process over and over with no end in sight.  This is because PVNS is still so unknown that not many surgeons have performed surgery on it and therefore I will not allow myself to trust a surgeon who has no idea what they are dealing with.  I'm not looking to be an experimental subject. 

Another doctor said they could call around for me so I had an appointment and explained my entire PVNS story only to get an email that a referral would be sent to the surgeon of my choice. That's not exactly what I had in mind so I had to go back to the new guy.  The problem is that over 3 weeks ago I was supposed to go through this referral process with a surgeon that my new doctor found on google search.  Only, the referral that came in the mail was for the first surgeon I saw who told me he would send me to someone who would "cut me up good".  No thanks creepy surgeon guy.   So I asked the referral to be fixed.   Another week went by and I called to get an update, I was left on hold.  I called back and asked for my call to be returned.  Since I didn't get a response, I called again last week and again asked for another message be left for the referral clerk to call me back.  Since another week went by without a response, I went to the office and demanded to get an answer.  I told them I was going to rant but I just need to have communication.  They told me there were even more hoops to jump through before I could even start going through "out of network" referrals to surgeons of my choice.  They showed me a name I never saw before.  So my choices are to go see the mystery doctor or to call the insurance company and see if I can get someone track down a surgeon for me.  If that is possible.  Or I beg them to let me find a doctor who knows what they are doing.

So I'm feeling very upset about the lack of communication, the inability to feel that I can trust the staff of my new doctor, the system in general, and the fact that I still have no idea who can remove the tumors that keep growing in my knee. I'm pretty sure that I'm stressing out over all of this nonsense and causing even more health problems.

Finding a doctor for PVNS

My family doctor who has to write the referral to see a surgeon has retired so I had to find a new doctor to write referrals.  He is new all right.  I told the new family doctor that I would pretty much be telling him what to do since he has never seen PVNS before.  We didn't know who I could see so he looked up "PVNS surgeons in Seattle" and up pops a guy I had never heard of before.  The family doctor said to go ahead and make an appointment and I can see him.  I do that and the PVNS surgeon's office said first I need the referral.  So now I have to call the family doctor to get the referral because I already got one in the wrong doctors name.  It would be nice if I could just call the surgeon and ask if he can even do this surgery.  I have no idea.  So I have to go through this process over and over until I find the right surgeon.  I have heard stories of people getting their leg cut off because the doctor thought it was cancer or not knowing what it was and sewing the patient back up without removing any of the tumors.  Surgery is not something I'm going to let just any doctor do to me.  I will not get surgery again unless I trust the doctor and if I have to be completely crippled during the wait, so be it.