When I first learned, in March of 2008, that I had this thing in my head called an Acoustic Neuroma, I was completely lost. I felt fortunate in the respect that I had good medical insurance, but that wasn't much help in terms of finding surgeons who actually knew what to do with an acoustic neuroma - what I didn't want was some lay-neurosurgeon who viewed AN surgery as some big adventure. I remember going to my insurance company's website and doing a search for "neurosugeon". Well, that was horrendous - it produced hundreds of results (I live in the greater NYC metropolitan area) with absolutely no way of ascertaining what type of neurosurgery any of them did.
I remember being paralyzed for the first few days. I'd sit at my computer and do endless searches on my insurance company's website, trying to find out what kind of surgeon I needed. Willie put out a query on the ANAUSA website and we got a couple of names - I ran them through the website and NONE of them was a participant in my plan. I really spiraled into despair at that point. In fact, I would say that was the most stressful part of this entire journey. I called a friend in NYC who called her ENT and was given 4 names - NONE in my insurance.
At the time, I didn't know that there are actually 2 surgeons involved in the surgery. Why is that significant? Because if either one of them was in my plan, there would be a way to get the procedure covered. I went through several days of what I recall as sheer hell until I found the name Golfinos in my insurance plan. Bingo!! He worked with another surgeon named Roland who had been highly recommended through several sources. It all worked out. Golfinos admitted me and submitted all of the insurance paperwork, including approval for the insurance plan to cover the cost of Roland. I was extremely fortunate that I was able to get two such remarkably skilled and experienced surgeons. And, I was able to have surgery at one of the leading medical school hospitals in the country.
We ran up against some post surgical challenges since my recovery was not a smooth one in many respects, and I ended up needing to be under the care of Dr Roland for a long time (still am, in fact.) We were able to negotiate a rate with him for my ofice visits and we pay cash for all of them. Our insurance company does not pay one red penny, but it is worth it to me to continue under his care since I have had so many challenges with facial nerve recovery. And, I really, really like him!
I have gotten my follow up MRI's with Dr Golfinos and that's gone along just fine since he's covered by the insurance.
And then, today, I get a letter in the mail from Dr. Golfinos' office saying that as of June 23, he will no longer accept my insurance. What???? Shit. I must say that it has left me feeling ... a bit scared. What if the damned thing grows back? I would have to seek out other surgeons since paying out of pocket for brain surgery isn't really an option. Yes, I know that I am looking at the dark side. I'm entitled to feel upset for a day. And, then, I'll figure out what to do. Best case scenario, I will continue with my aftercare with Dr Roland and have him read my annual MRI. Worst case, I will have to look for new doctors. But that would suck. Really suck. I'm hoping for Plan A...
Damned insurance companies!!! Honestly... Worst case I guess Dr Rolands will be able to recommend somebody else that might be covered by them? Lets hope for Plan A. I don't like the insecurity of the situation either. My docs are on the other side of the world, and the ones here have black-listed me, all three of them. 3 in the entire country that is. eeeeeeeeeeeee We'll be fine Debbi! :)
ReplyDeleteI think about that alot actually - I am not sure what I'd do if my docs were halfway around the world. Why did have your local docs blacklisted you? Shouldn't that be illegal?
ReplyDeleteDr. Golfinos will refer me to another neurosurgeon, but the problem is that he and Roland are the only ones who do acoustic neuromas. Let's just hope the sucker never grows back.
Long story... I had a blog about my experience, said too much and mentioned names, made some disparaging remarks (which reflect the reality of my situation) and they then refused to see me as a private patient, only public, and told so all others doc that were involved in my case. Which, in this case, meant about all of the ones that deal with ANs in this country. So now, if I need one, I need to see them as a public patient which can mean a wait for a year or more, depending how urgent the case is. This said, if I needed to have anything else done, I'd scrape the funds together and go back to the US. No question. I'll tell you the details when we see you. :)
ReplyDeleteWow. Hard to believe that they can do that? Aren't doctors supposed to be all about saving lives and helping people? So much for the Hippocratic Oath - more like the hypercritical oath. I didn't realize that doctors had the option of accepting private patients. wow.
ReplyDeleteHere they do. If one is a private patient one can be dismissed by a doctor, apparently. I came back from the US after treatment, had an appointment, with the entire faculty of medicine as it turned out, which was just awful, said so on my blog, and they cancelled all future appointments with me. Of course, I agree with you, so much for the Hippocratic Oath! But, if that's the way things are with them, then I'd rather fly out to the US again if I had to!
ReplyDeleteGoing on 15 years and haven't needed another one...let's hope it is the same for you!!
ReplyDeleteHey Kay!
ReplyDeleteReally??? You haven't ever had to get a follow up MRI? Wow. My docs told me that I'd need one yearly for the first 5 and every 2 after that. My risk for regrowth is slightly greater since they left a little bit behind - maybe that is why.
Oh Debbi, that does JUST SUCK! I think I'm at a loss for words actually. Being you are from what sounds like a big area seems like there would be a lot of options, but gee it sure does show how much insurance plays a role on things. On the forum, isn't there a DR. Chen (?) from that area mentioned often?
ReplyDeleteAlso, I think above Kay may have meant 15 years, not another tumor or surgery. Not sure, but I hope she didn't mean not that long for MRI.???
Here's wishing you the best on this "new", but once again search. UGH!!
Denise (MI)
Hey Denise! Actually, I think I am going to continue to follow up with Dr Roland and just pay out of pocket. He already gave us a discounted rate for office visits and I've been seeing him pretty often for the facial follow up, so it makes sense to just have him read the yearly MRI for me. I just have to make sure that he can order it since he is not in my plan. The hospital and MRI facility is covered by Aetna, so I know I can get it covered - just a matter of who writes the scrip for it.
ReplyDeleteThere is a Dr Chen, but he's on the West Coast, I believe. There are actually a handful of teams in the greater NY area who do this surgery, so if push came to shove, I could find someone else. In fact, Wendysig's doc (Choe) is in my plan. But, since Roland already knows me and my history so well, I'd rather stay with him for now. Who wants to break in a new neurosurgeon, after all? :)
Denise was correct - I meant no regrowth. I had to get MRI's yearly for the first 5 years and that was all the Dr. said - I haven't even talked to him in over 10 years!! In fact, last I heard, he moved to the Denver area. I have had MRI's probably every 4-5 years since then - just for my peace of mind (ha, ha! - I don't have too many pieces left!) and because I am having weird headaches (that have been explained by my crazy life - like, say...2 babies in under 19 months and NO SLEEP!) about then!
ReplyDeleteOh, well, that's a relief! Meanwhile, it sounds like you guys are full-steam-ahead on the move to Houston!
ReplyDelete