Frustration

[JoJo]

I know you all know what I mean when I say how frustrated I am.

I just don't know what to do anymore. My surgeon says that I am a ADR candidate. He participated in the FDA study, and has plenty of experience with the surgery.

I appealed to my insurance company twice, and then took it to the Insurance department of my state. They have an ombidsman program, and it was sent there.

There is a panel of 3 doctors who "decide" if you can have the surgery or not. They decide this based on info sent to them by my doctor. One of the the panel doctors said yes, the other two said no. So, they will not pay.

It is obvious from the notes of the two who said no that my doctor didn't send enough info. I am thoroughly fed up with him, and his office staff. I would like the denial explained to me, but the first available appointment he has is NEXT NOVEMBER. I am an established patient, and he can't see me until then. It's ridiculous.

I have a few questions for those of you who went ahead and paid for it yourself. What happens if I pay for it, and complications arise in the hospital? I am there without the sanction of my insurance company. Would they then pay the expense arising from the complications, even if they won't pay for the surgery itself? Those of you who went to Europe, what did you do about this potential problem?

Also, is there a directory someplace of doctors who excell at spine problems? I live in Western New York area, and have no idea even where to begin to find a new doctor. I am soooo fed up with the one I have, I can't begin to tell you.

Thanks so much for any help you may give me.

[Alastair]

Hi JoJo,
well as ever, I point you to the FAQs for doctors who do spine surgery in the USA and for doctors who do spine surgery in Europe.

The European doctors keep you across their for two weeks after your surgery and give you checkups to ensure that things are okay. There are certain doctors in the USA who will do the follow-up USA doctors and are mentioned on here at this time. I think Dr Yue is the one for Dr Bertagnoli .

I can understand your frustration
Best,
Alastair

[Rein]

JoJo

Sorry for your frustration. Yes, we've all been there, but there are things you can do yourself which will help to relieve that frustration.

First of all, ditto Alastair's remarks. If you go to our FAQ's and make yourself familiar with what's in there to start with then you'll know where to go when you have specific queries. Second, use our search engine! It really works (most of the time) and will come up with much valuable information. The key is this: if you put in the time here to research on your own then you're being proactive on your own behalf, learning and defeating that frustration that comes from a sense of helplessness. The more you read and educate yourself about your body and your condition, the more empowered you become and the better chance you stand of getting the help you need.

Now, on the surgeon front - whether the surgeon you consulted was part of a study or not, if he isn't scheduling you in a timely manner then obviously he doesn't have the time for you and you need to cut your losses and move on. Many members here have consulted 6 or more surgeons and specialists (for a variety of reasons) over the course of their spiney history in order to finally locate that one person who is knowledgeable, makes sense in terms of your own particular case and is responsive to your needs in terms of listening to you and giving you what you need. What you need right now (it seems to me) is an immediate workup by a surgeon who will submit as much documentation as is necessary to satisfy your insurance company. If the appeals board is stating that documentation of your case is coming up short, then you've got to take the bull by the horns and advocate for yourself! Let that surgeon know in no uncertain terms that his interaction with you is below what you will accept and you either need better service from him or you'll move on.

We're not into doctor/facility bashing here, but naming names isn't bashing, it's reporting. That goes for insurance companies also. If you give us specific details you stand a better chance of evoking a response from someone else who may have a similar experience and has a specific remedy. We all desire to be informed (that's why we came here, after all!) and if you've got the name of an FDA study surgeon who hasn't got the time for his own patients, then we want to know about it! (Well, I do!) ;-)

[BRENDAWY]

JOJO, i TOO HAD A SURGEON WHO DIDNT HAVE TIME FOR ME. HE COULDNT EVEN CALL ME ON THE PHONE. IT TOOK ME MONTHS TO CUT HIM LOOSE, PARTLY BECAUSE NO OTHER OFFICE WOULD SEE ME WITHOUT A REFERAL. I FINALLY FOUND ONE THAT IS 4 HOURS AWAY. IT IS AN INCONVENIENCE AND KICKS MY BUT TO GET THERE AND BACK. IT IS WORTH IT BECAUSE HE IS WILLING TO FIGHT FOR ME. I HAVE ONLY HAD ONE APPT. BUT HE CALLED ME PERSONALLY THE NEXT DAY. I WAS SHOCKED.
KEEP SEARCHING. DONT GIVE UP. TRY AGAIN. BRENDAWY

[JoJo]

I am not sure how this works.....when I reply, does it go to everyone who responded to my original post? I would like to respond to each of you, but how do I do that?

Anyway, Alastair, thank you for reminding me about the FAQ's. I read them once, but I obviously need to revisit that area.

Rein-I believe that I have played my last card with the insurance company. I have UNIVERA healthcare insurance. My appeal went out to a ombudsman, and it went to a panel of surgeons. One of the surgeons said yes, the other two said no, and both commented that some of the info was missing. Like the height of my disc space, stuff like that. One of them also thought that I should try injections, which I have had, and so, obviously, the surgeon failed to mention that. I did call my PCP today, and he is getting me a referal to someone new. My problem is that we live in a very rural area, and there are very few (if any) other doctors around who do this procedure. Especially with the health insurance I have. I can't, for instance, go to Pittsburgh or New York City and have the insurance company pay for it.

And finally, Brendawy, thank you for the encouragment. It is nice to know I'm not alone.

[Rein]

I don't know about other insurance companies, but Blue Cross allows the insured to change policy types once per year. If your policy type doesn't allow you to go out of state maybe you could switch (next time it comes up) to one that does.

My wife and I decided, at the time she started a new job with new insurance, which type of policy would give us the best chance of getting what I needed when the time came for surgery. We reviewed our options again a couple months ago with the same things in mind and decided to keep it the same. We're still hoping that our decision was the best one, but sometimes you just have to roll the dice...

At some point your spine situation may very well come to rule your life (unfortunately!) and deciding to change how you view it and how you deal with it is a big transition for all of us, but something we all have gone through. Eventually, we all get to a point where we realize that this disabling disease is costing us more, in terms of life quality, how it affects our family and friends and work, the constant pain, etc., than we are willing to accept. At that point most of us have decided to do whatever it takes to get fixed. For some it means borrowing, mortgaging or selling. For some it means researching the heck out of all available options to finally locate one that will afford us a new disc, whether we think that particular disc is the best one or not. For some it means settling for fusion and at least a semblance of life once again, even if not our ideal solution. For some it means pestering surgeons, insurance executives (yay, Rich!!!) or whoever we have to pester to finally get some action on our behalf. Each of us has to make that choice for ourselves, based on our own situation and what we are capable of dealing with and/or obtaining.

Read, research, learn. Eventually most people here (who are successful) have determined what combination will bring them to the day when they get up out of a hospital bed with a new disc and no old pain and only have to deal with recovery and getting on with their lives. We all wish that for you and for each other since we're all in (or getting out of) that boat ourselves and know what it's like.