Health Insurance Denial Forcing Me to Go Abroad...

[skmcpher]

...not that I mind traveling, mind you, but i would much prefer to have my neurosurgeon here perform a cervical ADR on me, instead of having to go out of the country to a new doctor. However, since my health insurer won't pay for the procedure and I can't afford to have it done here paying out of pocket, I am left with no choice as I can't continue to "live" with the pain. I put live in quotes because I don't exactly consider being drugged up, unable to work, and spending most of my time in a recliner in front of the TV living. I'm sure many of you on this forum know exactly what I mean!

My troubles started at the end of May, 2009, when I was rear-ended in a car accident. I had had a fusion at C5-6 back in April, 2002 after a car accident the year before, but I had been pain-free since the end of 2003. All the symptoms I began suffering (burning pain, numbness, tingling, muscle weakness, etc.) I had experienced before my ACDF but no matter which doctor I went to in the first 6 months or so after the accident, they all just wanted to send me to physical therapy instead of figuring out why I was in so much pain. I finally found a doctor who actually wanted to treat the cause of the problem, and after several different diagnostic tests, C6-7 turned out to be the cause of my problems. My neuro recommended ADR at that level but my insurance would not approve the procedure as they consider it experimental. Because I was in so much pain I elected to have ACDF at that level in the hopes that I'd feel better, so I had the surgery in February of 2010. Unfortunately, though, the surgery didn't help my pain at all, and I actually started feeling worse. Physical therapy and pain injections did no good so more testing last summer revealed that C4-5 was now causing my problems. In August my neuro recommended ADR at that level, but again my insurance denied it. This time ACDF was not an alternative, because my neuro firmly believes that having three levels fused at my age (early 40's) is a really bad idea, and not only is C4-5 in bad shape, but C3-4 is torn as well, so having a fusion could cause that disc to fail in the near future. So I spent the next 5 months fighting the issue with my health insurer and the State department of insurance, to no avail. Now I am looking into having the surgery done outside the U.S. because I can't afford to pay for it out of pocket here.

I have been in contact with Drs. Bertagnoli and Clavel, and after having reviewed my images and reports, they are recommeding ADR at both C3-4 and 4-5. I am awaiting a recommendation from a doctor in India and one in Singapore. At this point I am leaning towards Dr. Clavel because I like the design of the M6, which he will use, and the surgery will be less costly with him than with Dr. Bertagnoli in Germany. I expect that the cost in India will be less than half of the cost with Dr. Clavel, but I've been told I can't get the M6 there.

I hope to have the procedure done in the next couple of months, but I'm finding the process a little intimidating. Any input anyone can provide would be greatly appreciated. Thanks for reading!

[Justin]

Hi skmcpher,

Welcome to the Spine Patient Society.

I'm glad you've found us. I can empathize that the process can be "intimidating" -- I do hope we can help support you.

My two cents: go with your gut. I know price is a HUGE factor in regard to spine surgery overseas. However, this is not the time to base things on price (I know easier said then done). I would suggest that you look at all of you options and pick the one that makes the most "sense" to you and with the surgeon you feel the most comfortable with. At the end of the day, this is your spine and you really only want to have the least amount of surgeries as possible (I would say only one surgery, but you've already had spine surgery ... you know what I'm saying.).

Think about who you would go to if price didn't matter. An easy way to do "weigh" your options is to get a spreadsheet for each option and try and list as many "pros" and "cons" as you can for each option. I know this sounds really basic, but sometimes something as simple as this can really get you to that next step.

How do your facets look in your cervical spine? Have you had any diagnostic injections to "work them up?"

Feel free to send SPS Members private messages if you see a success story that peaks your interest or if a Member visited a clinic you have questions about, etc. The network of Spine Patients we have here is incredible; plus, they are always willing to lend a hand.

Once again, welcome and please don't hesitate to contact me if you need anything.

[Katie]

You will be in good company. A great number of us here have had to go out of country for similar reasons. Mine was a bit more complicated, but I can tell you that the surgeon I ended up going to (Dr. Luiz Pimenta in Brazil) was top notch, one of the best in the world, and his prices were less than anyone else's other than the surgeons I spoke to in India. But that's not the only reason I went to him.

Sometimes the German and other surgeons arrange accommodations that are included in their price, so it is hard to break down the exact cost. Dr. Pimenta's price is for his services and the hospital costs. You are on your own for hotels, etc. but there are several people on here that can help with advice on that.

As Justin said, trust your gut. There are a number of great surgeons out there. I'm sorry for your circumstances that brought you here, but you will not find a better place for support and advice from those who have been there, done that.

[Jack-of-all-trades]

skmcpher,

I can sympathize with your predicament. My neurosurgeon in the US would not recommend fusion or disc replacement as 5 of the 7 C-spine levels are diseased. Insurance will not approve multi-level disc replacement in the USA. He said I should go to pain management until I was willing to get my entire C-spine fused. I'm like you, opiates are a pain. I will admit to taking a 5-325 Vicodin maybe at most twice a week in the PM but that is my personal limit. When I was on steroids for MS I didn't take any opiates for nearly two months. There are so many things that can cause pain it is quite confusing. For me, multiple sclerosis vs DDD.

If you can get by with only one level for now there is a person who is kind of an advocate for spine people who might provide you with enough ammo to get it approved. I don't remember her name but as I recall she is known as "The Insurance Warrior". Someone else might know.

Can you get a doc to follow you post-op when you get back?

[Cindylou]

Laurie Todd, I believe is her name....The Insurance Warrior. Cindylou

[skmcpher]

Thanks for all your posts, everyone.

Jack of all trades, I think I am beyond help with the insurance process at this point since I took my appeal all the way up to the State Department of Insurance and lost. The opinion of the "Three Stooges" (otherwise known as the three supposed doctors who reviewed my case) was that first of all, I was simply having intractable neck pain without radiculopathy (which is totally incorrect) so I wasn't even a candidate for ADR; and, secondly, ADR on the cervical spine is too new without enough long-term proof of its success, and thus correctly considered experimental. Before I submitted all my appeals I read through a lot of Laurie Todd's advice posted on this board and others, and really did my homework. My appeals were about 25 pages long and I referenced every cervical ADR study I could find plus attacked my insurance company's Coverage Policy for deliberately omitting promising cervical ADR studies that had been published well before the date of the Coverage Policy, but to no avail. My insurance simply will not pay for me to have cervical ADR here, whether it's at one level or five. Experimental, therefore not covered. Period.

I am curious, though, if anybody ever exhausted their appeals like I did for a cervical ADR, then went abroad for the surgery, and then got their insurance to cover it.

My neurosurgeon here has told me that he will be happy to continue to treat me after I go abroad to have the ADR surgery. He has actually encouraged me to look into surgery in Singapore because of the reputation there and he also feels India is an excellent choice.

Thanks again for everyone's posts. It's a great comfort to know that I am not alone.

[Katie]

My neurosurgeon here has told me that he will be happy to continue to treat me after I go abroad to have the ADR surgery. He has actually encouraged me to look into surgery in Singapore because of the reputation there and he also feels India is an excellent choice.

Wow, do you know how lucky you are to have such a support system at home? Several others here in Canada, myself included, were told in no uncertain terms that they (surgeons) would not treat me or do any follow up care if I went out of country (unless I was dying and they would be forced to do something).

There was a story on the National news a few weeks ago about a fellow who traveled out of country for the new Zamboni treatment for MS. He had a similar but not identical procedure done than what the Italian surgeon recommended...a widening of the veins in the neck to allow for increased blood flow.

He developed a blood clot when he got home and went to his local hospital several times but they did not treat him properly, if at all. From what I understand, he was not given any medication to break up the clot. He ended up flying back to the country where he originally had the surgery, but by then the clot was much worse and he died. Totally unnecessary in my opinion, and egos got in the way. I am pleased to hear that your surgeon has your best interests at heart.

I am still working on getting private insurance, rather than our gov't health insurance, to cover part of my costs. I've exhausted the public insurance appeals. Good luck, very sincerely.

[skmcpher]

I really do believe that my neurosurgeon has my best interests at heart. I had gone to get a second opinion and my husband urged me not to tell my neurosurgeon, but I wanted to talk to my neuro about what the other doctor said because I was totally confused. I felt that a doctor who is truly reputable would not have any issue with a patient getting another opinion. The second doctor had told me that the fusion at C6-7 that my neuro had done had failed (based on MRI images from last summer) and that I needed a revision surgery at that level and that fusing C4-5 was also a good idea and there was no risk of further degeneration. This was the complete opposite of everything my neuro had said, and since we hadn't had any images taken of my spine since last summer, my neuro ordered a new CT.

I went to see my neuro after the CT and he assured me that C6-7 had fused and reiterated his concerns about a third level fusion. He said that unfortunately some spine surgeons out there will do anything they can to get a new patient into the OR so they can make money, and then when the patient tells the doctor that he's still in pain, the doctor then tells the patient, "Well, I never guaranteed the surgery would relieve your pain" and then refers them to a pain management doctor. He didn't say every doctor does that, but what he said really seemed to apply to the second doctor I saw. I would have thought that if this new doctor was so concerned that I needed a revision, he would order new films first just to confirm.

My neuro seems genuinely frustrated that my insurance will not approve the ADR and he simply will not do a fusion at C4-5 because he does not feel that it is a viable alternative. He knows that I'm at the mercy of my stupid insurance company, and since they won't pay for the ADR, there is nothing my neuro can do for me. That's why he's encouraging me to go abroad for the surgery.

I have heard good things about healthcare in Canada, some good and some bad, but I don't think your system is as bad as ours is here in the U.S. I simply cannot believe that we have let our system become one where insurance companies, not the treating doctors, decide what care a patient gets. I feel very fortunate that I have a doctor on my side but I also feel trapped because I can't get the care I need.

[Katie]

I have heard good things about healthcare in Canada, some good and some bad, but I don't think your system is as bad as ours is here in the U.S. I simply cannot believe that we have let our system become one where insurance companies, not the treating doctors, decide what care a patient gets. I feel very fortunate that I have a doctor on my side but I also feel trapped because I can't get the care I need.

Unfortunately, when it come to spine surgery (or any medical treatment), our government acts as the 'insurance company' here in Canada. For whatever reason, they do NOT want to fund the latest spine surgery/research. When it comes to heart surgery or cancer, we are one of the very best, but not with spines.

The surgeons can not push against the government who pays them any more than yours win against your insurance companies. I proved that ADR surgery is listed in the Medical system's list of approved/covered procedures. There are several codes for it. But when I pushed, I was told it was still experimental. I've fought for years, without success. There are surgeons in other provinces that are ahead of their time and doing it, but not here. If I could have gotten any surgeon in my province to recommend surgery that could not be done here for several reasons, I could have had my out of country surgery paid for, but not one single doctor would do it. So I had to do it on my own.

I really feel your frustration.

[JPJH]

I had my 2 level ADR using the M-6 this past October with Dr. Clavel. He is an excellent choice and Barcelona is a great place to be. My wife and I opted to rent an apartment for the two weeks we were there. It was close to the hospital (which is a very nice and modern by the way) and also close to all the action in Barcelona. I set it up myself and Dr. Clavel just deducted the cost of the hotel they would normally set up out of the charges. The apartment (2 bdr. rm. 2 bath) was actually cheaper than the hotel. If you think you are interested send me a message and I will get you their contact information.

JPJH