Need multiple cervical disc replacement

[Scygan]

Hi, I live in Chicago and have BCBSIL. have been through 2 appeals already and keep getting denied for my disc replacement surgery. Have 3 herniated discs with 2 pinching the nerve and causing constant pain and damage. Doing as much research as possible to get the surgery I need

[EdSpine]

Hi, I live in Chicago and have BCBSIL. have been through 2 appeals already and keep getting denied for my disc replacement surgery. Have 3 herniated discs with 2 pinching the nerve and causing constant pain and damage. Doing as much research as possible to get the surgery I need

Hello friend !!! I have exactly the same story as you - c56&7 herniated discs w/ severe pain in right arm/fingers. Doctor seems stuck on fusion and I refused. His reply was "You will know when its time"
I believe there must be a better route. Stay in touch - I also have BCBS IL and have great interest in alternative surgery (ADR) My story is just unfolding and I am trying to learn as much as possible as I am not willing to go with fusion AT ALL ! However - It would seem my choices are limited unless I go overseas. Also doubt BCBS would be willing to pay for that. Ed

[Scygan]

Hi Ed!!! I'm still fighting with the insurance company as my discomfort level increases and the pain is constant. Really don't want to do the fusion, the disc reps cement is my best option and I'm trying to hold out as long ad poosible to get the insurance to approve it. I need to find some approval letters, hoping it helps

[spinches]

Hi to both of you. I have issues at C 5-7 and have been researching my problems and potential solutions since February. I haven't considered approaching my insurance company as I have an "individual policy," which means lousy coverage and constant battles to get anything paid for. I got four opinions from local surgeons, but three of them didn't want to do anything for me until I get a lot worse. One wants to do a one-level ADR at a surgery center, paid out-of-pocket at about $23,000 (includes surgeon, anesthesiologist, AD, and facility fee). The surgery center's part of this total fee includes the AD and a couple hours stay at the facility. The surgeon told me that the same procedure performed at a local hospital would be about $27,500. If you need more than one AD, the cost goes up of course, especially for the price of the devices.

I think I am like a lot of people in that I postponed talking to the overseas surgeons until I felt I had exhausted the local options. Now that I have consulted with a couple of them (Bertagnoli and Boeree) I am amazed at how helpful they were, and wish I had talked to them sooner. The surgeons outside the U.S. are a lot more comfortable and experienced with multi-level ADR than are most of the domestic surgeons I consulted. Their opinions might not have any effect on your insurance company, but might help you clarify your own decisions. They certainly helped clarify mine!

Good luck to both of you. Sandra

[Cindylou]

Very good advice Sandra. Cindylou

[Katie]

I agree with CindyLou I struggled for almost five years with insurance, only to fail miserably. In the end, we cashed in our retirement funds and went to Brazil to Dr. Luiz Pimenta, which was much cheaper than going to Germany or NYC. I wish I had done it several years earlier and gotten my life back much sooner.

With really low interest rates, we were able to remortgage and replace much of our savings, so it has been a win/win situation. As a side note, Dr. Pimenta ended up doing just one level in my neck, when every other big name surgeon recommended two levels. So far, so good. The neurological problems that were supposed to be permanent have almost completely disappeared with just the C5/6 being replaced with the NuVasive NeoDisc. I am very happy with the results.

[spinches]

Katie, that is wonderful that your neurological symptoms have reversed to such an extent! It is very encouraging also to hear that Dr. Pimenta's choice of surgery and disc have worked well for you! Doing a lot of research, then choosing a reputable, EXPERIENCED surgeon and going with that doctor's recommendations, feels like a really good strategy to me.

I think that the context in which the surgeon practices makes a difference in his or her recommendations, however. In two of my consults with local surgeons we spent a lot of time talking about whether ADR is safe to use with anyone, and the prospect of ADR at two cervical levels seemed to cause strong feelings of uncertainty or even fear in the surgeons' minds. These two surgeons seemed genuinely concerned about my well-being, but their fears about ADR were speculative, as in "I would be afraid that ADR at both levels 5-6 and 6-7 would not provide a stable base if you need further surgery in the future at C 4-5." The surgeons I consulted who had performed many multi-level surgeries, including hybrid surgeries (ADR and fusion), told me that their experience made them feel confident about the stability of multi-level ADR's. One of them also observed that in the U.S. the surgeons are "not allowed to do that" (because of lack of FDA approval) and this affects their clinical opinions. This makes sense to me. These contextual factors in the U.S., i.e., lack of approval from surgeons' academic and governmental authority figures, and lack of approval from the insurance industry, play on surgeons' natural fears about medical procedures that are new to them. They cannot put to these fears to rest with the evidence of their own clinical experience, because they don't have enough of it yet.

The end result is that the local doctors I consulted seem to have had some difficulty focusing on what was needed in my individual medical situation. They were distracted by the more general controversy in this country about ADR's versus fusions. I see a parallel debate among the international surgeons regarding things like which disc is superior to the others they can use. All the uncertainties come up again at that choice point, but at least it is a more advanced point on the road to medical progress! I have been fearful about choice of AD, but have decided they each have their strengths and weaknesses, some of which we can't even predict at this point, and even the ones God gave me obviously aren't perfect!

So I would recommend to people who are starting to consult surgeons that you try to discern whether the doctor's advice is about your individual clinical circumstances, as opposed to a more general "position" regarding ADR, a particular disc, or whatever. At my fourth consult, I had gotten to the place where I knew enough to ask the question directly, "Are you saying this because it is your general belief, or are you saying this because of something about my particular medical situation?" The surgeon became rather defensive, but then told me what he really thought, which was a general fear about the use of ADR, and although his fear was reasonable, it was based on speculation and not on experience.

[Katie]

Sandra, you are SPOT ON!!!!!! Good on you for understanding the differences and pressing the surgeons on it. Even after my success, I ran into an ER doctor a few weeks ago who expressed grave concerns about any ADRs, saying they haven't been proven yet. My case was an exception, of course .

Even though I didn't have the funds to go to some of the out-of-country surgeons, including those in the US (I'm in Canada), I continued to send my images to those who were considered the best in the world. I got a great deal of expert feedback, and made my decision on surgery based on their opinions, not on those who had little to none here at home. They were also influenced by gov't insurance funding...if they buck the system, they lose their livelihood...JMHO of course, backed up by candid conversations with physicians who had tried and suffered consequences. Money is the root of so much evil...but I digress...

Keep up the great work

[spinches]

Thank you Katie and Cindylou for your positive responses to my post. I have been working really hard for several months to understand my medical situation and potential solutions to it, and for most of that time felt like I was looking for answers and being offered clouds instead. It is a good feeling to be finally reaching what seem like the best decisions I can make for myself, given the state of the art and science of spine medicine. Thanks for supporting my thinking.

For the people who are even more new than I am to this journey, I want to share a couple more experiences I have had with local surgeons. One of the doctors started out by telling me he would want to fuse my cervical spine at two levels. When I told him I wanted to consider ADR instead, he told me that "all that has stopped" after some "recent articles" showed ADR was "no better than fusion." He clarified that what he meant was that insurance companies have intensified their resistance to paying for ADR, based on these articles published in spine journals. That was the end of the discussion about ADR's, as far as he was concerned. I was already having emotional difficulties with the consult, because this doctor had given me the worst interpretation of my MRI any of the doctors has offered before or since. I didn't feel confident enough at the time to tell him that I wanted his opinion about the treatment of choice for me, not just the one that insurance would pay for. It might not have mattered to this particular surgeon, as I later found out he "likes fusion," but if I were seeing him now, I would speak sooner and more directly about financing.

The fourth local surgeon I consulted thought I should have a foramenotomy to relieve my radiculopathy symptoms and not do anything about the spinal stenosis until I had myelopathy. He expressed a number of objections to ADR, on the grounds that I don't need it yet, and on some more general objections he has to ADR. At the very end of the consult he tossed out in a casual way that he has decreased recommendations for ADR because insurance won't pay for it. I told him that I would find a way to pay for it myself if it was the treatment of choice. His eyes widened, he looked stunned with surprise, and he said "Oh."

I am a health care provider myself, and I understand how insurance companies influence not only what doctors recommend to patients, but even what doctors are able to think about what is the treatment of choice for an individual. Most U.S. physicians have little or no experience even with providing cost estimates for surgical patients who want to consider paying out-of-pocket. I don't know if it is a good idea to tell a surgeon that you are considering going to another country for surgery, but it might be helpful to tell them early in the interview that you don't want to restrict the discussion to what is approvable by your insurance company. I would be very interested in hearing from other members about what they have encountered when they tried this approach.

[Katie]

I don't know if it is a good idea to tell a surgeon that you are considering going to another country for surgery, but it might be helpful to tell them early in the interview that you don't want to restrict the discussion to what is approvable by your insurance company.

Unfortunately Sandra, what it got me was blacklisted, or the threat of it at least. My main care neurologist told me that if I went out of country that no one here would want to touch me for after care. When I point blank asked if I would be refused treatment of any kind, he said well, no...they couldn't do that...but don't expect anyone to be quick or enthusiastic about the care.

Since it can take up to a year to get an appointment with any kind of specialist here, I can only imagine the wait unless it was an emergency. Many other surgeons are not keen on taking on someone else's 'mess', as they see it, if anything does go awry. I gave up talking about it, and am even careful to say that I have had it done at all unless it affects my overall care. I hope you have better reception...maybe it is getting better with time.