Bertagnoli/questions answered/fees

[Tableone]

Hi Everyone:

I got the estimate from Bertagnoli for a two level lumbar ADR. Here's what they say:

"Prof. Bertagnoli has informed me, that you need a cost estimate for the indicated spine surgery. Enclosed please find the estimate of costs for the spine surgery. We would like to ask for a deposit of Euro 33.534,00 payable by wire transfer 3 weeks before admission."

This says cost "estimate", so I'm assuming they can add on any other costs they want after that. I'm also assuming this is non-refundable. Has anyone had surgery there recently, and if so, how much more did you owe? I'm worried that if I make the deposit, that I won't be able to afford the remaining amount...

Also, my situation is different because of previous Scoliosis surgeries...we know that the discs won't last as long as in other people because of this. Therefore, I have emailed his assistant doctor many times asking:
1: How are your other patients doing who have had Scoliosis surgery with ADR underneath their fusions? How long have their discs lasted?
2: Since we know it won't last forever in me, what do I do when they fail? Do I return to you for surgery, or get fused or what?

So far, they have not answered these questions...I called Germany three times in the middle of the night asking for his assistant doctor. The first time they told me she was with a patient and to call back in thirty minutes. Then, when I did that, they told me to call back at 2:00 PM their time. When I did that they told me she had gone home for the day. So, three calls and no success. I am getting concerned that they are avoiding these questions, which I do not think are unreasonable, given my situation.

If you have any recent experience with them, please let me know.

Thanks,
T1

[vnf]

Need to remove for personal reasons

[Tableone]

I had NO idea he owned part of ProDisc. This puts a whole new spin on things for me. Shoot, I was thinking I would go there...

Who else is a good surgeon to go to in Germany? I have a special case and need someone with a lot of experience.

You know, years ago I had eye surgery in the Filipines because it was cheaper. But, I could always reach someone on the phone, both before and after and all my questions were answered by email.

I do not think my questions to Bertagnoli are unreasonable given my situation. they have said they had patients that had had Scoliosis surgery before...so, I just want to know how those patients are doing. But, they won't answer me. I wonder why?

[Maria]

Back when I was considering ADR at 2-3 levels I got the best responses from Bertagnoli's and assistant. I don't think I would really care about his investment in Pro disc as so many surgeons here in the US have the same thing going on. Not to say it's ideal but the question is what kind of surgeon is he and can he do the work. Yes I do agree with the part about getting responses prior to surgery because if I can't have good communication during the "courtship" or before I pay what about after I'm all paid up with probs on the side if they're happening or occur and generally I think if one is able to put more $ on the table and there is another surgical need or option the response will be there. That's business.

I personally think what Zeegers is asking for the consultation is quite worth it if you'd go back and read something that Victoria wrote re the consultation and Vicki replied to... sounded like quite a good deal for all the work that Dr.Zeegers will put into his consultation. Not to mention he seems to have quite a reputation as a Spine Master.

You aren't going to get guarantees regarding the outcome and what next or so I think though you should be able to get some "possible scenarios" .. no one can tell how long anything will last in your case exactly only what is known about the product itself to date or how it's supposed to function, last etc.

You are a complicated case is what I would say but not the only one with this situation. I imagine it's more common than you think and I also imagine that many people are fused all the way down to the sacrum at least before ADR technology came into play here in the US and probably even after because surgeons were being cautious picking only the best candidates for ADRs in maybe in the first 10 years or so or at least so I think. I could be very wrong about that however I sort of doubt it as surgeons in the US are really concerned with liability issues/lawsuits etc and I think it might be difficult to bring about a suit against a surgeon out of the country for anything less than a major mind blowing screw up re some surgical occurrence ...

Maybe lack of response on the part of the surgeon is because he has not had good follow up with these patients for whatever reason so he doesn't know how they are doing only how they did post op. Maybe he's got to have someone gather the information so the response time is taking a while. Maybe no response is a response if you know what I mean. I think I'd give it a bit of time as I imagine he's a busy surgeon so perhaps he or the assistant will get back to you in a certain amount of time. That may not be acceptable to you and may encourage you to make other decisions.

Take all this into consideration. You have a lot of hardware in your spine so my advice is unless it's emergent take your time getting your opinions and making your decisions.

re a US surgeon following you post European spine surgery with your degree of hardware might be difficult to find if not impossible however maybe not. I'd maybe check that out too in the "what if" realm although I don't know that anyone would answer that hypothetical a question at this point and even if they did if it would mean anything at the point you might need more surgery.

If you have insurance that you might want to use for surgery here in the US after having the surgery in Europe that's another question as to what might be covered or might be denied. Again it may be difficult or impossible to know.

So to me it would seem logical to go with the things that a specialist can and will answer and make your decisions from there.

[vnf]

Need to remove for personal reasons

[Tableone]

Thanks so much to both Vicki and Maria for putting such time into giving me so much info! I really appreciate it. Also, thanks for the articles which were helpful.

I've done a year of research on ADR below Scoliosis fusions and the authors of the two articles that have been written on this looked at my images. One is in England and the other in New York and they think it is viable on me. This surgery is done in Europe for people like me. It has only been done a few times in the States. I am just getting the tests done and then they will give me their price. Yes, the conventional literature states that any deformity disqualifies you from ADR. But, this is only the conventional USA opinion.

What I'm struggling with now is where to have the surgery. I don't think I can afford a US surgery. I have MediCare and they will not cover it. From what I understand, if I have the surgery in Europe no one here will want to do my revision afterwards...on the other hand, I'm probably disqualified from a revision anyway and will have to be fused when it breaks down, so maybe it doesn't matter where I have it done as most surgeons will fuse you?

I don't need another opinion now, so I don't want to spend a months rent on Zeeger, although I will search this forum to see if he also does surgery on people. What I need is a surgeon. There must be others in Europe, so I will look around. If anybody knows any other surgeons overseas, please let me know. I wrote to one in India but he told me there were no expert ADR surgeons in India. I thought this was honest of him, as his website said that he did ADR.

[vnf]

Need to remove for personal reasons

[Tableone]

Hi Vicki:

Thanks again for all this info. The reason why I want to avoid being fused to the sacrum is because I already have almost my entire spine fused. I cannot express what this is like...how awful and limiting this is. If I was just a regular patient who had not had my spine already totally fused, I would consider getting a few levels fused and I wouldn't care.

[Maria]

L5S1 if fused or not doesn't have much motion anyway.. so this is the level that I believe if fused would be Ok and ADR above it might work IF you are a candidate... that's sort of what I was facing .. a hybrid surgery.

Ok here's the other thing.. you don't want to waste a month's rent on another opinion re Zeegers.. he is a master spine surgeon from what I read... so if you pay to get his opinion and he gives you either what you want to hear which is what it seems like you are after really.. or maybe not depending on if he thinks you're a viable candidate as Vicki pretty much says.. you're still getting an EXPERT opinion! The cost is INVALUABLE from what I'm reading with regard to the time he spends going over things and giving you his expert opinion.

You are looking for a surgeon .. well IMHO you must realize you may not hear what you want to hear however you might hear what would be best for you with regard to putting all the pieces of the puzzle together.

You may or may not be a candidate for ADR at the last two lumbar level and you may or may not do well however it would at least be nice to find a surgeon that might answer your questions and perhaps if you pay the $1100 to Zeegers that's what you'll get.

I just hate to see you make a less than well informed decision because you don't want to spend another $1100 which in the grand scheme of things is very little.

Wishing you the best and I do hope you'll consider Zeegers amongst whomever else you're considering getting opinions from.

[Tableone]

I just wanted to let everyone know that Dr. Bertagnoli's assistant doctor did email me back, it just took her a while. They did answer my questions with good, direct answers.

Thank you for all the info everyone has supplied.

[Maria]

Hi T1
Good to read you got a reply back with direct answers to your questions. That must have made you feel so much better! Hope it helps you in your decision making as well. As always wishing you the best with your ongoing spine endeavors. Lots of input to contemplate and decisions to make I would imagine

[fuzzy]

One comment I like to add is that the Bertagnoli team ProSpine made me a bill that was a all inclusive price with out detail to exactly what was done and for how much. This was a big problem for my insurance and they paid non.

When I had the Zeegers surgery they detailed out by German standards exactly what was done and had codes for everything and that got me most but not all paid!

Bertagnoli refused to give me a detailed bill, German style. This was disappointing and a little bit dubious to me and it cost me money. In restrospect I regretted not having the c spine surgery with Zeegers who, at the time, was between hospitals.