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Sandy123 01-23-2008 02:26 PM

Hi all, I’m so happy to see this ADR site up!!! I went to the scoliosis site a few years ago & recently, and although they are very intelligent on fusions they sure do not push for the ADR’s because their doctors tell them they are not candidates for ADR’s because of their previous fusions but I refuse to accept that! And I was right, I did send my x-rays to Germany & they did approve me for 2 ADR’s even though I still have a curve & 13 fused discs. I also met a woman (on a different pain site) who went to Germany 5 years ago, with the same problems & she is now a proud owner of 2 ADR’s and has a real happy pain free & mobile life now. I sure don’t want any more screws in me and even be stiffer than I am now. After all, I won’t be doing flips & cartwheels any longer. I also watch the research channel on TV and the top surgeons are still talking fusions mostly, WHY??? I think that part of our problem getting ADR’s in the U.S. is the top important, surgeons are dragging their feet. That is why I’m so happy to all the people here spreading the word of how happy they are with their ADR’s. My big problem now is getting the money together to go to Germany. I have my IRA with 3/4th of it and will take out a loan for the rest. I’m pretty sure my insurance (United) will not approve me but I will try. I have a question though. Should I go see my local orthopedist & get x-rays and of course he will tell me I need 2 be fused on my bottom 2 discs, which he told me 6 years ago. And I know my insurance will pay for x-rays. So, do I tell my orthopedist that I only want the x-rays to send to Germany (and I bet you a dollar he won’t agree with me). I had seen a neurologist a few years back & he told me, oh no, he would not recommend ADR’s, it’s just a new thing not proven yet. Any way, then do I just go to Germany and have them try & get the insurance to pay? Do I tell my orthopedist who I know doesn’t do ADR & will probably try & talk me out of it? I also hope I’m still a candidate for Germany; it would be terrible if I waited too long. How do I handle this? Any one know how to handle this? And thanks to all you brave people who have went before me!!!

KL Aguilar 01-23-2008 03:19 PM

I don't know the answers to your questions, but before you plan on going to Germany, I would strongly recommend that you read other posts on this site about Stenum. There was one group of ten Americans who were all operated on at the same time, and about half of them had disastrous results, including one person who almost died and another who committed suicide. I have no experience with them, but continue to read negative things about them. The best in the world seem to be Dr. Bertagnoli and Dr. Zeegers, who both operate in or near Munich. And since money is a consideration, there were a few recent posts about Dr. Zeegers being cheaper.

Sandy123 01-24-2008 05:53 PM

Thank you KL, I will do more studying. It's a good thing to learn as much as I can. I wonder what the person died from. Do you remember?

Terry 01-24-2008 08:08 PM

KL said one almost died and another committed suicide. I also heard from the person personally who went with this group of ten and the male who committed suicide did not get the pain relief he sought and committed suicide shortly after return to the States.

I went there for 4 level ADR over one year ago and believe I got good care. All surgeons will have good and bad outcomes. You take you with all of your humanness to the operating arena where anything can go wrong.

I was not in that person's life to judge the desperate pain they were in though I can say that it happened so soon after their return that I do not believe they gave the healing a chance to take place.

I can say without a doubt that there have been times in my life where I prayed to die as the pain was so great that I wanted God to take me out of the misery. I certainly understand this level of desperation.

I certainly do not feel this way today and live a normal life over a year since my ADR surgery.

I wish you luck with whatever decision you make concerning you future. There are many here who will support you on your journey.

Terry Newton

Sandy123 01-25-2008 06:32 PM

Thank you Terry so much, I really appreciate your words! I'm ready to take the plunge now and I'm serious this time around. Like I said I just hope I will still be approved or I will be crushed that I didn't do it sooner. Although if they say no, you know it's for a good reason.
I'm sorry to hear about the one who committed suicide, especially if he couldn't get enough pain meds. That's what keeps me still walking and moving. I have been researching Zeegers a lot and I'm probably going to go with him. I will post as it goes, and thank you! Guess what? Last night when I looked at the prices it said 19000 for a ADR and now this afternoon it went up to 20000, our dollar is still going down.
Question? When I have xray & a MRI. I'm pretty sure I can get the MRI on a CD. The xray I don't know. How do you send any thing by email or fax? xrays are very big! And a CD, I don't know how to load it into my computer. So can someone tell me how to do this? Thanks.

Terry 01-25-2008 10:37 PM

Most hospitals will give you your films and MRI's on CD-ROM Disks. Once it is put in the drive you can send an e-mail and then add the films as an attachment. If you are going overseas for your surgery they may have different readers for the films and may not be able to open your files. That is the problem when I had MRI's done in Germany. I tried to have them read when I got home but the physician could not open the files as the reader they use is different.

Terry Newton

chasswen 01-26-2008 05:46 AM

i send my cat scan and mri films on cd with built in viewer via usps global express 3 day service it was only 22.00 dollars.
and pro spine had no problem opening the cd.
zeeger's shouldnt as well.
chuck

Lisibug 01-26-2008 10:01 PM

Dr. Bertagnoli performed my ADR surgery and I was thrilled with the care there and with the results. However, I would feel good about going to Zeegers too - I believe they are the two best ADR docs in the world, too. However, I don't know where you live, but Rick Delamarter, in Santa Monica, CA, performs ADR surgeries and clinical trials. He is an outstanding spinal surgeon and I have not heard anything negative about anyone he has performed surgery one. He performed a 2 level ADR on a relative of mine 2-1/2 years ago and he is doing great. The reason I'm telling you this, is that he has a department wholly devoted to getting insurance companies to approve surgery with them. This may be a consideration for you. I wish you the best with whatever you choose and hope you will feel a lot better.

Sandy123 01-28-2008 05:15 PM

Thanks for telling me how to send the attachment, I think I can figure that out now.
I have been doing so much research lately and guess what? There are 2 doctors here in Colorado who do ADR. One is a co-inventor of the Mavrick disc. The other one I googled came up with a letter from the FDA questioning him about quite a few problems he had with his ADR trial/study patients. So I don't think I would go to him, plus I want someone more experienced. It was a serious letter and they weren't happy with him not reporting problems he had within 10 days & also including 2 patients who did not meet the requirements for an ADR. I would check out the U.S. doctors but I don't think any of them would approve me. Since I'm fused to L-4 and want the ADR for the bottom 2 discs, and also I have a med/small curve in the lumbar, so I don't think U.S. doctors will approve me. Are U.S. doctors even allowed to give ADR to someone that is fused?

snapoutofit 01-28-2008 05:20 PM

Hi Sandy,

I am going to Dr. B in a few weeks for a 2level ADR. The hospital gave me both the x-ray and the MRI on CD which I mailed to Germany. The first one arrived broken because I didn't package it carefully. Put it in an old plastic CD case. Dr. B's office received it within 5 days and had no trouble viewing it. I could not figure out how to get the information in a format to email.

I have found that my family doctor is extremely supportive of sending me for MRI's and X-rays maybe you can try that? He doesn't have an interest in losing my business to Germany. In fact he's seen a botched ADR surgery here and strongly recommends I go to the best. Even some of the neurosurgeons and the one who performed my diskogram have been pretty supportive of the decision to go there. The big issue though is that no one is willing to follow up with me when I return. But in talking with many of the success stories on this site, I'm just hoping to be one of them and not need any follow up. Scary stuff though.
I have UHC and have been denied initially. The phone rep says there may be a chance of getting the surgery for one level covered. I didn't feel that I had the choice to wait for those decisions due to the rapid progression of the disease. So at this point we have wired over $46K (that doesn't include airfare/hotel/food etc)and am hoping I have made the right decision. We have three young kids and this is no small amount of $$ to us.

Good luck in all of your decisions. It really is brutal.

Cheryl


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