Yesterday my Nurse Case Manager who has been so encouraging about the ADR trials all along and the surgery in general called. She said she had been looking at some Charite information and did I realize what problems there can be with implanting/inserting it at certain levels so I told her I was aware of this and she mentioned some of the studies that had drastic results..
She also asked if I was aware that the cage was much safer to insert than the disc.. we discussed this topic for a while..
She then went on to talk about having been a clinical coordinator and seeing how people in Clinical studies usually receive very good care and are very enthusiastic about the surgery so the stastistics might reflect this as in the studies with overall results there was only about a 5% difference in how ADR patients did over Fusion patients...
I couldn't believe what I was hearing.. so we talked about this topic altho when someone can pull that "clinical coordinator card" it's sort of like saying "I'm the one in the know re clinical studies".. Basically I talked about going to these spinal events, meeting persons with great results that had been in clinical studies and those that had been to Europe, reading about their results over the last few years and many more with successes than failures reporting back to the forum.
I've read for years at various spinal forums with people that have had multiple level fusions and overall reports have been rather grim. Many needed repeat surgeries for adjacent levels, and most are reporting more pain and limitations..
She mentioned the new Claims Manager who carries great weight with the company now who said she would be happy to discuss this whole debacle with me re turning down the offer for ADR surgery and she even said that I've only seen two surgeons that were involved in clinical trials so why don't I see someone she can refer me to as she knows a wide network of spine doctors.
Right here I know I'm being set up for failure. I told the NCM that I know a wide range of spine doctors also having practiced in this community as an RN,NP for 25 years and that I know someone who is very involved in working with physicians performing this surgery who aren't doing clinical trials. Not to mention with my own funds, I sought opinions from a reputable Los Angeles Spine Surgeon who is performing Charite ADR and that's out of clinical trials plus an opinion twice from a world renowned European Spine Surgeon who has trained spine surgeons here to perform this surgery and he has done as many as four and five lumbar level with good/excellent results.
She asked me to come up with studies that show that ADR at multiple levels have better markedly better outcomes than fusions or have markedly good outcomes.. but preferably when compared to multi level fusion.
She also asked me to get the name of the surgeons in the LA/CA area that are doing multiple level (two and three)ADR implants since I mentioned that this is being done at The Spine Center and by Dr.Regan) that I know of..
I told her I wasn't going to any surgeon that I didn't choose to see as I'm quite sure it's my right to request the surgeon that I want to see.
She said that what I needed to do was request to see the surgeon that I wanted to do the surgery, and then transfer of care could be made to this surgeon. However, if UR denies the ADR surgery, then I'm stuck traveling miles which I really can't do at this time to see someone who's hands are basically tied in terms of treatment and can only do a multi level fusion for me.
I told her that I will stay with my current OSS because even tho WC doesn't care, I have my SSD/LTD to consider and he is the person that signs off on that so that I can have an income while I'm unable to work because of disabling back condition. Not to mention this surgeon who has seen me since 1998 and had offered a 3 level global fusion was offering me fusion at L5S1 and then Charite implants above at L4 and L3 if necessary. I informed he (several times now) that he had even stated he no longer thought a 3 level global fusion was right for me as I'd likely need the other two levels fused at a later date.
I'm going to wait awhile and see if I can collect enough information regarding ADR results over fusion, plus hope that Pro disc will one of these days make FDA approval, and try to keep my bone density up and hope I don't incur anymore facet degeneration than I may be starting to have (none has shown so far on films), and if all else fails, I will give up lifetime Future Medical Benefits which is what I believe they are trying to get me to do, and just go to Germany~
I don't know what to think right now, I'm trying hard not to kick myself for not having the surgery already when WC was willing to pay however, I didn't feel my circumstances were right overall and I was just too scared.
Now I worry as my father is 84 (lives alone in Fla. where my WC bennies weren't accepted)and it's becoming more difficult for me to travel (financially each time buying 3 planes seats to lie down) and he really doesn't want to fly unless absolutely necessary. Yesterday he told me to go to Germany and get the surgery done there (which if I win lotto I'd consider)...
I know there is a lot of information here that can be useful to me tho if anyone else has fought WC and been successful with your arguements, I'd most definately appreciate your input, guidance.
Thanks all~
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