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The Big File All issues not easily categorized in the above forums are here. Comments on general health, diet, "getting comfortable," and more are here.


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  #1  
Old 03-15-2006, 03:35 AM
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Hi All,

Well, today I can relate to Frost: 'Two roads diverged in a yellow wood, and I, sorry I could not travel both and be one traveler, long I stood......' (actually, 'sorry I couldn't turn around and haul my tush out of the brush back to main civilization' is more apt, but distinctly lacks poetic quality and charm).

Verdicts are in from both my French NS and ProSpine; both concur that ADR should be done, and sooner rather than later. I have sufficiently spoken about the talents and dedication of my NS and how happy I have been with him thus far. Familiarity is reassuring. He is confident he can perform this operation despite the fact that he's only done 12 cervical ADRs to date. The surgery would cost me nothing, insurance covers it here. my NS would have to petition the hospital to agree to the operation (cost), but he says it's no problem.

Dr B has accepted me as a candidate too. We know his reputation and his talent. His operation would cost me a big hunk of money which insurance would not reimburse. Big problem. Different country, don't know the guy...shouldn't weigh in on a 'cold' decision, but hey, I'm human. I think. Most days.

My NS would use the Mobi-C, DR B would (probably) use the ProDisc. I can't find enough info on the former, but have not heard anything negative either. ALL my NS's patients are happy so far--but all are in their first year of recovery.

I'm not looking for anyone to tell me what they think I should do, as each of us needs to make that choice.

I'm looking for a few people to tell me a bit more about their experiences, good or bad,pros and cons, with ProSpine and DR B. Until I can get a better feel for this place and this man, I can't make this decision. Quality of care, pre and post-op? Ongoing evaluation? Hotline in case of panic attacks?????!!!!

Oh, and to add even more sensory pleasure to this experience: we will probably be moving at some point this summer. I need to be functional for that move. I am pretty functional now, but both doctors advise against waiting for surgery to improve the chances of successful implantation.

I could have surgery with my NS in April--DR B, I have no idea.

Ok, enough venting. Feel free to PM me with your own ProSpine experiences. They will remain confidential.

THX,

Trace
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  #2  
Old 03-15-2006, 06:06 AM
annapurna annapurna is offline
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First, there's at least one detailed post about Bogen in the FAQ's. I wrote it and Alastair moved it over about a year ago. There's probably a lot more now. If you don't speak German, working on hotel reservations may not be easy for you to do yourself but Dr. B's office will work that for you. Other than that, Bogen was quite nice and easy to deal with for my wife and I.

Laura should address quality of care as she actually received it, but it seemed to be excellent. There was one person getting lumbar ADR that was unaccompanied. I offered to run errands for him just in case he needed something, but as it was he was pleased enough with the care to never need to take me up on my offer. Dr. Fenk-Mayer has been an excellent reference for on-going care. She is occasionally difficult to reach, but once the answer was received, it always answered our questions as completely as possible.

I don't know what to say about a hot-line. There wasn't a year ago for non-German speakers as the office personnel often didn't speak English. Now things might be different.

Feel free to PM or email if you have any other questions. For us, the decision to go with Dr. B for cervical and Dr. Zeegers for lumbar was easy as our insurance wouldn't have covered ADR regardless. It was cheaper for us to go to Germany than to stay within the US.
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Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
General joint hypermobility

Jim - C4/5, C5/6, L4/5 disk bulges and facet damage, L4/5 disk tears, currently using regenerative medicine to address

"There are many Annapurnas in the lives of men" Maurice Herzog
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  #3  
Old 03-15-2006, 06:25 AM
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Thanks Jim--by the way, did they ever give you the 'Dammit Jim, I'm a doctor!' line in Germany?

Ah, yes...'to boldly go'.....

Trace
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  #4  
Old 03-15-2006, 07:30 AM
Rein Rein is offline
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OK; here's my perspective. Originally, based on what I know now to be utter speculation on the part of myself and surgeons who were supposedly well-connected with the sources of info, I believed I could get a ProDisc within X number of months. I tried to plan my life schedule (bareboat charter in the BVI, sailing w/my daughter during the Summer, Fall sailwash working season, etc.) around the timing of an operation and subsequent recovery. I�ve done this twice so far. Both times it turned out that no amount of guessing could predict when the FDA would approve the ProDisc. It STILL hasn't been approved, despite a pre-approval press release by Synthes...

In the end I decided to do whatever I could to stabilize myself and my condition and put my mind in a place where the timing of the operation wasn�t as important as taking care of myself right now. I know this can�t work for everyone, but for me this has been the single most important step in my journey to healing. I did the research to figure out what I need to do for myself to make me feel OK most of the time and be able to work (after a fashion) within the limitations of my injury. I�ve been in a place for about a year now where I can bide my time and wait for the disc *I* want and the surgeon *I* want, without feeling pressure from my body or my life to �get on with it�.

I accept that you don�t want people�s suggestions as to what you should do, so I�m only trying to bring to your attention things which you may have missed. Along those lines, I�d like to point out that no one from this forum would ever recommend to you that you get an operation from someone who has only performed a dozen, so far, of what is still considered very much an experimental prosthesis. If you want to gamble, then gambling with better odds going in would make more sense. Members of this forum can tell you all about letting someone with little experience cut you open. Many Charite recipients suffered huge problems later on due to non-experienced surgeons doing faulty implants or procedures. The numbers of ProDisc complications are much smaller. Draw our own conclusions.

I spent most of my early research time on anatomical studies. Then I moved on to the engineering of the discs under my consideration at the time (Charite, ProDisc). Then to the results of those two discs in actual cases. It was a no brainer for me that the ProDisc was much better designed and had far fewer failures of either disc or implantation technique. The engineering of the ProDisc, the required training necessary to be certified to use it, the surgical tools which accompany each one which guarantee a high degree of success in correct implanation, the years of waiting to see how well it would work long-term (after the first 60-odd implantations), all those things together satisfied me that it was a far superior disc to the Charite. Now that Dr. Yue has invented his own disc which combines the best features of the Charite and the ProDisc and eliminates all the problems associated with both, I feel even more confident about receiving the Activ-L. My point is that I read all I could about all the discs available and familiarized myself with their engineering enough that I could understand the differences and comprehend any subsequent reports coming out on either and then make a really informed decision, rather than one coming from a place of pain, need, necessity of timing or any other outside component not directly concerned with the efficacy of the disc itself.

The single largest factor to me, after the disc itself, was money (because I have none). I spend inordinate amounts of time dealing with how to get the disc I wanted with the insurance I have. In the end, I might have gone to Germany, only because BCBS was paying for some US patients to have it over there, despite not paying for it here! Insane but true! As far as I know, that�s still happening. The difficulties of the trip, recovery and added expenses might have been overcome, for me, if the Activ-L hadn�t been announced and hadn�t been free! This was the break for which I was really waiting, so now it�s a question of patience, because all the other parts of the puzzle are in place (good disc, good (trusted, responsive) surgeon, close to home, right price, good support system at home). Since I�ve overcome the anxiety associated with a faulty mental attitude towards the waiting, I�ve pretty much got it licked. When the disc is approved I�ll get my surgery. When that will be I don�t know. I�ll tailor my own life around it when it happens. My family (my wife) is extremely supportive and is willing to do whatever it takes to help me get better, whenever that may be. She has seen how debilitated I became, how much pain I was in and how this has affected our lives, so she�s all for doing whatever I feel comfortable with, as long as it heals me, eventually.

What can you take from this? Research! Educate yourself *and* your family about all the ramifications of this problem. Get them on board with your problem in such a way that they understand how serious this is for you and (ultimately) for them. So many people on our forum don�t have a family, or have family members who just don�t understand how much this affects your life and how difficult it is to deal with this problem itself, never mind trying to find your own cure. Look at this problem in long-range terms, because (as most of us old-timers have learned through bitter experience) it will most probably *not* be solved as quickly as you initially believe (or desire). If you manage to get yourself healed quickly, great! However, putting your mind in a place where you can accept a long-range solution is much more realistic, given what we now know about the industry and our bodies. If you do manage to get yourself into that mental place, you become much more enabled to make a more informed decision about an ultimate, successful solution.
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03/09/26 - Ruptured L5-S1.

Years of pain, discectomy, research into anatomy, hardware, clinical trials, facilities, surgeons, techniques, insurance. Attempts at ProDisc, Activ-L trials. Now, low bone density. D'oh!!!

At 61 years, no longer qualifying for trials due to my age (chronological, not physical or mental).

2009 - Working on improving bone density or getting rich so I can go to Germany, where medicine and insurance have gone beyond the Stone Age.
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  #5  
Old 03-15-2006, 08:24 AM
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Nice post Rein, thanks. Food for thought...but a big part of my problem is I'm a cervie case, and I can't find ANY info on this Mobi-C which is supposedly second-generation, 'easier' to implant correctly, has been done over 350 times in Europe with 'exciting' results (thank you Ldr Spine, but could you clarify?)and would save me a lot of money while 'fixing' my problem.

This compromises, seriously, the 'informed decision' aspect of the surgery. I'm not waiting for approval--the choices are there, and both doctors say 'choose now, rather than later'. OY.
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  #6  
Old 03-15-2006, 04:51 PM
Dale S Dale S is offline
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tmont,

My experience in Bogen and Straubing with Dr. B and his staff couldn't have been better. Never once did anyone tell me that they were the 'doctor' despite my refusal for a blood transfusion. When out of the hospital and in Straubing, Dr. B's staff even made a house call to my hotel. Can't even imagine anyone US doctor, no matter what the underling, doing that.

I really, really, REALLY didn't want to go to Germany but insurance, etc, etc. I would now not hesitate to go again.

I have also found Dr. B personally to be generally unreachable but Dr. Fenk-Meyer, his partner, is, as well as other staff. Anita Pendulat is now their American liason and will direct all questions to the proper person or dept.

I wish you luck,
Dale
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  #7  
Old 03-16-2006, 12:38 PM
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Dale,

You refused a blood transfusion? Or whas it a PLASMA transfusion?

I have been told that might be brought up in my case. Be interested in knowing more about that.

THX.

Trace
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  #8  
Old 03-20-2006, 10:44 PM
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Trace,

I had 4-level cervical ADR in Bogen with Dr. Bertagnoli and the ProSpine folks about 4 months ago. If you'd like to talk, I have some international calling time ... PM me with contact details if interested.

In any event, good luck with your decision. Hopefully you'll be able to decide soon and then let go of the anxiety of decision-making (and head on to the next parts! )

Best,
Jennifer
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  #9  
Old 03-24-2006, 07:43 PM
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There is no simle answers to this..you just have to realize that cervical adr is new, and that you take a chance. When no long term datas are not awailable, you have to act on your stomach feeling and your belief in the method.

There is no data yet to guide us. It's too early.
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  #10  
Old 03-24-2006, 10:44 PM
laura-w laura-w is offline
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What happens if someone like Trace has the surgery in Germany and, God forbid, there are problems. Are follow up issues of any kind covered under the initial cost of the surgery. If you get back from Germany to your home country will your own insurance then cover problems which began with a proceedure done elsewhere. Sorry for the depressing question. I have been wondering about this for awhile.
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DDD levels C2 to C7 and L5/S1 with moderate to severe stenosis at C6/7. No procedures done yet.
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