Choosing ADR or fusion

[WayDownInCoCrMo]

Quite a confusing conversation. Especially if your a suffering patient just looking for clues on what is better: fusion/ADR ... and in what cases.

What I read here: Do your homework, read, learn, question ... and simultaneously ... do not trust published data (i.e., what you read), do not trust your surgeon's answers to your questions, and much of what you learn (especially on the internet ...like on forums) is apparently garbage or dangerously misleading. One person says - decide on your procedure, then find a doctor who agrees. In other words, you must be smarter and more knowledgeable than the surgeons themselves. How can you do this? Attend conferences? No, of course not. You can barely move. Ask multiple doctors? Of course not ... again, you can barely breath, much less sit for hours in a waiting room. Send email? Forget it. No doctor is going to give medical advice except in person. Count the happy people vs. sad people post surgery on forums? Not after seeing the misrepresentation, defamation, censorship and banning of failure case we see on sites like ADRsupport. In any case, we can easily see in the member lists that the successful people's posts of 'encouragement' outnumber the failure warnings 1000 to 1.

Believe it or not, I studied like mad (on ADR) before leading my wife into this hell. EVERYTHING said ADR was supperior in every respect. Now, I feel like a Joseph Fritzl ... going to work, stores, sleeping free of pain ... while my wife is facing FIFTY years at least of hell. A destroyed leg, and the consequences of a late lateral explantation of a Prodisc. Hard to believe this was my wife only 3 years ago ... before we were tricked into 'volunteering' for someone's sick experiment ... for data that no one believes.


So, as Mark said on ADRsupport long ago: "This is a dangerous landscape. We can't trust the studies... we can't trust the statistics... we can't trust the anectodal evidence... we can't trust the doctors to always know what's right, or to always tell us the truth... and on and on."

I doubt you will be able to find that quote on ADRsupport ... as H has locked the doors, so to speak. By invitation only.

So, this begs the question: Who/What do you trust? Obviously, the first to exclude are those who have a financial conflict of interest. Next would be data which is not double-blind class I controlled (i.e., basically everything from Europe is self-monitored). Third would be, anyone who suggests that a selected set of success stories from forum members is justification for ignoring the generally accepted practices (rules).

Some of those people, even have the audacity to suggest that facet arthrosis is not a contraindication ... and then kick everyone who dissents off their board.

Question (back to Sharman's original question - regarding 'fit'): Does anyone know what the minimum height of the Prodisc-L is, and resultingly, what is then the minimum height of a person's natural disc?


Question 2: What grade of facet arthrosis is a contraindication to ADR?

Yours,
Matt

[dshobbies]

Matt,

Your pain in so evident in your post. What you and A have been through, are going through, will go through, no one should have to. I am sorry that you find yourself in this position.

I think your post demonstrates the need for educating oneself more than ever. If learned, studied doctors have differing opinions, how does anyone know which is the truth? Excellent question. And no, I don't believe someone should chart their own course and then find a doctor who agrees with them.

First, any surgery has it's own risk. When the spine in involved, this decision is multiplied too many times over. The best advice, which I still stand by, is the excellence and reputation of your doctor. A is the proof that even that criteria isn't fool proof. I too had a bad experience with a renowned surgeon. So what can someone do to insure this doesn't happen to them?

The truth is I don't think they can. Bad things happen even with the best advice/intentions. Bad things happen under the guise of basic medical care. I've no doubt, based on insurance approval and despite known contr-indications, I could have found 10 doctors who would have fused my 4 lumbar discs. Would this have been wrong? I honestly don't have the answer to that one.

In short, there is no cut and dry answer to too many medical questions. Everyone has to decide for themselves which information they find valuable and which to throw in the trash and the only way is to educate themselves. If an answer has leanings, go with the leanings. If 50/50, try to find examples. Are you wrong because you disagree? Are you right because others agree with you? I don't think, at least not in our lifetime, spinal procedures will progress to any definitive procedures. It's people like us that will pave the way. In the meantime and because of all the above, we owe it to ourselves to do the best we can with the best we have. I do believe that one day it will be simple but as to when is only in those evasive crystal balls.

I hope you and A find the relief you seek and this nightmare finally ends.

Dale

[Diane]

Matt,

I'm sorry that you are experiencing this spinal hell. Watching a loved one in pain is difficult and exhausting. It's been five years since Mark's chronic pain, and it's still difficult for me to think back to those days. Don't feel guilty about being able to live yourself. If I wasn't so busy with work, childcare and housework, I don't know if I would have made it. You need to take care of yourself so you can remain supportive. I was fortunate to have a best friend who would call me up and take me out even when I tried to decline.

Don't beat yourself up about the decision for ADR, sounds like you did your research. I'm sure it wasn't all your decision. As far as ADR vs fusion I don't have any magical answers. I'm happy the first ADR patient 24 years ago was willing to try the procedure. He still plays tennis and because of him I have a chance with my ADR.

Don't give up, recovery can be a long process. When Mark was at his lowest point, we got a puppy. I know that sounds crazy! Who needs the extra work, but it worked magic. Maybe an older dog would be easier, but they are great for companionship.

Diane

[mmglobal]

I don't think I can properly express how much of a difference getting Taffy made to me at a time when I was pretty severely disabled and depressed. Diane was brilliant in making this happen. After Taffy was older, the companionship was important, but right from the start, things were different. I suddenly had something I needed to care for, as opposed to the focus on my pain and my problems. I suddenly had something that made me laugh and smile a hundred times a day. Fortunately, Taffy was a service puppy, so she came with an instruction manual. (I wish our kids came with one!) We had a job to do... not only was it fun and rewarding training her, but it also made Taffy a well trained dog that is so much easier to handle.

I wish I could write more now... gottal run!

Mark

[WayDownInCoCrMo]

Dear Diane & Dale,

Congratulations on your successes (including families, children, friends and puppies.) I would love to have a puppy myself, but for Anastasia - with a destroyed leg and weakened back, having a boisterous puppy is probably not a good idea - no matter how much I beg.

Thanks for the concern about me ... but trust me, feeling sorry for me is the last thing anyone should do. I have no pain and a full life.

My point here is to emphasis that I did a hell of a lot of research ... only to find out later that it was all lies. I heard this from several German surgeons too.

I'm not beating myself up on our ADR decision ... we were sure we chose the best surgeon with the best device ... given everything we read, studies, comparisons, wear rates, ... everything. If I could have done more, (like I didnt do with the knee surgery), then I would be distraught with guilt.

What I'm disturbed about, is that no-one even discussed fusion. Maybe it was our pure bad-luck to be living in Germany. Maybe its was our dumb luck to have read through ADRsupport at all the oozing praise of these surgeons. I studied everything, and eventually came up with the conclusions that:

1) The Prodisc has a 94% success rate in 60 year olds, 98.2% success in single-levels with average ages in the 45+ range, and no bad outcomes - compared to much worse results with the Charite. According to Dr. B. My 31 year-old wife had 1 level (l4/5) DDD, everything else perfect ... (but that was according to images from nearly 1 year before the ADR surgery.) Now I know those Prodisc numbers are not class I data. Not that it is relevant to our situation - since my wife was not a candidate at all. If she was a perfect candidate, I think everyone would agree that choosing a device with 98.2% success is better than something with 64% success, versus 58% for (BAK) fusion. Or maybe we should revisit, and look at the Charite vs. Prodisc, with 93.9% (Charite) vs 83.3% (Prodisc). In any case, the FDA's results on the Prodisc were more like 53% ... but I didnt know that at the time.

2.) The AK and Sten'm are financially driven institutions, according to several German doctors. However, Dr. B. appeared as an academic. I like professors - they are only interested in improving humanity. They dont care about money. They will take a special interest in every patient. That is what I thought. Too bad they ignored our begging for a review session ... since 5 months before, and 3 months after the surgery. The surgeon Never even visited for a moment. Now I suspect he is probably more financially involved than all the rest combined.

3) I believed that the other institutions were assembly machines. We had already seen how the knee surgeon at AK never even saw us ... even after 4 extremely painful trips. He was too busy in his assembly line. We were foolish enough to trust the salesman, that they were going to do as written - check for a torn medial meniscus. They lied. We have written reports from many surgeons (including German), that her Patella was perfectly healthy. But, in any case, I was totally stricken when the ADR surgeon never even visited once afterwards. We were in the hospital 7 days, and in a hotel nearby 2 weeks. We begged ... and were totally ignored.

4) I read that fusion is horrible compared to ADR. That there is a 9% chance of revision surgery with fusion, lots of blood loss, an extremely long recovery period, a need for posterior screws, a high rate of morbidity with ICB (iliac crest bone), you will be stiff as a grandma, and the rest of your discs will blow sequentially. That, as I recall it, was my honest perception. You will note, none of the ADR kliniks tell you about the modern versions of fusion with 99% fusion rates, no need for ICB due to rhBMP-2 (bone morphogenic protein), the new PEEK cages which are MRI translucent, the minimally invasive (MAST) fusion techniques ... or even the micro-invasive techniques of injecting BMP into the disc which has been shown to stimulation regeneration. Even those damned trials compare ADR against failed fusion techniques (BAK). Its Criminal.

5) I was told that, in the case of failure of the Prodisc, it would be simple to revise it to either a different device or a fusion. I was not told that every surgeon in Germany would refuse to revise, because the scarring over of the veins would make it impossible to remove except laterally. It was not revealed that lateral explantation would require a huge osteotomy (remove of vertebral bone) ... and severing of the sympathetic nerves running through the psoas - leading to horrors that you dont want to hear about. I found this all out later. Of course, you cant expect your surgeon to tell you all those details ... but you can expect someone (i.e. Synthes) to have addressed the concern ... since we can in fact expect a lot of them to fail.

6) I was not told that, the Prodisc only comes in 3 sizes (10, 12, 14mm), while the Charite has a lot more - down to 6.5mm in height. Also, the Prodisc has a minimum lordosis of 6 degrees, so if your natural segmental lordosis is very small, they will jam this thing in you, bending you backwards into hyperlordosis, permanently. If your natural disc height is small, then the Prodisc will jack you up ... and guess what ... its not just about distraction. Its your whole spinal unit. Its designed to fit perfectly ... which means the facet joints are only designed to work with an exact height of the disc. Its like a gate. If you mess up the hinge's height, the latch completely misses. Except, in spines, the missing causes tearing and crushing of facet cartilage. This probably explains the 32% facet degeneration reported post ADR.

In summary, we have been run over by the loco of ADR, its financially conflicted proponents who publish outlandishly high rates of success, zeolots who present only the positives on ADR ... and not the litany of dangers. We have naively thought that certain surgeons are only academically driven, when it turns out that they have a huge financial interest. We were fooled into thinking the surgeon would make a thorough review beforehand, choose the best possible solution out of all available, and that he would give every bit of concern and compassion in follow-up ... not treat us as a legal nuisance.


So, anyway. Sharman is asking for advice about ADR vs. Fusion ... and everyone is saying - you need to educate yourself ... or praising the thoroughness on his questions... or talking on some other subject (uh, me included). But no one will address the questions directly ... we are basically saying go find your information elsewhere - while also saying that info is bogus. We all believe that ADR is better than fusion ... at least in the short run ... if all the patient selection criteria are met ... and the surgeon is highly trained and skilled ... and the surgeon is not financially biased to use an inappropriate device or technique ... and the patient has a thorough understanding of the risks and expectations (15% pain reduction = success), and the surgeon is going to openly and honestly take responsibility for whatever results instead of trying to cover up a major blunder and just hope the patient goes away ... like all the others.

I leave you with a few key quotations:

"Disk replacement is appropriate during the narrow time window when degeneration is limited only to the disc and signs of instability or degeneration of the posterior elements have not yet appeared. Limited by this time window and the inclusion criteria dictated by the US Food and Drug Administration (FDA) for disk replacement, only 7.7% of patients admitted for lumbar spine fusion during the study period were found suitable for disk replacement. "
http://www.orthosupersite.com/print.asp?rID=25668

"the FDA and DePuy Spine recognize the limitations of the available data. They restrict use to a relatively narrow indication" medscape

"Disc Arthroplasty changed my practice completely: Today, after 6 years experience, Disc Arthroplasty has replaced ~ 90% of my Fusion Procedures!" Dr. B.

"Reoperation Rate After Instrumented Posterior Lumbar Interbody Fusion: In the present study of 1680 patients, the revision rate amounts to 13.2%"

"Suboptimal patient selection and/or surgical technique accounted for the majority of failed disc arthroplasties." spine

Article which debunks adjacent segment degen with fusion

[B13s]

Originally Posted by WayDownInCoCrMo

What I'm disturbed about, is that no-one even discussed fusion. Maybe it was our pure bad-luck to be living in Germany. Maybe its was our dumb luck to have read through ADRsupport at all the oozing praise of these surgeons.

As you can see I also live in Germany - and out of 4 different clinics/hospitals only one recommended ADR - and it was Alphaklinik. Two others suggested fusion in a coming years and one - microdiscectomy. You cannot really solely relay on the internet only...

[Maria]

The only thing I have to add here is in response to the puppy idea. I got Lola and the thing that used to bother me so much was walking yet now I can walk and walk. I thank Lola for that. She gave me a reason to walk as well as the daily motivation. She's not a well trained dog and in fact she's terribly spoiled and has a mind of her own as mini schnauzers do but thanks to Lola I'm quite the walker now and even lost the excess 10 plus pounds I had been carrying around for years.

BTW, Taffy is a really sweet dog. Lola's companion, Leila is a nearly 8 y.o. lab (my stepson's) and she is so well trained and great to walk as well. In fact she doesn't need the leash at all.

Should anyone get a dog to walk, make sure that the dog isn't walking you. That can lead to problems with tugging of one's own body parts which may lead to flare ups of injured parts.

While I can pretty easily walk Lola alone, walking Lei and Lo together has lead to flare ups with my c-spine.

This is a bit off topic re what's better, ADR or fusion. I say dog walking in my own case for now is better than either since I've not yet had further surgery....

[ans]

I never researched the most recent fusion modalities success rates. An other forum is filled with the emotional debris of failed fusions. I have extensive DDD (L -2 to L-5), questionable facets acc'd to MRIs, and adjacent segment syndrome's a concern. Nice summarization job but sorry you had to do it.

+ +

There's substantial literature on "pet therapy" and how this helps people heal better and diminishes depression. Even hardened prisoners love caring for animals. Remember how Koko mourned (warning: hokey music):

http://diabellalovescats.com/koko.htm

[WayDownInCoCrMo]

"Maybe it was our pure bad-luck to be living in Germany" ...

Meaning, in the USA, with the Prodisc not approved, we probably would not have had so much access to so many clinics (Stenum, AK, Pro_Spine) ... which specialize in ADR. Of course, we thought it was amazingly good luck at the time, that we lived only 1 hour from Straubing, and 30 minutes from AK. Of course, if we were natives, we may have had more success finding other Orthopaedic clinics.

Let me balance my criticism: Over half of the FDA Prodisc trial surgeons in the USA had financial conflicts of interest. They should be fined at least - for the amount invested. The Prodisc FDA approve must, by Federal law, be thrown out. That's not from me, its from the Senate Finance Committee, headed by Senator Grassley. I do not subscribe to the line that the surgeon must invest in a company in order to improve the technology. They should put themselves above it - its their oath.

Please note, we did get a lot of inputs from German neurosurgeons AFTER the ADR ... but that was only because I found a site listing ever Prodisc specialist in Germany ... and emailed to every one of them.

It would be great if you could post the names of the surgeons/kliniken who have more conservative views on ADR.

Thanks! Best Regards,
Matt

[ans]

Matt: given all the (perhaps rightful) criticisms of ADR/ProDisc, there have been some outstanding successes (and w/Charite). I wonder, given both of these ADR's shortcomings, what happens to make a sucessful ADR? I'm thinking of excellent placement, no pain relief from facet injections, etc. I hope I don't seem insensitive, I'm not. Maybe there's some factors that have not been fully recognized. (As I'm in the middle area of MRIs showing facet "arthroses", the nuances of this maze confuse me). With Regards ~ Allan