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LumbarSpine 05-10-2017 12:59 AM

Greetings! Lurking for a while, just introducing myself!
 
Hi Everyone,

First, let me say that although you don't know me, I feel like I know some of you. I've read quite a few lengthy threads on this site, and it has been very educational. I really appreciate all the information that people, often over the course of multiple years, have posted here.

I won't bother to repeat what's in my sig block, but I'll expand a bit by saying that I have to sit for my job, and of course, driving requires sitting. So, my lower back pain is pretty disruptive, and I'm in some level of pain nearly 24/7, although it is normally a level of pain I can deal with. I used to have a flare up where the pain would get bad enough that I essentially couldn't move maybe once a year or less. Lately it's been more like every couple months that I end up bedridden for a few days. And that's already with accommodating it more than I would like (e.g., by avoiding sitting -- which isn't easy).

I know what I'm describing isn't as bad as some of you have it. In fact, after seeing many doctors for this, probably the most frequent opinion I get is that I shouldn't do anything (I'm in the US -- I think this attitude is pretty typical here). They say that my symptoms aren't severe enough and point out that with surgery things can go wrong. When I asked one doctor why he didn't think I should do anything when I'm in pain on a daily basis, he said "Well, you can walk now. What if you can't after the surgery?" OK... that's scary. But is that really useful input? I don't know. Of course I know that anything can happen, but if horrible outcomes are, e.g., 0.1% of the time, personally, I'd risk it. Many doctors don't seem to agree.

Incidentally, I'm here because I'm interested in ADR pretty much exclusively (I know some of you have had fusions or hybrid surgeries). I did see one doctor (in the US) who said if he did anything, it would be fusion, not ADR. I had already done quite a bit of research at that point, and so I said "If I had a fusion done, my understanding is that it greatly increases the chances of problems in the adjacent levels down the road." He said "Oh yeah, if you get a fusion done, you'll be back to see me for the other levels." What?!? And yet he is still pushing fusions... At least he was honest, I guess.

It wasn't until I started reading this site that I realized that there seems to be a big dichotomy between doctors' attitudes in the US versus other countries. I've now had my situation assessed by Dr. Bertagnoli, Dr. Ritter-Lang, and Dr. Clavel (among other doctors who I don't see mentioned on this site, such as Dr. Bae at Cedars Sinai in Los Angeles). Without fail, anyone who is an ADR expert (and so isn't pushing fusions) says the same basic thing: Replace L4/L5.

Of course, the details aren't the same. In the US, or with Dr. Bertagnoli, it would be a ProDisc-L. With Ritter-Lang or Clavel, it would be an M6-L. And, while most say they would use an anterior approach, Bertagnoli said he would go posterolateral (which is interesting in that other doctors, even experts at ADR, seem firmly convinced that posterolateral for these discs is impossible due to not providing enough access).

So, that's pretty much it. Where I am now is having largely decided that no, I'm not going to put up with this pain in perpetuity, even though some doctors say that is exactly what I should do (and with the narcotic scare that is currently going on in the US, doctors don't want to prescribe them, I've never found muscle relaxers or NSAIDS to do anything, and so in essence the doctors here are truly saying "I can't do anything for you. Deal with it."). Assuming I do have ADR done, I'm more hazy on traveling abroad versus not. That really boils down to how much I want an M6 instead of a ProDisc. (I don't want to start any religious wars, but I'll probably be posting questions on that topic, just in case anyone has new insights or statistics I haven't seen).

Thanks for listening, and thanks for the great community.

Blizzaga 05-10-2017 02:34 PM

Many options, many choices...
 
Hi LumbarSpine,

Welcome! Yes, your story has many similarities to mine. It is a big decision to choose the surgeon and the disc type. Every surgeon will have a different recommendation. It seems that you are thinking between Prodisc-L and M6-L. In my opinion, those are not the optimal discs to choose from. If you want to go with an UHMWPE disc, Activ-L is your choice (FDA approved in U.S.!). If you are going for elastomer, I would place my bet on LP-ESP, with possibly Freedom being relevant in the near-future. Just to add some more choices to confuse you even some more ;)

FutureRobot 05-10-2017 03:44 PM

I agree with Blizzaga. In the US, you should be deciding between the Activ L and possibly the Freedom (should be approved soon). I know that Texas Back is using the Activ L now. I also think that at l4/l5 the debate is clearer than at l5/s1.

LumbarSpine 05-10-2017 06:08 PM

Thanks for the input. I had shied away from the ActivL for the same reason I might shy away from the Freedom (whenever it comes out): No surgeon is going to have that much experience with such a new disc. I assume that their skills from using other discs will largely transfer, but would rather be, e.g., Clavel's 2000th M6 disc, or someone else's (also of stellar caliber) 10th Freedom?

That's not rhetorical lol. I'd really like to know what people think about using the latest and greatest, assuming a great surgeon, but one who simply cannot have had many years of experience with the disc being used.

Edit: I just came across this when researching the Freedom disc: http://denver.cbslocal.com/2016/06/1...ed-incoherent/
This is the guy that's one of their spokesmen?? He seems to be officially associated with them: http://www.prweb.com/releases/2016/05/prweb13380881.htm

ouchtear 05-15-2017 10:19 AM

Keep in mind that there are UK doctors that have done thousands of Activ-l's in the UK and Europe with great success too. Dr. Clavel's web site states that he will use a Activ-l on occasion depending on the patients anatomy.. Also Activ-l has been around for alot longer and seems to have a proven track record. M6 is still fairly new and not as long term of a study.. I always go back to it's based on how good your doctor is.. Your right .. I would want a European doctor that has done thousands instead of a US doctor that has done 10 or even a 100.. For me it does come down to the Activ-l or the M6-l and lately I have been leaning towards the Activ-l..

Johntpr 05-15-2017 03:35 PM

I had 2 lower level M6-L done by Dr Clavel a montb ago and am doing very well.

If I can help you answer any questions, let me know

Harrison 05-16-2017 08:39 PM

Hey LS,

In case you've not see the topics relating to Ritter-Lang and Stenum, pls see this forum, the 2nd and 4th topic:

https://www.adrsupport.org/forums/forumdisplay.php?f=51

Stenum's reputation early on in the 90s was to do ADRs as quickly as possible. And they bragged about it. Really bizarre thing to brag about; given it led to SO MANY complications, many of which were severe. They created the largest number of complications for the Charite than any other clinic. And yes, Ritter-Lang was front and center.

From there, they forged relationships in the U.S. (et al) with "patient advocates" who sold their services. These pinheads were unscrupulous and devious, as these topics documented.

There are so many other good surgeons, stay away from these crazies. And in the U.S., some surgeons have been doing ADR for 17 years now.

Hope this helps.

LumbarSpine 05-22-2017 07:07 PM

Thanks Harrison. I did read the Ritter-Lang stuff. Obviously not good. But, it sounds like they have cleaned up their act. Would you agree? I'm leaning towards Clavel regardless, but I'm wondering what the current thought on Ritter-Lang is.

For those who are pro Ritter-Lang, might I ask why? My assessment is pretty superficial, and goes like this: Ritter-Lang had problems, at least in the past. Maybe they are all 100% resolved -- I don't know. Everything I read about Clavel is positive -- no problems in the past. So, why not go with Clavel?

LumbarSpine 05-22-2017 07:14 PM

Quote:

Originally Posted by Johntpr (Post 116169)
I had 2 lower level M6-L done by Dr Clavel a montb ago and am doing very well.

If I can help you answer any questions, let me know

I'm curious about how your recovery went (I know it's ongoing, but I assume you are through the worst of it). One thing that I find confusing (if only there were just one thing) is that different doctors seem to have pretty different views on recovery time for what amounts to the same operation (regardless of the disc used, almost all are using an anterior approach).

I had one doctor say he could do the surgery as an outpatient procedure if I wanted (to which I said "Hell no!"), which sort of implies to me that it's ok to do normal movements immediately. I read that Clavel wants you to lay there and not move at all for a day. And at the more onerous end of the spectrum (not that this necessarily conflicts with the previous statements -- it's a different question), I've had doctors say that I probably won't be able to go back to doing a full day of work (at a desk job mind you -- no manual labor) for 1 to 3 months. That seems like a long time for just sitting at the computer.

Input from anyone that's gone through this would be great.

Harrison 05-22-2017 09:57 PM

Why not go with a Euro surgeon? Of course, you can and may have good results. My argument has been consistent: you can achieve similar outcomes with the same or less money stateside. And avoid the agonizing travel and lack of follow-up care. If things get really bad post-operatively, you have no legal tools to employ for Euro-docs -- and I mean none. The Germans in particular make it impossible for patients to sue for malpractice.

Some Euro docs even try to sell "extra" insurance if there are complications, and some patients in this community have purchased it. I find that really unscrupulous, but that's just my opinion. Some of the Euro docs are getting between $60,000 - 120,000 for spine surgeries in cash.


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