Another L4-L5-S1 story
First, I want to say thank you to the people who run this site and all of you who have shared your stories. I've been surfing the web for awhile and there is a dearth of information about ADR beyond the basic marketing & trials material.
My history, in a nutshell: I've never had a specific back injury but have experienced periodic severe back pain for over 15 years now. Previously, ~3-4 times per year I would experience a disc/nerve injury - always triggered by some mundane event like reaching out to pick something up, bending over to tie my shoes, etc. Once the injury occurs, I experience intense pain for a day or two, then milder pain for a few more days, and after a week or so from the injury, I'm "back to normal". Being a stoic, "tough it out" type of person, I assumed I just needed more core strength or whatever. After a decade of this, I finally saw a doctor, got an MRI, and found out that I had compression and bulged discs at L4/5 & L5/S1, signs of annular tearing, and general arthritic vertebrae & facet joints. Understanding the problem better, I've been able to reduce the frequency of severely painful episodes but I pretty much have constant mobility issues and milder pain. In one PT episode, the therapist noted that I already move as if my back were fused since my muscles have adapted to just isolate that part of my body. I am much more liberal with NSAID use now, and I'm sure that helps too. I looked into ADR 5 years or so ago but it seemed premature for me at that time (and immature in the US). But after another recent severe episode, and another MRI that shows further degradation & bulging, I'm starting to investigate ADR again. The thing that I find extremely frustrating is that there seems to be nothing that the doctors can do right now. I'm basically waiting until my situation degrades to the point of having a massive disc rupture and at that point they will fuse. My doctor suspects that my discs are under severe pressure and that it's inevitable that one day I'll have "the big one". So I'm basically on a plan of trying to stabilize status quo and delay the inevitable injury and surgery as long as possible. Being the type that previously measured time between doctor visits in years (usually many of them), I don't want to rush into surgery and certainly not into a fusion where the result may be worse than the current symptoms. But it's frustrating that 1) I don't like being in this reactive mode and want to know what my options are before I get to the point where a massive rupture necessitates emergency surgery, and 2) my situation seems like it will keep degrading and "doing nothing" for now may cause my end state to be worse. That's the short of it. Thanks for reading. |
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Keep the faith and don't take no for an answer. You are your only advocate. |
AZMtnman,
Have you considered getting an injection of your facet joints? That might decrease some of the pain related to arthritis in the facets, while not compromising your ability to get ADR or fusion in the near future. I had this procedure done myself recently at facets of level C5/C6. It helped a lot and will have a longer lasting procedure related to the facets soon. At the same time, I plan to have ADR at the same level on May 5th. Good luck to you! Gene |
CB has some good advice.
Keep the faith and don't take no for an answer. You are your only advocate. |
I've read about injections but haven't pursued it with my doctor. For me, I think facet issues are secondary to the progressively bulging discs. But I do plan to look into it more.
How long have the injections helped before the effect wears off? My doctor does seem to have a pattern - do nothing for as long as you can and when you can't take it anymore, then fuse. I'm sure there are some very positive fusion stories but as someone who leads a pretty active life, it is disturbing for me to consider possibilities like not being able to mountain bike or backpack. I'm definitely in need of another opinion. Logistically, how do people contact remote clinics? These people seem so busy. Do most just reply to email, or setup a consultation via phone? |
I suggest you read posts 5, 10 and 11 of my thread "Germany & Dr. Bierstedt for Cervical ADR?" The names of the four main surgeons in Europe people here use are listed there. Also, listed are some of the top U.S. surgeons.
For Dr. Bierstedt, I contacted his office directly versus using a liaison in the U.S. His name is Malte. m.petersen@germanspinespecialists.com For Dr. Zeegers, I filled in the form on his website and he called me almost immediately. In both cases, I wrote up my history in a two page summary and sent it to them so we would have a place to start the dialogue. I have not contacted Dr. Clavel but, will just do so at his website. One of the best places we have in Arizona is The Barrow Institute but, I would only consider them for the Mobi-C (cervical disc). Their Mobi-C surgeon is Dr. Chang. I'm still trying to get into see him. The Pro-Disc is the only lumbar disc approved in the U.S. but, I believe that is about to change shortly. Hopefully, one of the lumbar patients will fill in the details on it for you. I just got my lumbar MRI report today and am concerned that I may need an ADR in my lumbar spine. I would not consider the Pro-Disc because of all the unfortunate stories I have read about it. |
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CB, see Activ-L update under Anthroplasty Central. All I know is what I have read on this site. The post said mid 2015.
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I saw those posts also. But I don't want to be the first person to sign up for a few device and/or process if I can help it. I don't even like to buy a new cell phone until it's been on the market for a bit, let alone a new spine.
Hopefully I can hold out for awhile and the market will respond positively to new devices. |
I believe you are incorrect. Take a look at Dr. Zeegers website. Good luck.
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But the benefit of having a new device like Activ-L in the US is to use US doctors with US insurance. And most of those doctors are starting from scratch with experience with a "new (to US)" device and new surgical protocol. Hence my comment about not wanting to be the first person to sign up.
International surgery is clearly a different conversation and process maturity and surgeon experience are not the risk factors I'm concerned about there. Just my opinion. And my opinion is subject to wild fluctuations depending on how my back feels on a given day. |
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These doctors arent starting from scratch.
Many were involved in the initial FDA trials. Depending on where you live you may find one close to you. Do your research https://clinicaltrials.gov/ct2/show/NCT00589797 Investigators Principal Investigator: Rolando Garcia, M.D. Orthopedic Care Center Principal Investigator: James J Yue, M.D. Yale University Principal Investigator: Dom Coric, M.D. Carolina Neurosurgery and Spine Associates Principal Investigator: Steven Dennis, M.D. Hoag Memorial Hospital Presbyterian Principal Investigator: Federico P. Girardi, M.D. Hospital for Special Surgery, New York Principal Investigator: Mick Perez-Cruet, M.D. Michigan Head and Spine Institute Principal Investigator: Harel Deutsch, M.D. Rush University Medical Center Principal Investigator: Glenn Buttermann, M.D. Midwest Spine Institute Principal Investigator: Dzung Dinh, M.D. Neuroscience Education and Research Foundation Principal Investigator: Vikas Patel, M.D. University of Colorado, Denver Principal Investigator: Christopher Ames, M.D. University of California, San Francisco Principal Investigator: John Regan, M.D. St. John's Hospital and Health Center Principal Investigator: Andrew Dailey, M.D. University of Utah Medical Center Principal Investigator: Darren Bergey, M.D. Rancho Specialty Hospital Principal Investigator: Brian Dalton, M.D. Hamot Medical Center Principal Investigator: Scott Leary, M.D. Scripps Memorial Hospital La Jolla Principal Investigator: David Hart, M.D. University Hospitals Cleveland Principal Investigator: Antonio Castellvi, M.D. Foundatin for Orthopaedic Research and Education Sorry to sound snippy but if you think its easier to fly across the world and let a doctor you never met, who you hope has your best interest at hand while paying cash with no follow up to future problems you need to invest the time |
Looking at that trial report, there were 414 total patients and only 2 in 3 received the Activ-L. Spread that out across all of the PIs and you're left with a pretty small sample set.
I meant no disrespect to the PIs. My point was simply that there isn't much experience with the device and that just takes time. I personally hope the adoption rates for new devices take off because it would make my personal research and choices easier if there were thousands and tens of thousands of successful cases vs dozens and hundreds. |
NJ Jene, Thanks for the info on facet injections. I'll definitely need to look into this further. I always thought that I had a good relationship with my doctor but I have to admit that I'm getting a bit frustrated with the waiting game. Particularly if the end game is fusion.
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Sometimes paying cash and going across the world is the best answer. There are excellent surgeons out there who DO have their patients best interests at heart. Yes follow-ups aren't free, but you can get someone locally to follow you after. If you need another surgery in the future (god forbid) then you pay again - I realize that isn't option for everyone but it is for me. Once there are experts in the US and Canada with 3rd generation discs that are FDA approved then my opinion will likely change but before that I will be highly sceptical. |
That not my list, that is a list of doctors that participated in the clinical trials.
I wasnt talking about free follow ups but the fact that an out of country doc cant see me next Tuesday for a follow up. Also getting doctors to follow up after someone whose done thousands of ADR implants? Why would you need a follow up if these doctors performed thousands of implants? Some people might not have the luxury of paying cash and then oh well, let me just pay again... A doctor like James Yue is one i would trust and the reason why is because of research. Zeegers who is the so called pioneer continues to use the Activ-L. An ADR is not a magic fantasy prosthesis that will cure all your back ailments. I will quote again that Bierstedt looked at my MRI,listened to my complaints in NY city and told me my facets joints were good enough for adr. Lets also replace the slightly bulging one and make it a 3 for 1 trip. Like a FN oil change i was going in for... |
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I don't know if traveling to Europe is an option for you, but you may want to consider it. Whatever you do, I suggest reading plenty of that device (and surgeon's!) patient stories to get a good feel for both good and bad outcomes. Give yourself plenty of time to let the information "sink in." You'll eventually find the "right" answer for you. |
That not my list, that is a list of doctors that participated in the clinical trials. You posted it, hence I called it your list.
I wasnt talking about free follow ups but the fact that an out of country doc cant see me next Tuesday for a follow up. A surgeon in NA isn't going to see you on that short notice either. Also getting doctors to follow up after someone whose done thousands of ADR implants? Why would you need a follow up if these doctors performed thousands of implants? Good to ensure everything is going on track. For me it was to make me feel at ease and confirm everything was healing as per normal, I'm sure there are tons of reasons. Some people might not have the luxury of paying cash and then oh well, let me just pay again...I said the same thing in my post, and I agree when things go sideways it is a bad scene but often this is preventable by doctor and device choice. A doctor like James Yue is one i would trust and the reason why is because of research. I don't much care if someone is a researcher since that doesn't make them a great surgeon. Those are different skill sets that may or may not overlap. Zeegers who is the so called pioneer continues to use the Activ-L. I agree that Zeegers is top-notch, but keep in mind that doctors often stick with what they know to work, sometimes to a point that is detrimental to the potential outcomes of their patients (e.g. Dr. Bertagnoli) An ADR is not a magic fantasy prosthesis that will cure all your back ailments. Was for me, but your mileage may vary :) I will quote again that Bierstedt looked at my MRI,listened to my complaints in NY city and told me my facets joints were good enough for adr. Lets also replace the slightly bulging one and make it a 3 for 1 trip. Like a FN oil change i was going in for...I have no idea of your story and can't comment, but I've never vouched for Bierstedt on this board. |
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The point im trying to make to the original poster is anyone thinking of going to Europe for an ADR has to do their due diligence.They need to research, research and then research all options again..Just because Joe Schmo had a successful 3 level ADR with disc XXX, doesnt mean **** and shouldnt mean **** to Joe. I won't go into the reasons why Zeegers uses and still believes in the Activ-L. I know why, but if someone wants to know thereis plenty of info on this site and on the internet.. The Activ-L being so close to FDA approval is a major step for back sufferers in the USA in my opinion. |
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Pete do tell the activ L Zeegers secret?? Financial? Is it really the best disc? It seems to fly under the radar compared to the m6 etc. I do know it works differently than any other disc.
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Boxer you lazy SOB...LOL
I will start you with just this tidbit http://www.adrsupport.org/forums/f51...ll-tell-12869/ I've also spoke to Zeegers in person and am in contact with a person who has had surgery with 2 activ L's. Again, you do your research and you make your decision.. |
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Lmao!!! I know about both discs I just got the feeling you knew something the rest of us don't. It's kinda like the rumor of this special new m6 for L5-S1 that someone mentioned even though I can't find anything about it.
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I agree to disagree on the value of people stories here. Of course research is important, but looking at patient outcomes is INVALUABLE research, and in fact it is one of the primary benefits of a site like this, and people shouldn't overlook that. |
I don't really mind the hijack. The whole point of these threads is to discuss options and share knowledge and opinions that help people evaluate options and make decisions.
Personally, I have family connections in the medical research arena so I'm aware how much the available information can lean towards marketing (seems much worse in the pharma world than low volume ADR, but still) so I find more value in the stories people share of their own experiences. And while I agree that getting new device options in the U.S. is huge, my point was that it is more of a beginning than an end. It will take years for local doctors to get enough experience before I personally feel comfortable with it. Given the level of bulging in my last MRI, I'm worried that I'll end up with an emergency fusion before the new devices are generally available. Regarding the Activ-L trial, has anyone seen any research abstracts or conference presentations from any of the PIs in the trial? It would be useful to have more visibility there. |
AZMnman,
Very similar story here. DDD of L4-5-S1. Can function (walk, do minor things wiout pain). Sitting hurts. Can probably wait, and wait and wait. Questions is - why? Your back will not get better, and so will not mine. It will get worse. I am also looking at autofusion if I wait too long. |
the new implant that is in the end of the FDA study is the AxioMed Freedom Lumbar Disc. the FDA is running the study comparing the Prodisc L against it. 2016 is what i heard the study will be finished. the AFLD works identical to the SK M-6 except it is all one piece. I talked to Dr. Pettine, and he wants to use a Coflex on my L5-S1. since it looks bad, herniated and pressing on the left sciatic nerve, it hardly ever bothers me. so i'm waiting to see what happens with this study. like the M-6, the FLD has a cervical counter part, that isn't in a study yet.:)
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AxioMed Freedom lumbar and cervical discs
Please if you haven't heard of this company or the disc check them out. if you like the M-6 or the Mobi-C they are worth at least a look at.:sus::jacks:
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That's the company. my voc-rehab counselor's husband had the prodisc-l installed and it caused fractures of the vertebral body and had to be fused. the disc is still in him and still hurts at the site, the nerve pain is better now that it is fused. now his neck is going and there is talk of fusing, just like me as we have the same Dr.s. i told his wife about this site, everything i have read on the net, and there are options here or overseas and it isn't as hopeless as it feels.
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Update 2023:
(I had a whole post and my session timed out and I lost it, so "take 2") I've been out of the loop here but glad to see this helpful community is still around. I thought I'd reply to help others see how things change over time and this really is a long journey. To recap, my primary problem was periodic (3-4x/year) disc ruptures followed by intense, debilitating pain for a week or 2 each time. I decided to delay surgery (either ADR or fusion) as long as I could. So I kind of checked out of these forums and tried my best to get on with life. On the "good" side, the intense pain I used to get has subsided and I haven't experienced the old cycle of "annular tear/protein release/nerve inflammation that lasts a week or 2" for a few years now. I think my disc is pretty much a dried up raisin at this stage so there's no more juicy protein center to leak out anymore. This is interesting because it shows that my old problems were really almost entirely inflammation from the protein and not direct impingement of nerves. On the bad side, that's been replaced by a progressively constant duller pain, with occasional but shorter lasting sharp pain if I move wrong, and lack of mobility/activity. I'm scheduling another round of imaging to confirm but current indications look like my problems are almost entirely L5/S1 facet joint at this stage. So NJ Gene had great advice in 2015, just a few years early for where I was at on my journey. I'll likely be pursuing facet joint injections & nerve ablation, hoping to keep delaying surgery. Surgery is the only real "fix", but if I can reduce the pain & restore some mobility, I hope to be able to keep living the life I want without surgery for a bit longer. |
Wow, thanks for posting. It was eight years ago when you first posted! I hope you figure out the next steps, and work towards a solution. :wiggle:
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yeah, I had a couple really bad episodes 8 years ago, but for multiple reasons decided to try to hold off on surgery. Recent years have been "better" in that my pain isn't completely debilitating, but worse in that it is more chronic. I guess it reached the point where status quo just isn't working anymore.
Reading your link about the M6 durability kind of reinforces some of the reasons that I held out. I hesitate to say that, because I mean no judgement to anyone who opted for them - we all have very individual experiences and decision criteria. But at the age I was 8 years ago, I was more worried about device longevity. (I'm still a bit worried, but have 8 fewer years on the clock to worry about now.) Any major developments that I've missed? I'm digging into the research again. Maybe I just haven't found them yet, but to be honest, I expected to see more recent studies. |
AZMtnman, I've not kept up with the ADR technology like I once did - 15 years ago. Even though I started this site in 2004, I've moved on to other things in my life. It's a long story!
Anyway, keep us posted. What's the latest in your research or searching for doctors? |
My local doc isn't a fan of ADR. If I get to that point and want to pursue ADR I'll likely need to find another practice. But a fresh MRI doesn't really show much worse degradation of disc height or bulge from 8 years ago so it's likely my current problems are facet-based.
Next step is injection therapy. It's probably going to be some months of trying different injections to see what works and for how long. And if that doesn't help they would likely recommend facet surgery before fusion or ADR. |
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