Hello, new cervical case
 

Hello,

This is my first post to this forum so I'm not sure how it will be taken and I sure don't want to create anxiety for anyone with an existing ADR but I have some questions/concerns regarding ADR. I had an extruded disc at C6/C7 and moderate bulging C5/C6 diagnosed on MRI in December 2016. I was recommended by the first neurosurgeon I saw for C5-C7 fusion but cancelled the surgery as symptoms improved and eventually went away by March 2017. After some return of symptoms in July, my new MRI showed improvement of the C6/C7 when compared to the totally blown status it had last MRI so I'm not in a rush to get surgery and my symptoms aren't wrecking my life. I am having some return symptoms after a few months of left arm stingers, pins and needles and mostly left scapular pain but it's much better than last December when I was having severe left tricep weakness, numb fingertips and extreme pain.

Anyways, I saw my new (2nd opinion) neurosurgeon again today for some input, he recommended a 2nd epidural injection after the first one I got in August but I also asked him about surgical options in case this thing doesn't continue to improve for me. He suggested disc replacement (Mobi-C) for both levels might be an option for me. He's done 8 or 9 two-level mobi-c installs just this year. I asked him about the lifespan of the disc and he said it couldn't be known for sure but that based on hip/knee prosthetics he felt probably 15-20 years. This is a huge concern for me at age 39 because 20 years isn't that long and that sounds optimistic to even say 20 years seeing as the hip/knee people are usually elderly and don't move all that much anyway. I'm very very active. He said if it "wears out" that it could then be converted to a fusion. I asked him what that entails and it didn't sound promising, sounded more like they would just fuse the thing into the bones without removing it or at least not the metal plates since that'd probably take some serious chiseling and they would be hard to remove safely. Considering he's in his 60's I doubt he'd be the guy I'd be coming back to if the core wore out and flattened so what does he care right? (I'm being pessimistic here)

This guy came highly recommended and has a good history, yet seemed to not really have a long-term answer on how well this would go for me even if the short term results (5-10 years) might be great. Is there anyone here who has an ADR that's more than 10 or 15 years strong that is still doing great? Has anyone been told that they can expect the prosthesis to last their lifetime? I'm just really skeptical based on the hip/knee replacements since they're made out of some of the same materials, even if they do have to handle a heck of a lot more load than a cervical disc because I'm hoping to be able to do sports/running/lifting etc. with this thing. I worry that if I'm going to ultimately choose between ADR and ACDF it would be based more on long-term results and the hope of not needing another surgery. I'd almost rather take my chances with an ACDF than end up with a "messy fusion" being necessary in 15-20 years with an ADR. Any thoughts from the people in this community?

Once again I realize most of you have or are contemplating ADR so I'm not trying to create a sense of anxiety about it. I've seen the short term results and they look amazing. I just want to make sure this would be a good long-term decision when compared to ACDF, which also seems to have at best a pretty mediocre long-term track record.

Retracting my concerns
 

After a 3rd opinion from one of the highest regarded spine specialists in my area and then reading the wear rate tests on the Mobi-C I think I've answered my own questions. It sounds like removing the disc really wouldn't be that big of a deal since they often shave bone etc. when doing fusions and installing discs. This Dr. felt that removing the end-plates wouldn't be all that complicated anyway but that he's never had to do it with any long-term patients of over 10 years because they're not having any problems. The wear-rate tests posted on the FDA website are a lot more thorough than I had initially imagined and I can't see one of these discs wearing out in just 20 years, if ever, considering the beating they put these things through just to get an almost insignificant weight reduction to the core. I think the neurosurgeon who I had seen that suggested only 15-20 years of lifespan had simply not done much research or thought into it and threw out the hip/knee implant response because he simply didn't know. I feel pretty comfortable now going with ADR should the stronger symptoms of my disc-herniation return yet again.

RedLava,

I had my ADR in 2004 and my Charite' is holding up exceptionally well. With regard to revising ADRs, it's not a cakewalk, even for experienced surgeons by any measure. Has it been? Sure. How many times? I lost track -- it may be in the thousands by now.

For cervical ADRS, I would expect them to last a lifetime -- even for a younger person like yourself. Of course, you would have to be the perfect candidate and free of other disease(s) that would not contribute to further degeneration.

Hey, add a siggie please:

https://www.adrsupport.org/forums/sh...ad.php?t=11053

Just so you know, I'd consider that opinion to be really good evidence that this isn't the doctor you should go see if you ever have to have revision surgery.

Well placed ADRs done in surgeries by competent surgeon in patients who's conditions warrant and ADR have lasted well beyond a couple of decades in the lumbar, where loads are expected to be higher than the cervical. Mind you, though, there's a lot of caveats in that sentence that can come back to bite you in the butt.

Harrison, thanks for your reply. It's nice to hear that those lumbar discs are holding up so well and yes I would expect that the cervical discs would last even longer but my situation is slightly complicated in that I'm hoping to also return to Brazilian Jiu-Jitsu which I'm still currently doing and involves a lot of neck squeezing, rolling etc as well as running and weight-lifting so the lifespan of the disc is something very important to me. I'd hate to think that I'd have something in my neck I'd have to constantly worry about putting extra "mileage" on and wearing it out that much faster. AnnaPurna are you suggesting that you've heard or know of major difficulties in removing artificial discs that have worn out? The guy I talked to didn't seem to be suggesting that it would necessarily be a cake-walk, just that he was confident it could be removed should such a situation occur and that even removing it from the bone growth that locks them into place wasn't really a major problem since they often remove/shave portions of bone when doing surgeries. I got the feeling he had never actually had to do it or he would have said so, but that given the number of discs he's installed (40-50 Mobi-C's and several hundred others such as the Pro-Disc) that he wasn't all that worried about the disc wearing out either way. We were just talking worse-case scenarios.

There have been a number of revision surgeries reported or discussed here. I don't think that a single one was easy. Also, if I remember correctly, most of the revisions were performed by fusing around the existing ADR rather than removing it.

I admit that I was offering a flip comment but revision surgery isn't simple and someone who thinks it would be is likely not knowledgeable enough about it to actually do it now. I hope for your surgeon's other patients that he does a little more research about revision so he can understand the seriousness of it and doesn't give false reassurance for a position of ignorance.

AnnaPurna,

Thank you for the information. I'm now reading some of the stories from the surgical revision forum and agree it sounds more problematic than I would have expected. That's a little disappointing but it's better I know the truth about these risks I guess. Should I need surgery I really can't decide which would be the safer choice between ACDF and ADR. All roads seem to lead to a fair number of horror stories.

It is my belief that most ADRs are stronger than the natural anatomy. The real risk is natural anatomy and misplaced ADRs. As for durability, these things seem rugged. As for jujitsu, I know a couple fellow M6ers who roll on mats, both cervical and lumbar. They go hard too.

Truism: There are horror stories for any procedure you look up.

Addendum: The horror stories spread faster and further than the tales of success, which leaves one to feel amazed that there are any good results out there at all.

This is a pet peeve of mine so please forgive my rant. I'll try to keep it short. Anecdotal information, like what you get from reading stories here, is horrible for forming a real picture of your chances for a good or bad result. Bad results are discussed and occasionally distorted and re-reported as if they were a new, different, bad result. Good results are often not reported at all because the patient is out living their life and not commenting on this board. Yes, there are a few of us that continue to post years later. I feel like Laura and I were led to answers beyond what we could have found on our own and we're simply paying back the good that was done on our behalf. That's why we're still here.

I can't tell you how to perceive risk. The statistical evidence I've heard suggests that the likelihood of a complete recovery to full functionality for a ACDF patient is lower than for ADR. I don't know this but I suspect that the likelihood of a well-emplaced ADR is lower than a well-fused ACDF but the functionality of a patient with a well-done ADR is much higher.

Functionality after a decade is still debated. At first, ADRs were touted as having much high patient functionality after many years. The evidence seems to still support that but emplacement mistakes and poor designs have clouded the data enough so it's a murky mess. If you chop out all of the "bad" data, ADRs seem to come out ahead. It's just arguing over what gets included and what doesn't, e.g. do you include Rich and Laura as "good" patients who have an obsolete lumbar ADR design but reject those patients who had it and did poorly because the design did have some flaws? That's commonly referred to as cherry picking data; statistical shorthand for lying.

Basically, do you roll the dice hoping for a really good outcome with an ADR or accept a less good outcome with a potentially lower chance for a really bad outcome? Remember also, you can affect your odds by surgeon selection and very careful discussion of your condition. Many of the not-so-good ADR outcomes were with patients who were borderline for getting an ADR at all. If they knew then what we know now, they would have at least understood the risks, if not have made different decisions.

Thank you for that input Drewrad, it gives me hope. I feel like every time I talk to anyone at my current gym they're under the impression that should I need spine surgery, it would basically be the end of my 5 1/2 years on the mats. I know 2 guys from a previous gym who had fusion surgeries. One was a C5-C7 two level fusion on a guy in his early 50's and the other was a single level fusion (probably C5-C6) on a younger guy in his late 20's. The older guy just took a bronze in Vegas last weekend at a tournament and when I used to roll with him, I didn't even know he had an ACDF when he was trouncing me all over the mats. When he heard about my neck trouble in December he gave me a reference to the doctor that did both of their fusions, so I'm pretty confident I can get a good job done with fusion should I need one from that particular surgeon, but I'd still like to consider my options as neither of these guys have gone past the 5 year mark yet and who knows what the future holds for them. Also, it's not just the surgeon but the patient case that can affect the outcome. I've never broken a bone in my life, I have no idea if I'd have any kind of bone growth problems or anything like that.

AnnaPurna, this is EXACTLY what I have been trying to contemplate for the past few weeks. I get the feeling that ADR is generally better and statistically superior, at least in the short term (5-10 years), but my worry is that in the much lower chance of it going south some day, I'd probably end up with a really lousy fusion and all kinds of problems and would be wishing I had just gotten an uncomplicated fusion with mediocre to good results. Yet, looking at the overall statistical data, that complication rate is just as high if not higher with even uncomplicated fusions, so it seems like that roll of the dice for ADR with the odds clearly in your favor are worth it. Of course I've also contemplated minimally invasive cervical foraminotomy as a possibly low risk but mediocre outcome. Two of the three surgeons I've seen said they thought I would not be a good candidate for that surgery since my flare-ups involve actual neck pain and I also worry it would be like a band-aid fix that could make my spine unstable in the long-term and ultimately result in fusion or ADR anyway. The 3rd guy said he wasn't sure if that would be an option but that since he wasn't an expert on foraminotomies he would give me a referral to a guy that is to take a look at my MRI and see what he thought....should I need it. I guess all of this is a moot point right now. My symptoms coming off the Prednisone cycle are back to almost nothing other than micro-stingers in my left arm and still that very minor tricep weakness, so I'm not going to opt for surgery until the symptoms at least return in force and possibly after trying one more epidural injection. I just want to make sure I have an absolute back-up plan on what I want to do assuming it all comes back in another few weeks or months again, which sadly seems likely. Sorry if I sound a little flakey, but it's been a rough year and this whole thing is driving me crazy :)

Two comments: First, I don't know what your flare-up to no pain cycle time is like. If you're having random, unprovoked or flare-up from things related to your everyday life, my suggestion is to continue working on what you'll need to do to make your decision about surgery. The next flare-up will be easier to tolerate and life will be easier to live if you know that you know what you're going to do surgically when you make the decision to do it. At the least, I'd suggest continue working on finding a surgeon you like and understanding how you see the risk/rewards stacking up for ADR vs. ACDF.

The story I remember is when Laura decided to get her L5S1 Charite. We'd spent months working through what surgery to get and who to pursue for the surgeon. Laur was in pain but functional. After we made the decisions, she was still functional. One day mid-Summer, she drove up at home after work and needed assistance getting out of the car and up the three steps into the house because the pain had flared. Because we had pursued a European surgeon, we woke up at midnight (8am in Germany) and had a surgery date and plane tickets by 2am. Laura slept a lot easier through that flare-up knowing that she simply had to deal with pain for a few weeks until the surgery.

Second thought: My opinion, which needs to be tempered with the knowledge that I'm an engineer not a medical professional, is that the gamble is a little different than you depicted. Typically, if you get off the surgery table after your ADR surgery and know that the ADR was well placed and do well within the first year, most people have no long-term problems with the ADR. Charite's are over 30 years old and there's still no major news items out there for the first Charite's failing and being replaced (Rich aka Harrison, Laura and Sir Alastair all have Charites so there's reason for the senior members of this board to look for posts like that). With fusions, it seems to go the opposite direction; you can have a good fusion for the first decade then start having problems from what it had been doing to the mechanics of your spine.

I agree that for my mental health it feels better with the idea of having a plan in place and that's why I still visited 2 surgeons even with my pain currently minimal. I'm still just a tiny bit on the fence deciding between the 2 that were Mobi-C trained. One of them is an orthopedic surgeon listed as a top guy on Becker's Spine review, has a lot of online reviews, showed up on an NBC clip etc. talking about sports and spine surgery. The other is a local neurosurgeon that my doctor highly recommended but he's also in their hospital network so I take that with a little grain of salt. He doesn't have a ton of reviews online, I can't find much background information and I don't think he specializes in only spine surgeries though he has a much longer wait time to see him than the first (2 months vs 2 weeks). I think he treats a lot of serious brain/nerve disorders as well so that might account for the longer wait time. He said he's done about 8 or 9 Mobi-C 2 levels surgeries in the past year. The first guy said he's done about 40-50 total and hundreds of other ADR's before that. Between the two of them the first guy was all confident, "no big deal" attitude about it and the second was a little more reserved, suggesting I try more conservative care first (a 2nd injection which I don't see the point), but also felt a little more honest about possible complications, even suggesting after I asked about disc lifespan and heterotopic ossification complications he kind of changed his tune on ADR and said maybe fusion would be the right choice for me if I'm worried about those. He was also the guy that scared me into thinking ADR would only last as long as a hip replacement. The first guy when asked about ossification basically said they're rare complications caused mostly by poor surgical technique when shaving the bone. He didn't think the disc would likely wear out in 20 years either but couldn't be certain. Though he seemed a little overconfident in the results, he wasn't pushy about doing surgery either, saying my condition appears to be stable and I don't "need" immediate intervention to prevent spinal cord damage but that it's more of an issue of how much I want to try and manage my life around these problems and give up doing things that I enjoy such as physical activities just to avoid the flare-ups. He also suggested only doing the one level C6-C7, because my C5-C6 is stable and A-symptomatic though every other surgeon I've seen has suggested doing both levels with either ADR or fusion so that it doesn't cause problems later. I'm leaning more towards the first guy since he seemed to be one the highest reviewed and regarded spine surgeons I could find in this area that does ADR with the Mobi-C.

Howdy Red, great thread. I'm in a similar boat . My original symptoms have subsided a great deal, though I've recently picked up a new one - a slight limp in my right leg.
Have zero pain, and very slight tingly finger (left hand) and fingers (right hand).

Since my symptoms don't significantly impact my life I'm really on the fence about rolling the dice with a surgery. Seems there is a very high percentage of patients who would repeat the procedure knowing what they know after the fact (90%+). There are no guarantees of course.

Good idea to get a surgeon lined up should you need the procedure on shorter notice - I've kind of been blowing that off. You've also motivated me to ask about epidural injection, perhaps that would give me some relief as well.

The surgeon (only 1 so far last year) I spoke with wanted to go ACDF over ADR as he felt it was the "more conservative option", but was happy to refer me to ADR guys if i wished. I see online he now does ADR also. I should probably get a second MRI and see how things are progressing.

Hi Woodypaint,

Yeah I've decided I'll just let the symptoms dictate the decision. If the symptoms come back again in force and I can't do the things I like to do (running/grappling/lifting) then I'll just schedule the Mobi-C surgery for the 1 level and go with the good odds. I'm pretty confident I've found one of the best ADR surgeons in the Chicago area. I'm tired of not doing the things I like to do out of fear it'll cause a flare-up. It's been 9 months since the initial rupture and I originally gave it 3 months "rest" and after my flare-up 4 months later I rested again for 3 weeks, but it didn't even seem to make much difference the second time around. It was only the injection & Prednisone cycle that turned it back off. I think the next serious flare-up I'm probably jumping off the fence and into the surgery room. I could try another injection and hope a few more months heals it but as this gets closer to a full year since it originally started I'm starting to think it is what it is.

Well this sucks and I think I'm reaching a breaking point. I'm flaring up again with the same symptoms that started this whole thing just a lot less than the original rupture. Left scapular area is burning and when I look up for more than a few seconds it burns worse. The stretches I've been doing for 2 weeks without problems are just inflaming it worse at this point.

I'm getting some mild intermittent numbness and tingling down the left pinky finger side of my hand. I think the cortisone shot I got a few weeks ago is wearing off fast and I got off the prednisone that was also controlling it 2 weeks ago. My GP told me I can't live on prednisone. I'm completely torn but thinking I may call the surgical scheduler tomorrow. It's been almost a year since this started and I don't think this damn C6-C7 disc is ever going to truly heal. I feel like I'm nuts to have surgery when I'm not in horrible pain or dysfunctional but at the same time I can't imagine just living like this for the rest of my life either. It burns when I sit down without leaning back, or drive for more than 30 minutes, it burns when I look upward, it burns when I do various physical activities and even worse when I stop. I can't even swim because my "frog-stroke" involves looking up while floating and it burns then too.

I described it to my wife today it's like having a permanent bad sunburn. By that I mean it doesn't feel so horrible that I can't function or do what I want but at the same time everything I want to do I have to gauge it against how bad it's going to make me feel. If anyone is reading this, I know surgery is my own personal decision but do any of you who have had surgery for far worse symptoms think I would be nuts to roll the dice on the surgical route with a one level mobi-C for just these symptoms?

It's not so much the severity as the length of time that I've been dealing with this. I feel like regardless I'm going to end up on the surgery table at some point anyway I may as well do it before it is truly wrecking my life or causing the same unlivable symptoms I dealt with for a month back in December. I still haven't regained all the strength in my left tricep, maybe 80% but it's stuck there. I don't know what to do. My wife sees me running occasionally, she sees me grappling/BJJ a few times a week, she sees me lifting weights a few times a week because I don't want to lose whatever fitness level I worked so hard to get, but I get the feeling she figures if I can do that, it must not be that bad and thinks I should take a long time off as if it would heal in that time but I did that for over 3 months already and while it did get better it never went completely away and now it's back again.

I'm trying so hard not to make a selfish decision that would put my family at risk if I had a bad outcome but I feel like I'm running out of options. Ugh, I'm a complete mess. A part of me almost wishes it would just get so bad that if I risk the surgical route I can know with certainty that I simply had no other choice. Otherwise, if it does go south with a surgery I'll always wonder if I could have just sat on a couch for 6 months and not have needed to do it.

You should stop doing BJJ asap, now and probably forever. Your spine is one of the most important things in your body. Why risk hurting yourself even more?

I see how that might appear to be the right answer to some but I've been doing it over 5 years and I don't go that hard nor do I generally do "stand-up" or take-downs with anyone and I don't compete either. It's something very important to me. For that matter it doesn't seem to be the source of my problems as I usually feel a little better from the movements and muscle use. Both my general doctor and every surgeon I talked to felt it was something I could continue to do once I get the right treatment. To be honest, running a few miles and especially jumping causes me more flare-up problems than BJJ ever does. Lifting weights seems to be more of an issue too. What am I going to do? Quit every physical activity that I enjoy and sit on a couch the rest of my life because that would be good for my health?

At the risk of a flip answer: you should retain a much fitness as you can and make a decision about your long-term solution.

I'm not going to push you into surgery. The approach you wish to take is your own but delay isn't helping your prospects for a successful surgery, of whatever type you choose to have. I'd argue that as soon as you see a steady decay in your capability and health, it's time to make a decision about surgery. That decay will speed up and slow down over time, but it's really unlikely to see that decay stop and not continue without some kind of external intervention.

It's also easy to miss the decay when you think about acute events but you need to think about how many things cause flare-ups. More now than earlier? Do the flare-ups last longer? Do you need to rest more or longer to recover? Does the pain-free time between flare-ups seem to be getting shorter? It might take a talk with your wife and a calendar to see if the two of you can plot when your flare-ups had occurred to make some guesses about whether you're holding steady or getting worse over time.

If it helps, I had to help Laura with that talk for her L5-S1 because she'd gotten so caught up in dealing with the problem and addressing the pain that she'd lost sight of how bad she'd gotten over the year between diagnosis and ADR surgery.

Well, I'm not entirely sure how to answer those questions. My original rupture in December was terrible. I had weakness, numbness, extreme pain and pins and needles. It went away almost completely until a couple months ago when I got the first "flare-up". Right now is not as bad as either of those. I'm not losing strength and I don't have consistent numbness. But the nerve pain in my scapula just keeps burning mild to moderate throughout the day. It's hard to gauge because I got that injection that shut it all down and then back on prednisone a couple weeks later when I started getting the burn again. Now I've been off all medications for 2 weeks and sure enough it's back. It's just pain mostly, like a nerve burning feeling down my left scapula that likes to occasionally burn down my arm and make my pinky finger side of the hand tingle. I wouldn't say it's getting worse, it's just that it seems permanent without meds. My second MRI actually showed improvement at that level but that was a comparison of August versus last December when it was awful. Oddly enough I got a call from the pain management doctor this morning (never had a doctor call me) who was asking how I was doing and suggested getting another injection in a week. She said generally it takes a "series" of injections to really work well. I'm not sure I buy into that logic, I don't see how cortisone is going to actually "heal" anything and if it hasn't healed on it's own in a year what difference would a few more weeks or months make? I went ahead and scheduled it because it's very important to me that I at least tried every other avenue offered to me first, but I'm not very optimistic. I think it's just going to give me another few weeks of freedom and I'll be in the same exact situation in a month.

One thing I forgot to mention, in your response you mentioned what things are causing flare-ups. From what I can see it isn't a particular activity that causes flare-ups for me, they just prevent me from doing anything physical because it burns. The cause of my re-flare-ups are simply being off of anti-inflammatories. When I'm on them I can do everything and I don't feel any problems. As soon as the medications stop then after a few days I could be doing nothing but resting and the problems start coming back without the meds. I took 3 weeks off all physical activities during that flare-up in July and the 3rd week was actually worse as far as burning pain than the 1st one until I finally got fed up and started taking the medications they had prescribed which shut it all down.