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  #11  
Old 09-06-2017, 12:10 AM
RedLava RedLava is offline
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Quote:
Originally Posted by annapurna View Post
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?
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
__________________
- 10/16 C6-C7 ruptured disc and C5-C6 moderately bulging disc confirmed on MRI in 12/16.
- Cancelled C5-C7 fusion surgery 02/17 due to near complete symptom improvement.
- Flare-ups of C6-C7 began again in 07/17.
- Considering C6-C7 Mobi-C replacement.
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  #12  
Old 09-06-2017, 10:40 AM
annapurna annapurna is offline
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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.
__________________
Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
Knee, Shoulder, Toe, Finger, Elbow Problems

Jim - no spine problem but lots of other fun medical challenges

"There are many Annapurnas in the lives of men" Maurice Herzog
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  #13  
Old 09-06-2017, 12:57 PM
RedLava RedLava is offline
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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.
__________________
- 10/16 C6-C7 ruptured disc and C5-C6 moderately bulging disc confirmed on MRI in 12/16.
- Cancelled C5-C7 fusion surgery 02/17 due to near complete symptom improvement.
- Flare-ups of C6-C7 began again in 07/17.
- Considering C6-C7 Mobi-C replacement.
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  #14  
Old 09-13-2017, 12:48 PM
woodypaint woodypaint is offline
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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.
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C5/6 and C6/7 herniation with some cord compression 1/2016
No pain, a little radiculopathy, 2017 a small limp
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  #15  
Old 09-13-2017, 11:56 PM
RedLava RedLava is offline
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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.
__________________
- 10/16 C6-C7 ruptured disc and C5-C6 moderately bulging disc confirmed on MRI in 12/16.
- Cancelled C5-C7 fusion surgery 02/17 due to near complete symptom improvement.
- Flare-ups of C6-C7 began again in 07/17.
- Considering C6-C7 Mobi-C replacement.
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  #16  
Old 09-25-2017, 02:37 AM
RedLava RedLava is offline
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Join Date: Aug 2017
Posts: 12
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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.
__________________
- 10/16 C6-C7 ruptured disc and C5-C6 moderately bulging disc confirmed on MRI in 12/16.
- Cancelled C5-C7 fusion surgery 02/17 due to near complete symptom improvement.
- Flare-ups of C6-C7 began again in 07/17.
- Considering C6-C7 Mobi-C replacement.

Last edited by Harrison; 09-25-2017 at 10:11 PM. Reason: added format breaks
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  #17  
Old 09-25-2017, 01:23 PM
c4c7 c4c7 is offline
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Posts: 30
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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?
__________________
C2-3: Mild desiccation with focal 1.5mm central disc protrusion.
C3-4: Unconvetebral osteophyte formation on the right with minimal foraminal narrowing.
C4-5: Focal 2mm disc protrusion which abuts the thecal sac and slightly abuts the ventral cord.
C5-6: Central right paracentral 2mm disc osteophyte fomplex. Abuts ventral cord with some cord flattening.
C6-7: Disc desiccation with broad based central 1.5mm disc osteophyte complex.
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  #18  
Old 09-25-2017, 04:35 PM
RedLava RedLava is offline
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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?
__________________
- 10/16 C6-C7 ruptured disc and C5-C6 moderately bulging disc confirmed on MRI in 12/16.
- Cancelled C5-C7 fusion surgery 02/17 due to near complete symptom improvement.
- Flare-ups of C6-C7 began again in 07/17.
- Considering C6-C7 Mobi-C replacement.
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  #19  
Old 09-25-2017, 04:53 PM
annapurna annapurna is offline
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Join Date: Dec 2004
Posts: 1,497
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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.
__________________
Laura - L5S1 Charitee
C5/6 and 6/7 Prodisc C
Facet problems L4-S1
Knee, Shoulder, Toe, Finger, Elbow Problems

Jim - no spine problem but lots of other fun medical challenges

"There are many Annapurnas in the lives of men" Maurice Herzog
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  #20  
Old 09-25-2017, 05:37 PM
RedLava RedLava is offline
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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.
__________________
- 10/16 C6-C7 ruptured disc and C5-C6 moderately bulging disc confirmed on MRI in 12/16.
- Cancelled C5-C7 fusion surgery 02/17 due to near complete symptom improvement.
- Flare-ups of C6-C7 began again in 07/17.
- Considering C6-C7 Mobi-C replacement.
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