Questions, concerns - at wits end

[ianG]

Greetings everyone,

I recently found this site and all the information I've been pouring over has been really helpful. I had never even heard of disc replacement until fairly recently when a friend of mine returned from Stenum Hospital with a new disc in his neck and now he has his life back again.

I have some questions and concerns, but first here's a little background on my condition:

I'm 39 years old and have had some form of daily pain and/or pressure in my low back for my entire adult life. I was diagnosed with a sacralization in my early 20's and an undersized disc at L5 and a slight bulging disc at L4/L5. A new MRI performed recently showed the same bulging disc. As I get older the pain has only increased to the point where I'm now considering surgery. I know sacralizations aren't uncommon (approx 5% of people have some form) and this condition in and of itself doesn't always cause pain, but in my case it seems to have contributed to the problem.

I'm very active, commute to work on a bicycle, goto the gym 3-4 times a week (lots of core work), race motorcycles and try not to limit myself, within reason of course. Things I can't do usually involve high-impact or twisting activities, like running, basketball, skiing, etc.

Being stationary is what affects me the most. Sitting and standing for even brief periods is difficult. I'm a graphic designer, so unfortunately sitting is part of the job, but I'm out of my seat every 15-20 minutes to move around. My pain is nothing compared to what I've read on this forum from some people, but the cummulative affect of 20+ years of constant pressure, tightness and sharp pain has me on the edge. And in the past few years I've been experiencing problems in my legs as well, primarily my left leg. I get tingling, numbness and at times it feels like a rope is tied around my upper thigh cutting off circulation.

The radiologist who reviewed my films said I wasn't a surgical candidate, but he couldn't explain to me why the pain is constant, so he wasn't very useful. I've been researching ADR to the point where I understand the risks involved and have a clear understanding of what recovery might be like.

What I'm curious about is why some of you have chosen the ProDisc over the Maverick. It seems like these are the two most popular options for lumbar disc replacement, but why have so many on this forum elected to use the ProDisc? I've been in communication with Stenum and they have been very helpful. They seem to think the Maverick is a much better option.

I've exhausted all non-surgical options over the years. Everything from chiropractic, to bio-feedback, to electric accupuncture. You name it I've done it. So surgery has always been a last resort, but as I head into my 40's I can't stomach the thought of another decade with this problem.

I've broken a lot of bones over the years (none in my back), so I'm no stranger to rehab or painful recovery, but my greatest concern is that I come out of a surgical procedure worse than I entered, and to be honest, that scares the crap out of me.

Anyways, thanks for humoring me and taking the time. Any and all responses are greatly appreciated.

- Ian

[Alastair]

You have answered your own question, you tell us that you are very active and certainly all the sports that you do are probably way beyond what you would be capable of doing if you had disc replacement.

Stay away from surgeons, and enjoy the quality of life that you do have.
Best,
Alastair

[ianG]

All I can say is it's amazing what you can get used to. I've spoken with people with far more serious problems then I have yet they still push through the pain and manage to be just as active if not more.

I don't mean to minimize my problem. I get 2-3 hours of sleep a night unless I take an Ambien, then it's 4 if I'm lucky. I'm forced to lay on my back everyday under my desk at work for about 30 minutes and my back is at the forefront of every decision I make. A night rarely goes by that I'm not leaning back onto a very large ice pack and contemplating the pros and cons of becoming addicted to pain meds. Yes, I'm fairly active, but that's in spite of my problems. For every one thing that I can do, there are 10 things I can't.

I've exchanged emails with a couple people who have had disc replacements and they are now snowboarding, horseback riding, and otherwise leading pretty regular lives. I don't know if this is normal or they are the exception, but it's worth exploring.

Originally Posted by Alastair

You have answered your own question, you tell us that you are very active and certainly all the sports that you do are probably way beyond what you would be capable of doing if you had disc replacement.

Stay away from surgeons, and enjoy the quality of life that you do have.
Best,
Alastair

[dantij]

I have to agree with Alastair. It seems like you are still leading a very active lifestyle. Why risk it? Stick to the core training. My story is somewhat similar to yours but as time passed by, I no longer was able to do the things that were part of my daily/weekly routines. The first thing I had to give up was basketball, followed by weight lifting , and eventually it got to the point that I was missing work (telecom tech), sometimes for two weeks at a time. I won't ramble about my history. If you are interested it is here for you. My disc of choice is Flexicore. So far it has worked out good for me. Good luck with your decision. We are here for you.

[phylly]

Hi IanG,
I like you had tried all conservative treatmentfor several years. I did not go into surgery until I was almost bedridden most days and had to give up work and my life. Pain meds did not help at all at that point and my discogram was positive at two levels. I chose to get two ADR's. I continued to be in pain after in my leg although my back pain was better. Then I had a decompression surgery for the sciatica which may have undone me. You can also read about me. I can't go back but I did not get the result I wanted. I am in constant pain again and can no longer do any activities. I will probably need to fuse my ADR's but am getting opinions regarding this. I agree with many posts here, be careful about surgery as it does not always go well.
Phylly

[trucklt]

Welcome to the forum. This is the place to get the scoop on ADR and other options.

I'm not sure exactly what "sacralization is." Have you had any other diagnostic tests besides an MRI? Before fusion or ADR, you should have had a discogram, and diagnostic facet and nerve root injections in order to pin down exactly what is the pain generator in your spine. Also, most surgeons want you to have failed at least 6 months of conservative therapy such as physical therapy and epidural injections. Some people (like myself) have mild-appearing disc bulges and tears that can be extraordinarily painful, and others have terrible-looking MRIs but no pain.

Without your physical conditioning you would probably be in a lot more pain. I'm a bit older than you (50) and I can tell you that your symptoms will likely only increase as you get older. I did have one surgeon tell me that I should wait and perhaps when I get older (didn't say how old), maybe my pain level would peak or actually decrease. Easy for them to say!

I think that a lot of drs. like the Maverick because it's an all metal deisgn and you don't have to worry as much about it shedding plastic debris as it wears down. Also, the Maverick has a more posterior center of rotation that might be easier on the small facet joints at the rear of the spine.

There are a lot of links posted to studies of the efficacy of ADR and fusions. "Berry" is a nurse who posts regularly and she can direct you to journal articles that will help you make an informed decision.

Good luck and keep posting your questions.

[Adrienne]

I have a 'sacralization' too...and some Docs said that since the sacralized level doesn't move, the disc above it takes the brunt of the pressure. One surgeon told me that he has people in their 30's who come in for degeneration in the adjacent disc. It must be like a fusion in that the level below is immovable.
Anyway, they couldn't find anything wrong with my spine until I had a discogram, which showed that the disc above the sacralization was torn wide open.
Some are still debating the relevancy of this finding to my back/leg pain but most think it plays a part.
Have you had a discogram to test the disc above the sacralization? Might be worth your while.

For better or worse......If I hadn't had a discogram no one would even be considering me a surgical candidate. My spine films look fine.

Good luck!

[annapurna]

I have to be the competing voice here. Laura finished a 204 mile bike ride in a day, (Logan, UT to Jackson, WY for those who are familiar with it) and climbed Grand Teton the month before she was diagnosed with DDD. Her pain level increased quickly but it was the comparison with her age (early thirties at the time) and her pain level that prompted us to look for surgical options when it became clear that non-surgical options wouldn't do it. She was incredibly fit when she went into surgery and ended up walking over thirty miles in the week after her lumbar ADR surgery she recovered so quickly.

Surgery isn't something to be blindly avoided but each individual needs to weigh their own risks the way they see them. ianG, I'd encourage you ask more and learn as much as you can but I'd tell you to choose surgery or not depending on how you feel about the risks when you understand them. Too many of the doctors you'll see will look at your activity level and refuse to treat you without understanding that your problems are affecting other areas and limiting your life in ways they aren't asking about.

To answer one specific question, Prodisc and Charite are more common on the board because they're older ADRs and have been approved for use longer. Come back in a few years and you'll see more Mavericks. There really hasn't been a study that shows that one ADR is conclusively better or worse than any other. The recent information about metal vs plastic wear particles seems to suggest that either leads to problems, just different types of problems.

[tconner94]

I'm sorry about your situation. As you can see when you peruse the information on the site, your situation is all too common. Indeed, your story is almost exactly my story. I am heading for ADR in two weeks, but it was not an easy decision, and I'm still not 100% sure that it's the right one.

I wanted to give one bit of advice. You stated that your radiologist told you that your condition was not a surgically treatable one. DO NOT rely on the opinion of the radiologist reviewing your films to determine whether or not you would benefit from ADR, fusion, or any of the many other procedures available. This decision should be made by you and a qualified surgeon (orthopedic or neurosurgeon) who is trained to treat lumbar spine disease. I doubt that the radiologist took an extensive history from you or did a comprehensive physical exam.

Even the best subspecialty trained radiologists don't have the background, training, and experience necessary to make that call. Most radiologists will categorize surgical disease as a single disc rupture with direct nerve impingement, and everything else gets lumped into the broad "non-surgical" category. Trust me, I'm a radiologist.

Find a good surgeon (or two) and get opinions.

[Cirobi]

Hi IanG and welcome to the forum.

I can't personally comment on some of the conditions you mentioned as background info because I'm not familiar with them. However, I'm going to have to agree with Alastair on this one. It sound like you are still extremely active so your condition isn't an extreme limitation (yet). While living with some level of pain is not an ideal thing, it's not impossible and it doesn't sound like your quality of life is all that limited (unless I missed something in reading your post). Do you feel like you're actually being limited by your pain and just being active by stubbornness alone or is the pain/discomfort just an annoyance at worst currently? (I was this way at first)

Just to give you a frame of reference (and I apologize if it rambles as I'm fairly wordy), the only reason I personally went through with surgery was because I was no longer able to enjoy an active life. I spent the majority of my time sitting because generally that was the only comfortable position. Doing any kind of core stabilization exercise or even just walking for too long left me very sore for days and I found that I could no longer sleep in no matter how exhausted I was because after a certain number of hours my back would be hurting too bad to stay laying down. I was taking more and more pain pills and absolutely miserable because I wanted to get back to being active but my back kept reminding me why I'd become a slug in the first place. Heck, I didn't even really pursue seeing a doctor about it until my back really went out after just using the restroom and again after all I did was bend slightly to spit out toothpaste the one morning. When those incidents happened, I was in so much pain nothing was comfortable - moving, sitting, laying, standing, everything hurt.

I was only 25 when my back finally gave me the ole "f u!" but knew based on how I felt physically that surgery was a possibility down the road. How long, I had no idea and it wound up being shortly after my 27th birthday that I went in for the disc replacement. I had already tried conservative measures and in a way had been trying conservative measures for nearly a decade before my back really gave me an extreme level of pain to the point where I felt like I was a cripple well before I thought I should feel that way.

As for the disc brand - I have also read the back and forth on the different disc types commonly used, but I didn't really have a choice. I'm sure I could have requested something different had I felt any brand had an edge, but I didn't really feel that way going in and knew my surgeon was proficient with Prodisc and had a many years worth of successful outcomes from this brand of disc. Plus, I wanted as much of this covered by my insurance as possible and my surgeon's office knew prior to even getting the claims set up that Aetna would approve the one level operation I had. I was so emotionally beaten down by the pain I had been enduring that I also was at a point where I felt like just getting even one decade of relatively pain free life was going to make me happy.

Now, don't let this or anything here scare you away from considering it. I'm really glad you found this forum because there's such a wide variety of situations that folks have experienced and tons of very helpful people. Take the time to research it and ask as many questions as you come up with no matter how silly they might seem.

Hope something in my babble helped.

~Sara