New here - ADR scheduled for 2/21/2011 - looking for advice!

jasonwidup · #1 04-05-2011, 04:42 PM

Hi group. I have to say that this forum has already helped me immensely and I really hope to get some good replies to this post.

My signature says most of where I'm at. I'm 34 years old with a wife and two kids. I've had back pain most of my life and occasionally would throw my back out, but it would recover within a few days. In 2007 that wasn't the case. I was playing with my daughter - picking her up and throwing her on the couch - and my back popped. I fell to the ground and couldn't move for 6 hours. Finally after I couldn't even stand to go to the bathroom we went to the emergency room.

The excruciating pain went away a few weeks later but I wasn't the same. I tried managing the pain over the summer with pain meds and physical therapy. Finally in the fall I started getting worse - I woke up one morning and could no longer walk upright (I could bend 90-degrees and walk as that would take the pressure off the nerve). Within two weeks I had a diskectomy and laminectomy surgery. My surgeon said it was the largest hernia he had ever removed in his 16 years of practice. This completely helped with my nerve pain.

I started physical therapy several weeks later but my PT was braindead. He kept telling me how great I was doing and how I was recovering faster than he expected. Then boom - nerve pain again but on the opposite side. Tried injections this time to get the hernia to recede but nothing worked. In March of 2008 I had another diskectomy on the same L5/S1 disk but on the right side instead of left. This left me with maybe 10-15% of my disk left.

Since the last surgery I have never been the same. I have been on some type of pain medication these last three years and have tried everything I can get my hands on, including facet joint injections, physical therapy, naturaopathic medicine, etc. For a while I would go thru phases of pain but as of February of 2010 it has been constant, debilitating pain. I wake up in the morning in the worst possible pain and it does get slightly better as the day progresses; however, that's only while using some type of pain med. I can't do anything physical like snowboarding, wakeboarding, kayaking, soccer, golf - all the things I used to enjoy. I can do them (and still do), but the pain is awful and I pay for it for 2-3 days afterwards. I am missing out on a lot of things with my kids, helping my wife around the house, etc. The only good news is that I am an advertising consultant so my job is very flexible and requires no use of my back whatsoever - thank god for that!

In late 2010 I got fed up and started looking for alternatives. I came across the Axiomed Freedom disk clinical trial and reached out to the research staff. In early February I was entered into the study and I have my surgery scheduled for April 21st with Dr. Delamarter. I still am not 100% convinced I'm going to have the surgery, and that's why I'm here now. I am looking for support and suggestions from all of you who are going through or have gone through the same thing I'm going through.

Here are some pros that I see:

I've seen several orthopedic surgeons for second and third opinions. All of them agree that due to my disk situation I will need some type of corrective surgery in my lifetime.
I almost don't qualify for the study because of how close L5 is to S1 - they are pretty much sitting on top of each other.
Every single one of my other disks are perfect right now - so I don't want to fuse because I risk tearing those apart.
My insurance will not cover an ADR surgery, so this is a perfect opportunity to have a trusted surgeon perform an expensive surgery for me with no cost.

The things bothering me are:

I feel like I can sort of live with the pain using pain medication on a daily-living basis, but pain medication doesn't fit well with my lifestyle and I don't want to have to rely on that the rest of my life. It also seems that one med will give me relief for several months, but then its effectiveness goes away and I have to find something new. Also, anything other than daily living causes me a lot of pain (can't even go to movies any more because sitting is too painful)
It's not life or death - so if something goes wrong during the surgery I will always ask myself "why the hell did I do that"?
There is some question as to the health of my facet joints. One ortho told me I will still have facet pain after the surgery.
I am an analyst in my day job so I tend to overanalyze things - I can't make a decision based on data alone and that is tough.

What do you all think? I know it's all based on personal opinion, but that is why I'm here. For those of you who dealt with similar decisions as I am dealing with, what was it that ultimately led you to having the surgery? How did you decide that the potential benefits from the surgery outweigh the risks associated with it?

Thank you all so much!
Jason

Harrison · #2 04-05-2011, 08:02 PM

Jason, really nice introduction and summary! Your analytical nature and experience should serve you well in your next steps. One question: why have you experienced back pain most of your life?

jss · #3 04-05-2011, 08:16 PM

Jason,

Congratulations on making at least some kind of decision. You have quite a story and if I wish that I knew what would be best for you. I do congratulate you on trying to avoid fusion; there is no doubt that would plague you for the rest of your days; requiring a second surgery, and then a third, and then ... until your spine was fused into a 2x4.

The best that I can do is say that I think that you've made an informed decision that seems very sound. From a survivor of surgery at four levels, please keep us updated.

Good luck, Jeff

annapurna · #4 04-05-2011, 09:27 PM

Quote:

Originally Posted by jasonwidup

The things bothering me are:

I feel like I can sort of live with the pain using pain medication on a daily-living basis, but pain medication doesn't fit well with my lifestyle and I don't want to have to rely on that the rest of my life. It also seems that one med will give me relief for several months, but then its effectiveness goes away and I have to find something new. Also, anything other than daily living causes me a lot of pain (can't even go to movies any more because sitting is too painful)
It's not life or death - so if something goes wrong during the surgery I will always ask myself "why the hell did I do that"?
There is some question as to the health of my facet joints. One ortho told me I will still have facet pain after the surgery.
I am an analyst in my day job so I tend to overanalyze things - I can't make a decision based on data alone and that is tough.

What do you all think? I know it's all based on personal opinion, but that is why I'm here. For those of you who dealt with similar decisions as I am dealing with, what was it that ultimately led you to having the surgery? How did you decide that the potential benefits from the surgery outweigh the risks associated with it?

My wife and I are both engineers. You think you overanalyze, you should have seen us.

To appeal to your analytical nature about your first question: Which direction is your life trending? Are you holding level with what you can do each day? Are you able to do less week to week? If you had to push it one day, do you recover slower each time? Those are the kinds of questions that we asked about Laura's first lumbar spine surgery. She was slowly but steadily going downhill with less ability to function each week. It made sense that the steady slide downward would drive us to serious action to stop it.
You'd also have to ask how far away you are from the worst surgery can leave you. That's the bottom line worst case risk. Laura was far away from that point when she got the surgery but close enough to see what her life could be like with a failed surgery.

I'll take your second point and amplify it: there will be a time, no matter how well your surgery goes, that you'll take a downturn and you'll need to tell yourself that you did the best you knew how to do. That downturn could be from simply overdoing it one day but, if you're not mentally prepared to defend your decision to yourself and the naysayers in your life, that minor bump will tear you apart. Make your decision and do what you need to have those reasons ready to defend that decision when it comes time to defend it. Your emotional health will take a beating during the recovery, not that it hasn't already, so you're going to need a plan to deal with that.

Facet pain is a big question mark. People with bad facets have improved with ADR; people with good facets have had them go bad with ADR. The best way to stack your deck is to make sure you know their condition before surgery and do your own research about what that conditions means about your chances.

As for the decsion, we made decsion trees and logic flowcharts and used every decsion making aid we've encountered in a combined 30 years of engineering. Everything told us that there were too many variables and uncertainties to make a firm decision. At that point we listened to what we wanted to do and tried to decide what the cost would be if we guessed wrong.

jasonwidup · #5 04-06-2011, 11:53 AM

Thanks to everyone for your replies thus far. Annapurna, I really appreciate your thoughtful response. It's been the most helpful piece of advice I have received so far. Today I'm going to start going without pain medicine so that I can truly get a sense for where I'm at and what I can handle with no intervention. I'm also going to see a few more doctors between now and the 21st to continue gathering more information. This seems like one of the most difficult decisions I've ever had to make - it's definitely not easy.

MarkH · #6 04-10-2011, 12:11 AM

I had the Axiomed disc installed on March 29 of this year and think it was the correct decision for me. My surgeon was Dr. Nunley at the Louisiana Spine Institute. I'm just starting the recovery period, so any advice that I give you is premature.

I can tell you though that previously my legs didn't really feel like they were mine. It was like there was a large section of pain at L5-S1 that made a disconnect that made them somehow not my possession. The pain and twinges were getting constantly worse, and I firmly felt that I was at a turning point where I had done all that I could through conditioning and exercise, yet things were still getting worse year to year.

My recovery from surgery feels like just that, a recovery. Every walk is a little better, every time I roll out of bed is a little easier. I need to stress that I am very early in my recovery, and have not suffered a significant setback yet. At worst I have distraction pain running down my right leg that reminds me of a leg trying to cramp while swimming. Near constant teenage "growing pains."

I debated the decision of ADR for about 2 years after dealing with pain for 5. My turning point was when, fairly rapidly, the few physical activities I had left started bringing pain instead of relief. I'm single, have no children, adequate savings, and no debt, all of which were factors in my decision.

Take Care,
MarkH

jasonwidup · #7 06-15-2011, 04:45 PM

Hi everyone. Ok, so it's been 7 weeks since my surgery and I figured I'd come back and post my progress. Overall I'm doing really well. I was worried that I was a little behind the curve in terms of recovery but I really wasn't. I found out that out of all the pain meds I had available, it was Aleve that took care of my severe nerve pain going down my left leg. That tells me it was caused by swelling that was pushing up against my nerve (guess). And now after a few weeks of 2 Aleve in the morning I not longer need it at all - the nerve pain is gone!

What I will say is this - the deep, severe, chronic, low back pain that I had that prevented me from sitting for long periods of time or even lying flat on my back - that is GONE COMPLETELY. However, now that the bad pain is gone, I am now feeling my facet joints. Many folks warned me about this and I do have that pain. However, it is not debilitating and it's something I currently feel I can live with and possibly even make better. ANYONE HAVE ANY REMEDIES FOR FACET JOINT PAIN LIKE MSM, GLUCOSAMINE, ETC.?

So overall I am so, so happy I had this surgery! I feel like I can do things I couldn't do before like flying on a plane for more than 2 hours.

jss · #8 06-15-2011, 07:32 PM

Congratulations Jason! That's the kind of story that we like to hear. I've been told that lumbar surgery requires months of recovery. Maybe you'll be on the bicycle ... before you know it.