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To ADR or Not To ADR...
Hello!
I'm a newbie here and very glad to have found this forum. It looks like I'm faced with what I consider to be a difficult and tough decision so having support from people that have been there will be critical for me. I'm a 39-year old male who, about a year ago, had sudden onset (no known injury) of severe lower back pain coupled with groin and leg pain and some tingling/numbness in my calves and feet. It's always been more pronounced on my right side vs. my left. I ended up in the ER one night it was so bad and the following week had my first MRI that showed DDD at multiple levels. To date I've tried PT and two series of ESIs in the L5-S1 space which seems to be where most of my pain is coming from. The MRI results showed DDD and facet arthopathy with dextroscoliosis and retrolisthesis at L3-4, L4-5, and L5-S1. Broad-based bulges were noted at L3-4, L4-5, and L5-S1. Canal stenosis was reported at L3-4 (mild) but L5-S1 showed the most severe DDD process. Disc dehydration, height loss, anterior spondylosis and endplate marrow change were all noted...honestly, half of that I'm not even sure what it means. There is a definite annular fissure at L5-S1 in contact with the S1 nerve root on the left side. What doesn't add up is most of my pain and symptoms are on the right so that's been very confusing for me but several Dr's have said, "It is common". I should also point out that some of this might be hereditary as a family member went through a bi-level fusion of L4-5, L5-S1 about 4 years ago. My first rounds of ESIs were done bi-laterally in Oct 2011 and I felt GREAT! I felt the best I'd felt in over 6 months and was so hopeful that would be the end of my misery. I was active again and loving life. However, after about 3-4 months my symptoms slowly started returning. While nowhere near the severity of the first onset of symptoms, I agreed to another round of ESIs in L5-S1 that did absolutely nothing. The pain management specialist referred me back to my neurosurgeon saying that since the last round of ESI didn't work, he basically had nothing else to offer. My daily pain consists of a sharp "bite" in my lower mid-right back at hip level along with varying degrees of groin pain, leg pain, and tingling in thighs, calves and feet...more on my right side as before. Daily pain ranges from 2-4 on a scale of 10 so just enough to be constantly on my mind and it’s far worse at night. Being in any one position for too long is agony and often I wake up in the night and have to take pain medication to go back to sleep. I saw my neurosurgeon this week (4/9/12) and in reviewing the fluoroscopy images sent to him by the pain management Dr that were taken during my ESI procedures, I said I’m pretty much bone-on-bone at L5-S1. He feels my pain is from two sources: the bones in contact with each other and then what’s left of the disc protruding into the nerve root space. He advised that at some point I’m going to be faced with surgery it’s just a matter of when. He recommended ADR surgery with the Prodisc-L. However, his feeling was as long as the pain is manageable and I’m able to work, I should hold off but I don’t want to be in pain at all. I don’t have a high tolerance for it and I don’t want to be addicted to pain killers…I already can tell I’m building a tolerance to them (Diluadid). I’m not able to be as active as I used to be with daily gym workouts, bike riding, hiking, etc. My job is becoming increasing hard to do as I travel extensively so sitting on planes for extended periods not to mention a lot of standing, bending, stooping and sometimes even crawling (I’m a computer network certification engineer) really makes the pain worse. Luckily I work from home when I’m not traveling so I’m able to lay down if I need to, take pain meds if I need to, etc. but when I’m traveling to customer sites, I cannot do that as I have to be “on” all the time. I’m quickly becoming more and more depressed by all of this especially now knowing that I’m faced with surgery at some point. I know I don’t want fusion at my age because I’m fearful of other levels above it having problems from the added stress placed on them. The neurosurgeon confirmed that possibility. I think it’s important to maintain as flexible of a spine as I can for as long as I can. The surgery sounds absolutely awful going in anterior and I’m wondering how people reached the decision to do it. Obviously pain and immobility are huge factors but I’m struggling with being at a pain level of 2-4 is it really worth putting myself through that. I know only I can decide that but feel I’m on the cusp of should I shouldn’t I. Part of me feels I should knock it out while I’m still relatively young (I’ll be 40 this year) but the other part of me feels like I should wait until I just can’t stand the pain anymore and am really seriously incapacitated by it. Conflicted… :confused: |
While it stinks that you had to hunt us down on the internet, welcome to the group!
I've always found the "on a scale of 1-10, how much pain are you in" scale very annoying to work with. For those with a higher tolerance for pain, we can rate pain a lot lower when an issue is more severe, so I'm not sure it's always the best measure to consider. It sounds like your L5/S1 is pretty much toast. Bone on bone for any level doesn't sound like such a great idea to push through in terms of putting off surgery, but everyone's situation is different. I'd recommend thinking closely about quality of life as well as the possible outcomes were you to wait, which your physicians should be able to describe a range of potential outcomes. Quality of life is a big part because if the pain interferes with any aspect of your life, you should consider how much of an impact it's having as well as how quickly a slide into greater pain you're having. The reason I say this is because some folks can and do sit at a low but constant level of pain for many years and it's more of an annoyance than a major interference. On the other hand, some may find that their pain level is increasing rapidly with severe bursts of pain. As a personal example, I spent a good decade dealing with an annoyance level of pain with my low back issues. I avoided certain activities that irritated it and even continued to do some of those activities with extra care knowing I'd just have to chill for a few days until the pain settled down. Then, I had a sudden episode of pain at work simply from standing up after using the bathroom and the pain level never really settled down after that. If quality of life isn't a major issue/concern yet, the range of potential outcomes of waiting from your physicians could be a good way to work through your decision. Like you said, you're not getting any younger and it is easier to heal the younger you are. This was why I jumped on the surgical option when my surgeon said my choices were to either decide between fusion and ADR for surgery or wait and let it get worse. Of course, I had already mentally prepared myself for the need of surgery someday thanks to an incident I had during high school running track time trials one year, so my surgeon saying that was just confirmation that I wasn't just being pessimistic or a cry baby about my back pain issues. Your physicians may say that you could go several years or longer at your current pain level, or they may say that what's level of the discs at levels being considered for surgery will deteriorate fairly quickly and you could end up with additional damage that may eliminate ADR as a surgical option. You're definitely right though... whether or not to get surgery is a big decision whether you're prepared for the possibility or not. Hopefully some of these suggestions will help in terms of your thought process in deciding. Everyone's situation is different and everyone's ability to handle such things is different. Good luck in your decision making and of course, the folks here will do their best to help! ~Sara |
Sara, nice post, as usual. Kurt, thanks for creating a signature. Let me know if I can help. In the meantime, pls carefully review the post-op topics, check out the search function too -- it works well. You probably read this topic already on risks and contraindications.
Hope we can befriend and support you during your struggles! :) |
One thing I'd add to Sara's post: what direction and how fast are you progressing? If you can feel that your capabilities fell off a cliff and are just getting smaller and smaller every day while your pain levels are shooting up, that might drive you to take action now compared to what you might do if your capabilities and pain levels have been more or less unchanging.
Another comment, obviously this board is ADRSupport not FusionSupport so you're going to see more people trending towards ADR over fusion. You have a lot going on in your lumbar spine; you might need to get a hybrid fusion/ADR or even multiple fusions to deal with what you have. There's a lot of information here and other boards about the risks associated with fusions and, though you'll have to look harder, the risks associated with getting an ADR when your back really needed a fusion. Don't be too negative about fusions until you talk with at least one but preferably several competent ADR surgeons and understand if ADR will work for you. |
Good point Jim...Laura?
One issue I've brought up so frequently involves the ambiguity of the cause of DDD. In my case the rate of degeneration was pronounced and rapid, due in part to what was likely Lyme disease. My L5-S1 deteriorated rapidly over one year. I was literally deflating to the point of autofusion; but somehow managed the pain and delayed the surgery. The degenerative process is poorly documented and elucidated for us patients, but I am pretty sure this will change dramatically over the ten years -- finally! Kurt, there are lots of fusion topics in the Spinal Roundtable and post-op forums. |
Kurt,
Condolences on your condition and welcome. I ditto everything that's been posted, there are a lot of very good and thoughtful words in there for you, and would add a couple of things... Periodically a poster joins here that has put off surgery until the last possible moment only find that that moment has passed. Some have lost their job, the ability to work, their health insurance, savings, and others have incurred permanent nerve damage. I'm not sure when "too late" is, but would encourage you to address this problem well before then; whenever that is. Welcome, and good luck, Jeff |
Thank you all for the information and advice. It sounds like I have A LOT to consider, not that I thought this would be an easy decision by any means. I hadn't actually thought about the DDD process and the fact that eventually it will be too late for ADR and I'll be very limited in my options so thanks for that huge piece of knowledge. I'll be interested to find out what my latest MRI shows since it's been a year since my last one. If the process is moving along rapidly, that may be a strong decision factor while I still have a job, insurance, etc.
I've started doing some research on devices realizing that my options are extremely limited in the US due to FDA approvals. Where can I find information about comparisons and benefits of each, success rates, failure rates, etc.? I've looked through the surgery forum but it seems most on there are recent in their experience with the various implants. Also, I'm still digging through all of the great information on here but is there a section that addresses insurance claim approvals, denials, etc.? I have UnitedHealthcare PPO and it's excellent insurance but have seen that for the Prodisc-L, it's not covered. My Dr said he could of course appeal but I'm wondering what that success rate is for UHC. Thank you all again for the information and support!! Kurt |
Hey Kurt you can slow down your progression of DDD by taking heavy doses of glucosamine. It's been shown clinically that for early degeneration glucosamine has reversed the degeneration while for the late degeneration,it didn't make it any worse or better. In other words, glucosamine inhibited the degeneration. 3 levels is pretty huge surgery. More than likely, your treating doc would consider fusion plus ADR. It makes no sense to get ADR at L5-S1 as you have no motion at that level anyways and there has been evidence that fusion at lowest level does not cause adjacent levelDDD.
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Thanks for the info. I'll definitely consider that...what's one more pill, right? :jump: The interesting thing in all of this is none of the Dr's that I've seen have been concerned about any other level other than L5-S1. I've questioned what the MRI report said but the two neuros I've seen have both said that at my age, a certain amount of "bulging" is normal. The other levels are not actually ruptured like L5-S1 and the discs are hydrated with normal height. I got my MRI results from Monday a short time ago. Not much has changed in a year but for some reason the neurosurgeon wants to see me back in the office. I have no idea what that's about but at least I'm armed with a little more information on ADR and some questions for him. |
Glucosamine and chondroitin sulfate supplementation to treat symptomatic disc degeneration: Biochemical rationale and case report
An excerpt: In conclusion, we discussed the scientific rationale behind the therapeutic use of oral glucosamine and CS against cartilage degeneration, and illustrated the possible efficacy in a case of spinal disc degeneration. Evaluation by MRI is relatively simple and without burden to the patient since the technique is nondestructive and no contrast agents are needed. Therefore, it is justified to conduct more definitive trials focusing on (disc) cartilage morphology, to unambiguously prove or disprove the beneficial affects of these supplements. An objective analysis method, MRI, as shown here could further add credence to such studies. Glucosamine and chondroitin sulfate supplementation to treat symptomatic disc degeneration: Biochemical rationale and case report |
Update:
I saw my neurosurgeon again this morning to review the latest MRI from the 9th. There hasn't been much change in the past year. He's encouraging me to go get more opinions but said in his mind, until I'm nearly disabled from this (i.e. no longer able to work, problems walking, etc.), to hold off on ANY surgery including ADR. While I appreciate that honesty, my fear is not being a candidate for ADR at some point because of the disease progression (L5-S1 is basically bone-to-bone now) and I really don't want to start down the fusion path at my age (40). Surgery is probably inevitable at some point given my family history of DDD and several members who have had to have at least 2 levels fused. In fact, the Dr told me this morning that it's probably inevitable unless I can "stick it out" until my 70s by which point L5-S1 will probably auto-fuse anyway.
While I certainly agree that I'm not disabled per se, being in some level of pain daily along with numbness and tingling isn't pleasant and at times it does affect me mentally/emotionally...it's draining. I'm still having a dilemma of trying to determine when it's "time" I guess. Being in any one position for too long makes things worse which means my sleep is disrupted almost nightly. That causes me to have to get up, stretch and many nights take some narcotics just to get relief so I can go back to sleep. Then I have trouble getting up and going in the morning because I'm in a "drug coma". Luckily I work from home when I'm not traveling for work so right now, that's manageable. The Dr has suggested going back to my gym routine (my "routine" right now consists of only walking) and if it hurts, stop. ??? Seems a little risky but perhaps better than nothing at all and maybe that will force a decision. Ha! Has anyone else been in this situation of not being completely incapacitated by symptoms but still faced with trying to decide if they should just proceed with the ADR? I'm scared to do it but also scared to not do anything if it means I can't go the ADR route later due to DDD progression. :confused: |
Kurt, it sounds like where I was in 2003 and 2004! I hope we can help you. If you can't afford the DVD that addresses many of these topics for pre-surgical patients, I'll send you a copy.
Good luck with your next steps, we are here for you. :wiggle: |
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Because there are so many variables that go into when and which surgery to have, unless one is incapacitated, it can be very difficult to know if or which surgery to have. Of all three of my surgeries the decision was easy. For the first one, my symptoms were probably much like what you're currently describing, but the MRI showed the spinal cord compressed to half its normal diameter. I have a quadriplegic in the family and another member that is disabled from waiting to long to have surgery, so the doctor didn't have to work hard to convince me that surgery was warranted. Loosing the use of my right arm prompted the second surgery, and then being incapacitated in pain prompted the third. This looks like a very good time to get all of your research done into the various treatments and what your insurance will cover. If you become incapacitated suddenly, like I was, the decisions will already be made and you'll be ready to move. Good luck, Jeff |
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I hope you are doing well now. Kurt |
The Surgical Decision ....
Kurt,
I can most definitely sympathize with your situation regarding the question of just how "bad" of condition / pain do I need to be in to decide to make the jump into surgery. I wish I had an answer or a helpful suggestion. I am sadly stuck in the same situation as to the confusion on what to do. I am fairly medically-ignorant, and feel so even more when I read how much so many others on these boards seem to know and understand about their own condition(s). I finally began my short-term plan of at least prepping for the possibility of surgery for me - quit smoking since Jan 13th 2012 and started getting some professional psychological help. Best of luck in whatever decision you ultimately make. If you find there is something specific which really helps direct your thoughts one way or the other, let me know huh? In the meantime, know that you are certainly not alone in struggling with this decision. Jeff |
3 Level M6-L L2-L5 Dr. Clavel 3/14/12
Hi,
Sorry to have to join in the welcome to the site:wiggle: I too have DDD. I do have a medical background, not sure how helpful that was to be honest. I did NOT want surgery, I had EVERY available treatment at least once, including an IDET. i had 3 surgeons, 1 neuro, 2 ortho all suggesting ADR due to the DDD and the potential for adjacent level disease that would occur with fusion. My only regret looking back is that I spent soooo much time trying to avoid the surgery. No one answer is the right one for everyone. However, I feel like a new woman. I am 6 weeks postop, I am walking 3 to 4 miles a day in ome mile segments, no problems. All the presurgical pain and numbness is gone and was since I opened my eyes after surgery. I unlike many on this site am just now finishing weaning off mynpain meds, but still could mot be happier. Whatever you choose the good news is you do have some options. On a negative Nellie, I also have UHC and they denied all the way through outside party arbitration. Still the best money I ever spent. Good luck on the search, read until you are comfortable and at some point I just took a leap of faith. Laurie |
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