I had a fusion to L5-S1 about 18 months ago and the pain I'm experiencing now is much worse than before the surgery. I had been having lower back pain for 2-3 years before I went to see a Neurologist for the first time. I saw him for 1 visit before he had me on the operating table, he told me I must have the fusion to relieve the pain. Well that did not work, he ask me if I was having pain down my leg or legs and I told him I had never had pain in my legs only my lower back. I did not do the research I should have before the surgery as I have now done or at least tried to do. It seems I can only find good thing said about this fusion and very little bad. It has as I said above about 18n months since the surgery and it has cost me just about everything I have, Before the surgery I has a job making $200k + per year. Now we are on food stamps and just barely getting by with all the other things. This doctor told me not to worry he had done many of these fusions and it would all go well. It did not go well, I was released from the hospital the very next day. I have seen at least 8 different doctors about this problem and once they hear the story they want nothing to do with trying to help me. The only thing that the doctor that did the surgery has done other than suggest more surgeries is give me lots of pain med's. I'm at the end of my rope and have no where to turn or know what more I can do. I have one more appointment with another doctor many miles away from where I live in East Texas, if he can't help me, well I guess that's that.
If there is anyone reading this post that has been though this type ordeal please let me know what you did and how. If there is anyone that can help us in any way I ask you to please do so. This is something I never thought I would go though all-though I do know there are people in much worse shape.
I beg for anything anyone can offer in any way, I must find away to get this pain to subside and soon.
Please!!!!!
Willie
First I will start with the practical tips because I've been dealing with chronic back pain for over 10 years now and I've done a lot of research and gone through a lot of conservative care treatments.
Based on your area, you may want to check out the Texas Back Institute.
You might benefit from chiropractic care and acupuncture. In addition, you need a physical therapist who specializes in failed back syndrome (post-surgery pain) and/or chronic pain management. If you haven't tried already, try pain management (there are clinics). Ultimately, you may benefit from a spinal cord stimulator or pain pump (medicates the spinal nerves directly).
In my own experience with low back pain, I have encountered the opposite problem. Everyone has scared me off surgery whether it has been the emergency room docs who treats me when I am too incapacitated to even crawl on the floor or my regular medical care providers. Spinal surgery offers three possibilities: You get better. You stay the same. You become worse. Essentially, you have a 1/3 chance that the outcome will favor you.
In my experience, most doctors who do not perform spinal surgery will tell you NOT to do it. Most people who do nothing but surgery for a living will tell you it will give you your life back. Honestly, the people I know who have had fusion surgery usually need more surgery. At best it buys you 10 good years, than the pain comes back and additional fusions may be necessary. Disc replacement surgery is relatively new, yet none of the artificial discs replicate normal spinal motion and if they wear out there is little that can be done but fuse the surrounding area (because these mechanical discs generally can't be replaced if they fail). In Europe, where artificial disc replacement (ADR) has been in use much longer, long-term follow-up studies have shown that a sizeable percentage of patients can end up worse off than they were to begin with (much, much worse). Everything I have learned points to the fact that spinal surgery is far less predictable than other types of surgery (including brain surgery).
The neurologist who has been treating me isn’t a surgeon and has taken a very passive approach to my care. Unfortunately, I am stuck because my injury was occupational and I am under workers’ comp medical. Meanwhile, my nerve conduction studies are showing more and more nerve damage as the years progress --- to the point where I can no longer walk my dog or shop alone --- yet my doctor refuses to fight the repeated denials of the (workers' comp) insurer. I haven’t even had an MRI on my spine for five years, going on six! In day-to-day life, even slight leaning forward, whether it is to brush my teeth, wash dishes or prep a meal can trigger such extreme stiffness and spasm that I am lucky if I can make it to the couch or bed to lie down (especially first thing in the morning).The financial cost of being disabled have been equally devastating.
In 2008 the company my husband worked for went out of business. He does not have a full-time job and can’t find one due to the economy. We have filed 600+ applications this year with no luck. When the car that he uses to get to his part-time jobs needs new tires or brakes or my tooth cracks, as it did earlier this year, and I have to see the dentist we have to charge everything on a credit card with no idea how or when we can pay it off. None of our friends or siblings have offered to help even though several of them earn six-figure incomes. Our elderly parents have been stuck with the burden of pitching in.
It has gotten so bad this year that we, too, are on food stamps. We Americans are very much enamored with "individualism". We don't have an it-takes-a-village mentality that says it is perfectly okay to help each other out. It isn't right for taxpayers to bear the burden that family should shoulder first. It isn't right that Americans who are hard-up in this economy or due to health issues have to risk their credit just to get by at the risk they will eventually default (and not by spending on toys, but just surviving). But I digress...
I can function in a semi-sedentary capacity for a few hours in the middle of the day if I don’t stand or sit too long at any one time. This is what everyone around me sees. They don't see me unable to get out of bed in the morning, doubled over and using my hand to lean on the wall or grasp door frames just to get back to the bedroom. I only go out when I can function and that's the only side anyone ever sees of me. Another problem with back pain is that most people experience it at some point or another. And since most pain suffers keep on working or doing what they had to do --- and oftentimes recover --- they assume everybody who complains of spinal pain can force “mind over matter”. They don’t realize that pain of this type comes in many forms and many degrees. And yet the mere THINKING that they know what you are going through is enough to make them second guess you and/or offer a bunch of trite advice.
I have been on Darvocet, Tylenol 3, Vicoden and, for the past 8 years, Ultracet. Bottom line with the doctors is that even though I have never even so much as drank (let alone dabbled in illegal drugs) they don't want to hassle with the triple-script prescription regulations. I earned two college degrees and pretty much lost my shot at the American Dream right out of college when the injury occurred. I have no kids of my own due to income loss and inability to run after or carry the little ones, regardless. The doctors I have seen can't or won't treat my pain properly to get me back to work. I was not advised on Social Security Disability by my work comp' attorney and didn't get approved when I applied years after the fact. I don't want to be "disabled" or "on the dole".
I want my life back.
I am sick of the state of medicine in the United States. So much focus is on the people who abuse narcotic pain relievers that those of us who need them can't get adequate care. I developed gastric erosions 10 years ago due to prescription NSAIDs that were prescribed to control my pain (Daypro, Naprasyn, Celebrex and other Asprin-type drugs). My stomach, to this day, has not healed. To make matters worse, I began breaking out in quarter-sized hives on my lips and hands and can't take the anti-inflammatory meds anymore. That leaves me with narcotics. Except I can't get anything decent to control my pain in that regard.
A lot of folks on these health websites know what you're going through and our hearts & prayers go out to you. But the absolute worst of it is when other people who don't have to fight this daily battle against chronic pain don't get it and are convinced that people like us have a character issue (malingerers/unmotivated/antisocial). They'll harp on "personal responsibility" or "just get a job", unable to appreciate that not all PHYSICAL maladies can be cured or even adequately controlled by "modern medicine". The second thing I resent is that due to drug abuse and incompetence in how people take narcotic pain relievers the FDA and others seek to strip pain-relief options away from legit chronic pain suffers even as they make doctor's lives a regulatory hell should they dare do what is right for the patient. I could go on and on but I won't. Life isn't fair.
The best any of us can do is take it one day at a time, one prayer at a time and keep up the good fight.