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    Old 04-28-2005, 08:02 AM   #1
    LilMomma
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    Reasons for chronic pain

    I've just recently started posting here and in reviewing some of the threads, it alarms me how many are here due to back problems. I also had back surgery two years ago, global fusion where they went in from the front and then flipped me over and took bone from my hip and then went in through the back. I've been in chronic pain since, the majority being from the bone graft site.

    So it got me wondering...just how many are here due to back surgery? And with so very many people living with poor outcomes from back surgery, it is disturbing that so many are still being performed. I'm sorry if this has been discussed here before. I haven't read through archived posts other than for specific searches.

    I'm just angry at times over my own situation. I'm in PM now and doing well but it is still extremely frustrating to have had such an extensive surgery only to wind up on pain meds indefinitely anyways. I'm very interested in hearing other people's experiences with back surgery to see if they are similar to my own. For two years, my surgeon made me feel like I was the only one to ever have continued pain afterward. It was only when I talked to three other people who had failed back surgeries that I finally saw the light and searched a few boards similar to this one that I found I was far from alone. It irks me that I was made to feel that way and suffered for two long years and for what? Because the surgeon didn't want to deal with me once he did his surgery and got his money? Or because he thought I just wanted the drugs? Or because he just couldn't admit that what he did was not helpful since that would be admitting that half his patients didn't really need the surgery that is his livelihood?

    If anyone wishes to share their experience with me, I'd really appreciate it. I have felt so alone for so long. I have great friends and my family is generally supportive but none of them "really" understand. It's nice to find others here who do!

     
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    Old 04-28-2005, 08:34 AM   #2
    Shoreline
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    Re: Reasons for chronic pain

    Hi LM, sory, I posted a reply to the wrong thread, But yes, I'm here after 3 failed back surgeries and docs with egos that an't admit when surgery failes.

    I've heard many people do experience pain from the ilac crest when used for Donar bone, But most lkely it has to do with the sourounding tissue and muscle layers since bone itself has no nerves or sensation. Myofacial release and scar management may be an option for this type of donar site pain. I also see more and more botox being used for muscle pain which may be worth investigating.

    The latest trend is using ribs as donar bone, Personally a rib resection sounds worse than shaving the iliac crest but I haven't donated a rib for any of my surgeries, I guess I have been lucky with both sides of my hips, my pain is back pain from failed fusions and broken hardware.
    Good luck, Dave

    Last edited by Shoreline; 04-28-2005 at 08:47 AM.

     
    Old 04-28-2005, 08:46 AM   #3
    LilMomma
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    Re: Reasons for chronic pain

    I think perhaps you were answering someone's else's post here but I am interested in this statment you made:

    "I say the window closes for succesful surgery because the longer you go without fixing it, the more likely the pain becomes engrained into the nerve tissue and many other changes occur when your pain moves from acute to chronic."

    Would you mind elaborating on that? I never knew that pain actually becomes engrained into the nerve tissue. So basically by letting my pain go out of control for two years, my surgeon did me more harm than good? And no, I'm not interested in suing him or anything. It just adds to my frustration. And what other changes do you mean? Anything I can understand more thoroughly about my predicament will ease in dealing with it.

     
    Old 04-28-2005, 08:48 AM   #4
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    Re: Reasons for chronic pain

    yup I goofed, check my correction, sorry about that.
    Dave
    Give me a minute and I'll copy some info about the differences and changes that occur from acute to chronic.

    Last edited by Shoreline; 04-28-2005 at 08:50 AM.

     
    Old 04-28-2005, 08:59 AM   #5
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    Re: Reasons for chronic pain

    Here is an excerpt that explans the changes and the process of chronic pain.

    Normal Pain Pathways
    Pain serves as an important alarm that warns us of threatened or ongoing tissue damage. The ability to sense pain keeps us alive and functioning. When that ability is compromised--for example, by diabetes or other causes of sensory neuropathy--the risk of severe tissue damage and debility is greatly increased.

    Tissue injuries trigger the release of chemicals that give rise to an inflammatory reaction that in turn triggers pain signals to the brain. These signals, in the form of electrical impulses, are carried by thin unmyelinated nerves called nociceptors (C-fibers) that synapse with neurons in the dorsal horn of the spinal cord. From the dorsal horn, the pain signal is transmitted via the spinothalamic tract to the cerebral cortex, where it is perceived, localized, and interpreted (Figure 1).

    This complex nociceptive system is balanced by an equally complex antinociceptive system (Figure 2). Pain signals arriving from peripheral tissues stimulate the release of endorphins in the periaqueductal gray matter of the brain and enkephalins in the nucleus raphe magnus of the brainstem. The endorphins inhibit propagation of the pain signal by binding to -opioid receptors on the presynaptic terminals of nociceptors and the postsynaptic surfaces of dorsal horn neurons. The enkephalins bind to delta-opioid receptors on inhibitory interneurons in the substantia gelatinosa of the dorsal horn, causing release of gamma-aminobutyric acid (GABA) and other chemicals that dampen pain signals in the spinal cord.

    Spinal interneurons release dynorphin, which activates kappa-opioid receptors and leads to closure of N-type calcium channels in the spinal cord cells that normally relay the pain signal to the brain. Following the release of enkephalins, spinal cord cells release other small molecules, including norepinephrine, oxytocin, and relaxin, that also inhibit pain signal transmission.
    Enkephalin is particularly notable in that it binds to delta-opioid receptors that are selectively exposed on nociceptive nerves when they are actively transmitting a pain signal. These receptors are usually localized on presynaptic vesicles containing neurotransmitters. After the neurotransmitters are released, the receptors are incorporated into the presynaptic cell membrane. Active nociceptors thus become more sensitive than inactive nociceptors to both endogenous and exogenous opiates, which may explain how certain opioid analgesics relieve ongoing pain without impairing the ability to sense the pain caused by new injuries.

    This natural pain-relieving system may be as important to normal functioning as the pain-signaling system. Because of it, minor injuries such as a cut finger or stubbed toe make us upset and dysfunctional for only a few minutes--not for days, as might be the case if the pain persisted until the injury completely healed. We are thus able to cope with life's daily pains without constantly suffering. But just as disorders of the pain-sensing system can give rise to illness and dysfunction, so can disorders of the pain-relieving system. Fibromyalgia, a condition that many clinicians consider to be factitious, may be one example of a debilitating disease caused by antinociceptive dysfunction.


    Chronic Pain Pathways
    Chronic pain is not just a prolonged version of acute pain. As pain signals are repeatedly generated, neural pathways undergo physiochemical changes that make them hypersensitive to the pain signals and resistant to antinociceptive input. In a very real sense, the signals can become embedded in the spinal cord, like a painful memory. The analogy to memory is especially fitting since the generation of hypersensitivity in the spinal cord and memory in the brain may share common chemical pathways.

    Activation of NMDA Receptors. The main neurotransmitter used by nociceptors synapsing with the dorsal horn of the spinal cord is glutamate, a versatile molecule that can bind to several different classes of receptors. Those most involved in the sensation of acute pain, AMPA (alpha-amino-3-hydroxy-5-methyl-isoxazole-4-propionic-acid) receptors, are always exposed on afferent nerve terminals. In contrast, those most involved in the sensation of chronic pain, NMDA (N-methyl-D-aspartate) receptors, are not functional unless there has been a persistent or large-scale release of glutamate. Repeated activation of AMPA receptors dislodges magnesium ions that act like stoppers in transmembrane sodium and calcium channels of the NMDA receptor complex. The conformational change in the neuronal membrane that makes these receptors susceptible to stimulation is the first step in central hypersensitization (Figure 3) and marks the transition from acute to chronic pain.

    Activation of NMDA receptors has a number of important consequences (Table 1). Because activation causes spinal neurons carrying pain to be stimulated with less peripheral input (a phenomenon known as windup), less glutamate is required to transmit the pain signal, and more antinociceptive input is required to stop it. Endorphins and other naturally occurring pain-relievers cannot keep up with the demand and essentially lose their effectiveness. So do opioid medications at the usually prescribed dosage. The clinical implications are clear but underappreciated--inadequately treated pain is a much more important cause of opioid tolerance than use of opioids themselves.


    Table 1. Results of NMDA-Receptor Activation
    Normal
    Windup
    Reduced opioid effects
    Neuropathic
    Injury discharge
    Hyperalgesia
    Allodynia
    Reduced opioid effects
    Inflammatory Neuronal responses
    Hyperalgesia
    Reduced opioid effects (time-dependent)

    Long-Term
    Gene induction
    Novel neurotransmission
    Cell death
    Pain memory
    Reduced opioid effects

    Adapted from Dickerson, 1994

    Activation of NMDA receptors can also cause neural cells to sprout new connective endings. This neural remodeling can add new dimensions to old sensations. The emotional component of pain may be increased, for example, if the new connections channel more of the pain signal to the reticular activating system of the brain. When that occurs, the signal's pathway into the cerebral cortex is more splayed and the pain signal more diffuse and difficult to localize.

    Neural remodeling may also precipitate the destruction and loss of cells. Some of the brain damage that occurs during strokes is believed to be caused by the torrents of glutamate released from injured presynaptic cells, which overstimulate NMDA receptors on adjacent postsynaptic cells and effectively burn them out. The same phenomenon may occur in parts of the spinal cord receiving persistent pain signals. There is also evidence that NMDA receptor activation can stimulate normal apoptotic mechanisms. Although some of the details have yet to be elucidated, the data obtained thus far suggest that chronic pain is a destructive process that requires timely treatment in order to limit the damage that it causes.

    Activation of NK-I Receptors. A further effect of NMDA-receptor activation is that it causes nociceptors to release the peptide neurotransmitter substance P, which binds to neurokinin-1 (NK-1) receptors in the spinal cord. Activation of these particular receptors amplifies the pain signal and also stimulates nerve growth and regeneration. It is thus interesting to note that the one chemical abnormality repeatedly documented in controlled studies of patients with fibromyalgia syndrome is an elevated level of substance P in the spinal fluid.

    In animal models of chronic pain, substance P binding to NK-1 receptors induces production of the c-fos oncogene protein, which in many respects can be regarded as a biochemical footprint of chronic pain. The presence of c-fos protein in spinal cord cells is a marker for central hypersensitization. At first, it is detectable in afferent spinal cord cells actively receiving pain signals. With persistence of the pain, the protein spreads to progressively higher levels of the spinal cord until it eventually reaches the thalamus, at which point the pain is virtually untreatable.

    This model explains why patients who have had uncontrolled pain for months or years often find that their pain has spread beyond the originally affected organ or dermatome. In these cases, physicians who are not familiar with the concept of neural plasticity are apt to conclude that the pain is psychogenic, because it does not conform to their preconceived map of the nervous system.

    Afferent Becomes Efferent. Although most of us were taught that neuronal cells transmit signals in only one direction, either towards (afferent) or away (efferent) from the brain, we now know that many neurons can carry signals in both directions. With the prolonged generation of pain signals, a dorsal root reflex can become established. This is a pathologic condition in which afferent cells in the dorsal horn release mediators that cause action potentials to fire antidromically (i.e., backwards down the nociceptors). When this happens, packets of chemicals located at the peripheral terminals of these cells are released. Among these chemicals are nerve growth factor and substance P, which is not only a neurotransmitter but also a potent inflammatory agent. Nerve growth factor increases the excitability of nociceptors. Pain signals from peripheral nerves are thus heightened, and the cycle of chronic pain is continued (Figure 4).

    The entire article is here.
    [url]http://www.hosppract.com/issues/2000/07/brook.htm[/url]

    Sorry bout the goof, Dave

     
    Old 04-28-2005, 09:43 AM   #6
    LilMomma
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    Re: Reasons for chronic pain

    Wow, interesting read. Thanks for sharing that, Dave.

    I'm sorry you have pain. I still have some back pain, too, and I also have hardware. I know the hardware isn't broken, although one plate was slightly bent on one of my more recent x-rays, but I've read some instances where the body just rejects the hardware and people have to have it removed. How does one know when that happens?

    I swear, in all that time I was going back to my surgeon with pain at my graft site, he never once mentioned any other treatment options other than cortisone injections, which only helped for short periods of time. I received cortisone injections every three months for about a year and a half before I wised up. He actually acted stumped by the fact that I had ongoing pain there, yet I've found so much on the Internet suggesting that MANY people have ongoing pain at donor sites. In essence, I feel like I wasted two years of my life in pain because I was naive enough to trust my surgeon (who was highly recommended in every way). I've since seen a neuro doc who told me that the huge surgery I had wasn't even necessary. Anyway, that's all water under the bridge at this point. Can't change the past now. I just want to move forward. I'd love to find something that stops the pain so I'm not dependent on Avinza for the rest of my life (I'll be 36 next month so I've hopefully got a lot of life left).

    I guess I just wish my surgeon would have been a little more upfront with me in terms of surgery results. I've certainly seen some people with good results from surgery but it seems the majority do not have positive outcomes. I truly felt I would be better after surgery. Had I known there was such a big chance that I wouldn't be any better off pain wise, I might not have opted to go through such a large surgery!! I was in the hospital an hour away from my home for 7 days, away from my children who were 3 and 8 at the time. My 3-year-old thought I died so I had emotional repercussions from that because he wouldn't let me leave his side for months after surgery fearing I wouldn't be back. I lost too much blood during surgery and had to have a transfusion and I also developed pneumonia and ended up in ICU. It was a pretty rotten experience and to have gone through all that only to feel like I'm still at square one is pretty darn exasperating. (Not to mention I own my own business and have had to turn down prospective clients because I simply can't do the work)

    Thanks for listening! Sorry to ramble on so. On the bright side, I am finally seeing a PM doc who really listens to me and has me on meds that finally make my life "doable". I'm not 100% pain free yet but I'm still in the titrating phase so I now feel that I will at least get close to that.

     
    Old 04-29-2005, 02:52 AM   #7
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    Re: Reasons for chronic pain

    I have had three back surgeries all with hardware the last front and back and donor graft like yourself. I am in horrible pain daily and havent worked for two years. This is why I tell everyone with back problems DO NOT HAVE SURGERY!! If you think your pain is bad now wait till after mine is worse and I know others with severe walking problems etc.
    You are definetly not alone
    I wish you well
    Lisa
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    Old 04-29-2005, 06:01 AM   #8
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    Re: Reasons for chronic pain

    Lisa...I just have to chime in here. I don't think it's fair to make a blanket statement that folks shouldn't have back surgery, period! Each case is so individual, isn't it. I've had 8 spine surgeries and each one has relieved my suffering to a certain extent. The chronic pain I feel now is very different from the original back pain I felt when I had my surgery and isn't directly connected to the fusions. But I can see how folks who have had major surgery without a good result or with a worse result than what they started with could feel the way you do. However, I think to say any surgery is bad surgery is to take away an option that can really be a lifesaver for many back sufferers. Kathy Mac

     
    Old 05-01-2005, 02:35 PM   #9
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    Re: Reasons for chronic pain

    Lisa, I'm sorry to hear that you still have pain. I really feel for you (literally!).

    As for telling people not to have surgery, I don't think it's a bad idea to let people know what we've been through if they are considering surgery. The surgeons usually don't go into that side of it and I feel people deserve to know that there are an awful lot of people who come out of surgery not doing a whole lot better. However, I prefer to tell people to get a second and even third opinion before diving in. I also tell them to see a neurologist as well as an orthopedic surgeon. There are so many variables following back surgery. Patients need to be informed!!

    For example, I was told my outcome should be wonderful. I wasn't informed about the possibility of chronic pain at the donor site. Also, I still have some nerve pain in my legs, although that is somewhat better after surgery, and was never told that was a possibility. The surgeon's nurse gave me names of people to call (former patients) but of course all of those patients had positive outcomes. I just believe people deserve to know the cons as well as the pros before having surgery of any kind. They did go over risks but those were mostly related to the surgery itself (such as increased blood loss, pneumonia, etc.). I wish I had known beforehand that there was a possibility to have continued pain. At least I would have been prepared for it. I had such high hopes...I couldn't wait for my wounds to heal so I would be near normal again only to have continued severe pain two years later. That's extremely disheartening and depressing.

    Following my surgery, amidst the continued pain and the frustration over my surgeon only wanting to give cortisone shots and not really understanding exactly how much pain I was really in, I went to see a neurologist. That doctor told me that from looking at my MRI, etc. from before my surgery, my problem was moderate and could have waited for surgical intervention. Neurologist also said that the problem could have been fixed in a much easier fashion than the surgery I went through. I believe the term was "you were butchered" ... yikes! I cried when I left that office. That's when I started searching the Internet and found that there were indeed other options. I was so silly to just jump into surgery. I believed in my surgeon and trusted him, partially because he was so high recommended and partially because I had worked for him in the past. I should have gotten second and third opinions.

    In summary, I don't believe in telling people definitely not to have surgery. I've known people to have good results from surgery. However, I urge, urge, urge them to get many opinions first.

    Sorry...I'm kinda rambling. I just wonder, though. If we took a poll of everyone who has had back surgery, how many had good outcomes vs. bad ones? And in retrospect, would they have had the surgery knowing they would possibly still have pain as severe as before surgery?

     
    Old 05-01-2005, 07:02 PM   #10
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    Re: Reasons for chronic pain

    Hi LM
    Well Here is my story, I had lami disc in my early 20s and then the next level at 29 ish and still with pain the docs said oh your fine no probs just live with it. Finally by 33 I had Lived with it for 12 years, had a fusion with hardware the 360 like you. MY back pain went away....the problem came from the extensive nerve damage from the first surgeries when it SHOULD have been fused but "i was to young" so i lived with it to the point that the nerve damage has left me with irrev. nerve damage and now on these mes... I tried the SCS last month but it DID interfere with my fusion somehow and although it helped the leg and hip pain i was having this unexplainable back pain around my fusion area, so my doc said no way. I am having a neck fusion in a few weeks, in the midst of all this my neck got hurt doing NOTHING last easter (2004) and I am slowly losing more use of my arm so I have no choice and I have great hopes and just know that this is going to be a great outcome I have had enough bad ones it is time for a good one.
    So you are correct alot of people end up with PM after back surgery I just hope the one coming up is different.
    It is amazing to see how young everyone is also . I am not even 35 yet. so
    i still think that is young
    Good luck to you.

    Last edited by myspine; 05-01-2005 at 07:03 PM.

     
    Old 05-02-2005, 12:29 AM   #11
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    Re: Reasons for chronic pain

    I have no experience personally with back surgery...though my neighbor has had surgery twice. Also, my hubby has refused surgery for the past 15-20years.

    Anyway, the point I wanted to make is that people who have great outcomes from back surgery(and I'm sure they are out there) are not going to be posting on these message boards looking for support. I don't know where you go to find these people with good outcomes because they're out there leading normal lives!
    It would be good to talk to these people..I wish my husband would hear both sides of the story...all he's heard is the negative.

    ~Mush

     
    Old 05-05-2005, 09:43 PM   #12
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    Re: Reasons for chronic pain

    Myspine, yes, I think 35 is still young, too. I'm 35 and I feel like I'm 60 most days! Good luck with your neck fusion! I have some trouble with my neck, too, and I'm just praying I never need surgery there. I'll throw in a prayer for your neck surgery while I'm at it.

    Trow, you're right in that the people who have good results aren't going to be lurking around on a chronic pain board but I'm even saying that everyone I just happen upon who has had back surgery seems like they are still having problems after. The only place you'll find them on the Internet are the doctors' websites under testimonials. LOL I know there are good outcomes out there! There have to be. Unfortunately, they seem few and far between. If I'm out somewhere in a crowd and happen to mention having had back surgery, people will chime in saying they have, too, and it's usually not to say "Boy, do I feel great now!" LOL As for your hubby, a lot depends on what he's got going on. A lot of herniated disk problems are treated easily with micro surgery these days and that seems to be one surgery where people seem have good success after. My problem was a bit complicated in that I had spondylolisthesis, disk bulge, and my spine was actually fractured on both sides and the bones that were fractured had tried to heal and there was a lot of scar tissue crushing my nerves.

    I don't know your husband's problem but if I had to do it all over again, not sure I would. Let's face it: I've ended up right back on pain meds anyhow so I could've just saved myself the hassle of surgery and just went to pain management from the get go. The only plus for me is that now the nerves are freed up for the most part and my nerve pain isn't as severe as it was before surgery. Like I said before, my advice to anyone considering back surgery is to get 2 or 3 or 4 opinions before deciding.

     
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