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Thread: Pain Management in Pgh - SO Frustrated!

  1. #1
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    Angry Pain Management in Pgh - SO Frustrated!

    Okay, so we get a referral from the SCI doc in January to an anesthesiologist for a nerve block (I posted about this previously). The anesthesiologist says that won't help the pain, so he sends us upstairs to a neurosurgeon, thinking the MRI shows a "fluid sac" that might be cuusing the pain. We got to the neurosurgeon who says that what's on the MRI is scar tissue (injury was in 2000) and that the only thing he might possibly do is down the road insert a baclofen pump - IF the anesthesiologist goes that route. Okay, so back to the damn anesthesiologist who puts him on Neurontin and Pamelor - neither of which do anything. We go back again - a month later - to the anesthesiologist who tries Zanaflex. Again, nothing, no relief whatsoever. So we are supposed to return to the anesthesiologist in 2 weeks but we call to say, hey, this stuff isn't doing anything, can we switch to something else NOW instead of waiting 2 weeks? The doc says "Do you have any Vicodin" - that's all he can suggest? Frickin really? We STARTED with Vicodin, which isn't something he wants to take every single day. Why is it so hard to find someone to help with this stuff? What's the point in returning in two weeks if he is already saying that the only thing he has to offer is Vicodin? I'm hoping if we call and REQUEST (AKA demand, but nicely) something else - say Lyrica - the anesthesiologist will at least call in a script to appease the patient. Anybody have any thoughts on this? It is so frustrating! The last thing he wants to do is end up taking Vicodin like candy, which is what will happen if he just does what the doctor tells him to. Who wants to live on (let alone possibly become addicted to) that? Ugh!

  2. #2
    It's worth a try to ask for Lyrica.

    Do you remember the dose of Neurontin? Some doctors toss in the towel on that choice without ramping up the dose high enough to help, and some patients need more than others.

  3. #3
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    Topamax is what worked for me but had to up the dose. It is important to understand that there are different kinds of pain and narcotics are not going to work on the neuropathic or nerve ones. You didn't say or describe what kind of pain you are having. It is truly a battle that eats at your mind and without control will drive him to madness. I have been there...I think most of us who fight it here have been.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  4. #4
    To be brief, Zanaflex and baclofen are useless for pain unless the pain is spasticity oriented.

    More troubling is the medical communities inability to diagnose or understand the etiology of most of our pain.

    Also this is a guessing game for the pain docs as we all respond differently to the meds who as a secondary outcome help some pain e.g. lyrica, etc.

    Finally, and I pray differently for you, there are some, myself included who has tried everything at least twice in multiple protocols with no relief. This is over an almost 8 year stretch and I continue to get worse but continue to try.

    I have gone mad and will likely pull my own plug sooner rather than later.

    ket
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  5. #5
    Quote Originally Posted by darkeyed_daisy View Post
    It is important to understand that there are different kinds of pain and narcotics are not going to work on the neuropathic or nerve ones.
    I have a heartfelt plea to all my pain forum friends -- would you please stop saying this? It’s not true.

    While narcotics don’t work for everyone [what does?] and all narcotics are not created equal [d’oh!], narcotic meds can provide relief from central and peripheral neuropathic pain.

    Methadone is my pain specialist’s drug of choice for both her central and neuropathic cancer pain patients. Both T8burst and I [and I believe others here] take methadone for relief of central pain.

    Arndog is just one of a number of CCers who use oxycodone as part of their pain management arsenal.

    Tramadol is also mentioned a lot as the central pain med of choice, although my aging mind refuses to recall who’s said that besides ~Lin.

    Apologies to the OP for the hijack. The hunt for pain relief is frustrating enough with a good doctor on your side. It’s positively maddening when you must deal with the kind of idiots you’ve encountered. Certainly there must be more than just one anesthesiologist/pain specialist in the city. And if there’s not, it’s worth the hassle to travel to where there is one [the Cleveland Clinic comes to mind].

    I hope you can find both a competent doctor who’ll work with you and a drug or combo of drugs that help soon.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  6. #6
    Nickib - I am sorry that you and your man aren't being taken through a good pain management algorithm to be sure that they tried 2400 to 3000 mg of Neurontin before giving up on it and that they immediately try him on the alternative, Lyrica, upping the dose to 600 mg per day before throwing the towel on that med. Even doing that may not yield an answer to your new problem as those doses have really significant side effects that can be intolerable which will hit before the therapeutic effectiveness is reached.

    Vicodan has side effects too. But it also has effectiveness as do all the opiate class of meds. If you were to take a care cure pain poll, I would suspect that there are more people helped by opiate meds for neuropathic and central pain on this site than those who are not. Put me in the category of one who gets central pain relief from these meds along with THC, T8Burst, smokey mountain memories,jody, to name a few.

    Your man may not want to be popping Vicodan like candy so don't do it. Have your doc consider many of the long acting versions that you don't 'pop like candy' but rather take them on a schedule that is stable and doesn't require an emotion filled decision each time you need to take it. These would be the long acting opiates like methadone, duragesic patches, oxycontin, MScontin, etc. What I read into your post is a fear of taking too many Vicodin or perhaps a stigma or preconceived notion about this class of medication.

    Also, you may not want to take this med but you may not be in the driver seat anymore. Your new uninvited guest may be calling the shots and that is hard to get used to. If your man gets some relief from Vicodan type medication (opiates), I say take it while you look for a better regimen.

  7. #7
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    Quote Originally Posted by thehipcrip View Post
    I have a heartfelt plea to all my pain forum friends -- would you please stop saying this? It’s not true.

    While narcotics don’t work for everyone [what does?] and all narcotics are not created equal [d’oh!], narcotic meds can provide relief from central and peripheral neuropathic pain.

    Methadone is my pain specialist’s drug of choice for both her central and neuropathic cancer pain patients. Both T8burst and I [and I believe others here] take methadone for relief of central pain.

    Arndog is just one of a number of CCers who use oxycodone as part of their pain management arsenal.

    Tramadol is also mentioned a lot as the central pain med of choice, although my aging mind refuses to recall who’s said that besides ~Lin.

    Apologies to the OP for the hijack. The hunt for pain relief is frustrating enough with a good doctor on your side. It’s positively maddening when you must deal with the kind of idiots you’ve encountered. Certainly there must be more than just one anesthesiologist/pain specialist in the city. And if there’s not, it’s worth the hassle to travel to where there is one [the Cleveland Clinic comes to mind].

    I hope you can find both a competent doctor who’ll work with you and a drug or combo of drugs that help soon.
    I truly misspoke when I made that statement. So forgive me. My statement should have been that nothing relieves all pain and you just have to find the right combination that works for you.

    Everything you and Arndog say above is so true. So many doctors and pain clinics are not quality. I am starting over as we speak at yet another pain clinic because I have wasted four months like the original poster. I understand her fears and the fears of the person she is here trying to help. We all know the toll Chronic pain takes on our minds. It is a toss up between the effects of narcotics and wasting away with the maddening burning.

    Fear is a very real concern when appointment after appointment, they just ignore what you are telling them. My last medication switch scared the hell out of me. I admit I am reluctant to go much stronger than the 5mg oxycodone I take twice a day because of the maddening central pain. Anxiety and depression are very real on top of just not being able to focus. Especially when every doctor places a stigma on narcotics just like Arndog speaks of.

    I worked, lived, raised a daughter and "ignored" it for 17ish years without meds. As a result, I don't feel earaches, scratches, etc because my pain threshold is so high. Interesting huh? The doctors I have worked with think so. It will be 24 years this year so I think I am ready to be someones lab rat somewhere.... there has to be a better way.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  8. #8
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    Thanks to all who posted. After my original post the doctor called back and put him on Skelaxin. Still, two weeks later, no relief. We have an appointment on Tuesday and I'm trying to get all of my information together to hopefully discuss options with this doc. I know I am not the patient here, but I care about him more than any doctor could and my guy isn't the type to cause a fuss - he will just live with the pain. I made note of all of the suggestions and will review them prior to the appointment. We know it's a trial and error process to find what works for each individual person and accept that. I like to be able to go with him to the appointments but I am starting a new job, so after the appointment on Tuesday I won't be able to go with him as his advocate for some time. That just adds to the urgency in trying to find a resolution. Thanks again to all and I will post an update after the next appointment.

  9. #9
    I'm missing the point on Skelakin as well.

    Dej Dog what is the typical efficacy of anti seizure/anti-convulsants for pain unless spasticity oriented? I tried it in several of my cocktails but could not tolerate it but the pain doc said its function was the spasticity and extreme tone pain it might help if I could tolerate a dosage that would stop the spasms.

    the OP did not seem to indicate the type of pain (if possible) thus my question.

    ket
    Kindly,

    The Ketamine Kitty

    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

    Next time I die make sure I'm gone,
    don't leave 'em nothing to work on JT

    And I ain't nothin but a dream JM

  10. #10
    Bill - are you thinking of Baclofen for spasticity? Anticonvulsants (Gabapentin aka Neurontin and Pregabulin aka Lyrica) don't treat spasticity but just nerve pain. I don't have spasticity but I understand that treatment to get it under control helps with pain. I don't know statistically how good any of these meds are. I don't want to make a study out of this, but just feel better personally with my neuropain. My experience is really based on what I see on this website. Occasionally, my wife gives me a 'study abstract' to read about neuro pain. I glance through them but I am just glad for meds giving me a few good days...
    like today I might add......

    Nickib - Do you mean to say that all your man was given was Skelaxin which is just a mild muscle relaxer? May I ask what exactly is the SCI condition of your man. Complete, incomplete, what level, etc. ?
    Last edited by arndog; 04-26-2012 at 05:30 PM.

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