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MD Decided That I No Longer Need Pain Meds

RobinRRRobinR Posts: 67
edited 06/11/2012 - 9:00 AM in Chronic Pain
I'm about 13 months out from my last surgery and I think that things are pretty much about as good as they are going to get pain wise. Unfortunately, that means that I still have significant back pain along with the "electric shocks" periodically going down my hips and legs so I still require pain meds to function and go to work every day. I take the Norco 10/325 4x daily (or I did) and even though that never really got rid of the pain, it would at least decrease enough to where I could tolerate it ok. (normal for me was about 4-6 pain level with pain meds)

But now since I'm not a surgical patient (for the moment) my neurosurgeon felt like it was time to send me to a pain management doctor. The thing is, the pain management clinic that he sent me to is an "interventional pain clinic" meaning that they DO NOT manage nor prescribe pain meds, they only DO interventions like injections and stuff. I had my first appt with the new doctor about 3 weeks ago and right off the bat, he told me that I needed to be OFF of ALL meds within 6 months or he would recommend inpatient rehab which is "extremely unpleasant." He told me that he would do injections...medial branch blocks...and that that should get my pain under control. He really did not give me any opportunity to disagree or say much anything. That's just the way it was going to be.

I went for the injections 2 weeks ago. First of all, he did not tell me that I would be getting 6 injections all at the same time. I nearly had a panic attack and left the office because I KNOW how bad those injections hurt since I've had them so many times.....just never that many at once. He had offered me sedation when he first scheduled it, but I turned him down because like I said, I've had them before and felt like I'd be ok. On injection day, he proceeded to position 6 needles in my spine simultaneously and when they were all in, then he went back and injected the medicine. For those of you who have had these, you know how awful that part is! So all in all, I received 12 shots in my back if you include the 6 lidocaine shots he did to numb the areas first. Afterward, and for the next 2-3 days, I was in SO much pain I could barely walk. It literally felt as if my spine was swollen inside or something....it's hard to describe. But I recovered ok and was really hoping that I'd see a difference in my pain level. I didn't at all. Now I have to go back again next Friday to do 6 more injections and I am SO not looking forward to that!

Anyway, (sorry this is so long) I've backed off on my pain meds and have been taking them 3x daily instead of 4. next week I'm going to go ahead and go down to 2x daily for a couple of weeks, then 1x daily for a couple of weeks....then off completely. Problem is, my pain levels have already increased just by taking the pain meds every 8 hours instead of every 4 hours. My pain levels are now averaging between 7-9 during the day when I'm at work. I've been in tears a few times when it gets so bad I can hardly tolerate it. I know I technically have 6 mths to come off of everything, but I see no reason to delay the inevitable. Plus, I'm curious to see just how bad it's going to be. Will I be able to function? Will I be able to go to work? Will I be able to support my daughter and send her to college next year? The doctor has decided that I no longer need anything for pain and has threatened me with inpatient rehab if I'm not off of everything within 6 mths.

The thing that makes me so angry and frustrated is that I have NEVER abused the meds. I have NEVER asked for a refill early. I have NEVER even asked for an increase in dose despite my pain being really bad at times. I always get my pain meds from the same doctor and I always get them filled at the same pharmacy. I've followed all of their rules and have done everything they've asked of me. When I'm at home on the weekends and can lay down on my heating pad, I can do without the pain medicine just fine. But I HAVE to get up every day and go to work because I am a single mother and there's no one else to do it for me. So why is it better for me to be off all pain meds and become completely disabled from the pain and not be able to work? Or since I have no choice but to work, why is it better for me to live in excruciating pain? WHY IS THAT BETTER??? As things are now, my life already revolves around the pain. I no longer get out and do the things I enjoy on the weekends. I go to work Monday thru Friday and the weekends are for lying in bed resting my back so that I can do it all over again. Now this doctor wants to take away what little function I have left and sentence me to a life with terrible pain and absolutely NO pain control at all. It's just not fair.

It feels like my docs are washing their hands of me because they can't FIX me. :(
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Comments

  • Hi Robin :H ,

    There is no reason that one has to suffer with pain :T . I went through the "Interventional Pain Gauntlet" so know all about all of those nice needles. Thing is that my PCP at least prescribe me Vicodin for my pain. I have cervical spine issues so my chronic pain is in my neck. Fighting it for about 6 years now. After my last surgery in 2009, we moved and I had to leave the best neurosurgeon and best PCP I have ever had. I had a 2 level ACDF at C5/6 & C6/7. My pain was reduced by about 60%. Unfortunately, before I moved, I was forced to file for Social Security Disability 2008, which I was awarded in 2010. Pain began increasing to the point that now I am back in Pain Management. These guys ALSO do the facet blocks, epidural blocks, etc., but I am on a regiment of pain meds as well. Perhaps your Primary Care Physician could render some assistance? Please do not suffer. There ARE other alternatives. Keep me posted. Can send PM (Private Message) if you would like to. Hoping for relief for you soon.
    Rassy

    Rassy's Story
    Under House Arrest Without the Ankle Bracelet :-)
    The remarks I make are strictly my own based on my personal experiences.
  • Do you have a family doctor that you can see and explain all of this to, and get a referral to a different pain management doctor?
    Kelly
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
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  • jlrfryejjlrfrye ohioPosts: 1,111
    It sounds like this doc is not the right one for you. I would find another pain management doctor. It took me a few tries before I found the right doc for me. It is so sad as pain patients we have to jump thru all the hoops to get the care we need. Dont give up, and dont settle for the options you have been given if they do not work for you
    Susan
  • I cannot believe your pain management doctor is treating you like this. I know that medicine provision in the USA is totally different to ours (here in the UK), but surely, a doctor would not almost blackmail you with "inpatient rehab" (whatever that is). The fact you say it's 'extremely unpleasant' seems to be making you reduce you own pain meds for fear of going anywhere near it. And as you've found out to your cost since, your pain levels have increased. I'm not a doctor, but even I can tell this isn't the way to go to improve your current sitatuion, it's only making it worse!

    NB: I just had a giggle to myself, sorry. I first typed "iMpatient rehab" by mistake, but think it's probably more apt in your case, lol.

    Also, when you say "I go to work Monday thru Friday and the weekends are for lying in bed resting my back so that I can do it all over again" - that's exactly how I have been throughout my 7 years of chronic back pain and needing to continue to work (which I'm not at present, but that's a totally different story!!!). I know exactly what you mean - resting your back for fear of not being able to return to work on a Monday and NOT doing anything too physical AT ANY TIME that could jeopardise your ability to continue working.

    You have done nothing wrong, have followed all the correct guidelines and need effective professional support - which you are clearly not getting from your current pain management doctor.

    So I agree with the others - try and find a new pratice to attend that is more supportive and will maintain your current efforts to reduce and manage your pain levels, so you can continue to work, which sounds like your main priority at the moment. If the injections do not work, then you should be allowed to keep your medication regime so you can continue to work.

    I can't believe some of the awful experiences I've read on this forum - and it seems to me that most of them are coming from the USA where "contracts" for medicines seem to be the norm. I don't understand them, to be honest, but hope we don't ever adopt this system in the UK.

    There is further help for you out there, I'm sure, and perhaps when you've found it you could let us know how you get on?
    SUE
    2 x Microdiscectomy 2005 / PLIFusion 2-level 2010 / revision surgery 2011 / NEVRO Senza spinal cord stimulator implanted February 2013. I WILL NOT GIVE IN / UP !!
  • Rassy- my PCP has never been a fan of pain meds and has hated prescribing them for me, so if the pain doctor says for me to get off of them, I have no doubt that my PCP will jump on board with that plan. I don't think he'll be a resource for me at all. From what I understand (since I'm a nurse and know a lot of doctors) is that he had a patient several years ago who overdosed and died on pain meds and ever since then, is very leery about providing them to anyone. Despite the fact that I've proven over and over again that I can be trusted not to abuse them, he still gives me a hard time.

    SueD- the inpatient rehab being "extremely unpleasant" was the pain management docs words....that is what he told me, I guess to scare me into stopping my pain meds.

    This might be a good opportunity for me to begin looking for a new PCP. Our health insurance just changed at the beginning of the year and my PCP is not in network meaning that I have to pay more to see him. The only reason really that I've stayed with him is because I've been going to him for so long. It's sort of like a bad marriage....I don't like him, but I tolerate him because he knows me and my history and I hate to start over with someone new.

    I actually work at a competing hospital so there is sure to be other doctors I can see who are in my network. As I said, I'm a nurse, but since the back injury, I'm not able to work in patient care anymore. I have a desk job now. This back pain has already taken so much from me, that I just don't want to let it take anymore.
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  • dilaurodilauro ConnecticutPosts: 12,238
    to another. I believe that one needs to get to the bottom of why one particular doctor is not providing the level of care that you (the patient) is expecting.
    Many times there is sound reasoning.

    But after reading your post, I was shaking my head.
    First, 6 injections at one time! I know no doctor in this area would every give more than one at a time and the major insurance companies only will approve 3 a year. Thats for ESI , done with or without a fluoroscope and has the two needles, the first insertion and then the medicine delivery (steroid).

    I've had 4 or 5 trigger points a one time. I have heard of multiple facet injections.

    But what bothered me the most was the statement from the Pain management doctor
    RobinR said:

    . The thing is, the pain management clinic that he sent me to is an "interventional pain clinic" meaning that they DO NOT manage nor prescribe pain meds, they only DO interventions like injections and stuff. I had my first appt with the new doctor about 3 weeks ago and right off the bat, he told me that I needed to be OFF of ALL meds within 6 months or he would recommend inpatient rehab which is "extremely unpleasant." He told me that he would do injections...medial branch blocks...and that that should get my pain under control. He really did not give me any opportunity to disagree or say much anything. That's just the way it was going to be.
    That should Never be the way it is going to be. I havent heard of many pain management doctors that do not prescribe pain medications. I would seriously look for another doctor at this point. Someone who is willing to work with you. And I am sure you know that doesnt mean more medications, it just means helping you so that you can continue to work and function.

    When a doctor refused to help a patient in this area, someone who is willing and wants to work, they are basically sentencing them to go on disability. Now in the long run, we all have to pay for anyone going on disability.

    I was approved for it many years ago, but I refused. As long as I am able to work and be someone productive, I am going to do it. When and If there comes a time, well I will cross that road later.

    Robin, I commend you for wanting to do just what is right. I hope you can find another doctor that will be willing to work with you. I don't know where you live, but see if you can find any physiatrist.

    Best of luck
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • It is time for a new PCP, and a new pain mgmt doctor. You must be extremely nice (probably why your a nurse) to tolerate that first conversation with this guy. I'm afraid I would have told him where to put his needles and I would have left. Never subject yourself to anything you aren't certain off. It is YOUR body and I agree with Ron, I have never, ever heard of that many at once. That is scary in itself!
  • Mouse said:
    It is time for a new PCP, and a new pain mgmt doctor. You must be extremely nice (probably why your a nurse) to tolerate that first conversation with this guy. I'm afraid I would have told him where to put his needles and I would have left. Never subject yourself to anything you aren't certain off. It is YOUR body and I agree with Ron, I have never, ever heard of that many at once. That is scary in itself!
    Haha....I guess I'm nice, but honestly, I've just tried to do what they have asked of me. I never wanted to be labeled a "drug seeker" or "difficult patient." I hadn't ever heard of getting that many injections at once either, which is why I almost chickened out when he told me that's what was happening. I mean, I've had numerous injections over the years from ESIs, to SI joint injections, to trigger point, to facet blocks, etc....but the most I've ever gotten at one time was two injections. (my SI joints) I did check into it after the fact, and I did read where they'll often do multiple levels with the MBBs or Facet Blocks as some know them. The intent supposedly is to see if a person gets really good relief and if they do, then the doc recommends the radiofrequency ablation of the nerves. At first I was under the impression that an RF ablation would destroy the nerves permanently, so I was all for it....if it worked. I mean who wouldn't want to destroy nerves that are causing pain right? But then I found out that RF ablation only lasts a few months until the nerves regenerate. That sucks! Spinal cord injury patients don't get regeneration of their nerves, I don't understand why these nerves would regenerate. Anyway, that procedure does require sedation because they are burning your nerves which can be extremely painful....but I was willing to go through all of this in the hopes that it would work for me. Now since I didn't really get any relief from the medial branch blocks, I suspect an RF ablation wouldn't help me much either.

    Anyway, I guess it is a good time to begin the search for a new doctor. I do feel like if I stay with these guys that ultimately I will be permanently disabled and I really don't want that.
  • Docs don't tell pts who need multi level fusions that pain meds stop working, especially oxy meds. They migrate into our tissues and aren't in the blood stream to bind with our opioid receptors in our brain, spinal cord and gut.

    Oxy is the worst for this but the most highly used.

    I am in the health care profession with an adv degree. Pls make sure everyone knows. My plan 18 mos post multi level fusion with spinal cord damage is to get my muscles as strong a possible, use rare opioids, use other meds to calm my legs and eat well.

    Hope all is well for All of You but, pls don't let doctors escalate your dosage or put a pump in you. It is all so they will make money and not benefit you but, can harm or kill you.
  • working2gain said:
    Docs don't tell pts who need multi level fusions that pain meds stop working, especially oxy meds. They migrate into our tissues and aren't in the blood stream to bind with our opioid receptors in our brain, spinal cord and gut.

    Oxy is the worst for this but the most highly used.

    I am in the health care profession with an adv degree. Pls make sure everyone knows. My plan 18 mos post multi level fusion with spinal cord damage is to get my muscles as strong a possible, use rare opioids, use other meds to calm my legs and eat well.

    Hope all is well for All of You but, pls don't let doctors escalate your dosage or put a pump in you. It is all so they will make money and not benefit you but, can harm or kill you.
    working2gain, with all due respect, you've been a member here for a little more than a half hour so it's not really fair for you to come here and tell people not to ask for pain meds or other treatments that could potentially help. Just because you say that you're in great shape and won't need anymore pain meds soon, does not mean that everyone else on the planet should follow suit. Every person is different and every situation is different.

    Oh and MY plan before my first surgery was to start walking a couple of miles daily within 2 weeks, to be completely off of pain meds within 8 weeks and be back to 100% by one year. But then I wasn't counting on the deep spinal infection I got which destroyed pretty much what was left causing me to have two additional surgeries and 7 mths of IV antibiotics. Best laid plans huh?

    Good luck to you.
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