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MD Decided That I No Longer Need Pain Meds

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Comments

  • Robin,

    My heart is with you. I have no idea how you are managing. You are strong beyond belief. I hope you find relief soon- somethings got to give.

    Very gentle cyber hugs & encouraging thoughts from me >:D<

    Feel Better,

    Julie
  • Julie said it perfectly. I can only echo what she said, Robin. :hug:
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  • Robin I sit here shaking my head, I KNOW I could not do what you are doing and live to tell about it.

    Special prayers/thoughts going out to you today (fri) as I am sure by now you have had your shots. I can only image your state of mind.

    PLEASE don't push your body to deal with the pain too much longer.

    Find a new Dr :)

    I hope I am wrong & your shots are working well for you :D

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • Well I survived another set of 6 injections! (medial branch blocks) God it was awful! There was a different resident doing the injections this time while my main doc watched. Which is really fine...I understand that I go to a teaching institution and residents do a lot of the smaller procedures so they can learn. Most of the time, they do a great job...sometimes better than the more experienced docs because they're trying so much harder to be careful and do it right. The guy that did the injections this time wasn't quite as good as the woman who did them last time. He actually had more experience because he'd been in private practice for several years and had just started another fellowship to learn the interventional pain procedures. So I guess he was sorta new with the spine injections. Anyway, one of the needles he put in was apparently wrong and it shot pain into my right groin area like you wouldn't believe! I jumped when he did it (which you're really not supposed to do when they're putting needles in your spine) and he asked what happened. I told him that I was having terrible pain in my groin. He asked if that was the same kind of pain I usually had. I said, "I don't have pain in my groin normally, so NO this is not normal at all!" He had to pull that needle out and try again. It took him three tries in that location. The other five locations went smoother I guess, but I still cursed a lot and yelled some. LOL

    Afterward, one of the guys was taking me into the recovery area and told the nurse in there, "She didn't have any sedation so she should be good to go." The nurse said, "Yeah I heard." I said, "Oh no, you heard me yelling? I hope I didn't scare all the other patients." There was a little old man behind another curtain in recovery and he pipes up and says, "You scared ME!" LMAO!! I cracked up at that and told him I was sorry. :))(

    I also had a really good discussion with the pain management doctor before we started the procedure. I spoke with the resident first, but I think he wasn't quite sure what to tell me since it was his first time seeing me. So when the attending came in and sat down, I told him what I'd been doing as far as weaning down off the meds. I also told him that I didn't think that the previous injections had worked for me because my average daily pain levels had gone from 3-5 up to 6-8 since trying to wean off the pain meds. Plus my blood pressure was higher than it's ever been when the tech took my vitals, which was obviously because I was hurting so bad. (my BP yesterday was 148/96...my normal is about 100/60) He said, "Why are you weaning down so quickly? I thought I told you to do it over 6 mths." I said, "I just figured that I might as well get started on it because I don't see my pain magically going away at the 6 mth mark." He said, "So you're EXPECTING our treatments to fail?" I said, "No, I didn't say that. I hope that they will work because obviously, I'd love nothing better than to be out of pain." He said, "Well the reason that I gave you 6 mths as a goal is because I thought that would give us time to try a few things to see if they would work first. Getting rid of your pain isn't going to be an overnight thing or a one time deal. It's going to be a process that we have to chip away at until we find what works and what doesn't. But if you've already got it in your mind that nothing is going to work, then you're defeated before we ever start." I felt like an idiot after he said that. I've never been a quitter. In my defense though, pain can make you a really negative person. (as I'm sure you all know)

    He went on to explain to me again why the medial branch blocks are necessary. They're basically diagnostic and not therapeutic so of course they're not meant to get rid of my pain for any length of time. (which I completely misunderstood previously) They're meant to isolate the nerves that may be causing the biggest problems and after that, we do the radio frequency ablation of the nerves that are to blame. I thought the injections were supposed to give me some sort of pain relief like the ESIs and SI joint injections do. I guess I thought that since I didn't get any lasting pain relief from the last MBBs, that they were a failure and there was no point in delaying the inevitable by getting off the pain meds. I knew that the insurance company required two diagnostic procedures, which I've now done, before they would approve the RF ablation. The doc also told me that it's normal for my pain to be worse for a few days after the procedure because they're sticking needles in through my muscles and stuff and irritating everything. He told me this time to try and really pay attention to the pain in the first 6-12 hours afterward to see if I noticed a difference in the deep bone/spine pain because after the first few hours, the numbing medicine would wear off and the pain would come back. He said for me to not worry about the muscle spasms and pain from the injections, but to focus on my deep pain that I normally had.

    So I did that this time. I understood better what to expect and yes the deep pain WAS better for the first few hours. In fact, at about 11pm last night, which would have been 12 hours after the procedure, I got up to the bathroom and suddenly had the severe left-sided pain again that takes my breath away and makes me feel like I'm gonna pass out. So it does appear that I got relief from that pain for about 12 hours. But today, I'm hurting like hell, as I expected. Any of you who've had spinal injections know that the day or two afterward are terrible. Sometimes even a small movement feels like the needle is still in your back. I think I'm bruised again too, but I haven't taken the bandaides off yet since I wasn't supposed to take them off or get the area wet for the first 24 hours. I did drive up to the store a little while ago and just touching the car seat with my lower back felt like it was bruised. So it probably is...just like last time.

    Overall, I guess I feel better about things and maybe my doc isn't planning on abandoning me just yet. Maybe it was my fault for misunderstanding and assuming that he just didn't care. He told me that if my average daily pain is at 6-8, then that's way too high and that I need to take pain medicine when that happens. He doesn't expect me to suffer and ideally he wants to get me to the point where my average daily pain level is 3 or below without pain meds. He also told me that based on the problems with my back, I'll never be completely pain free, but if we can get it down to a manageable/tolerable level without pain meds, then that is the goal.

    I'm scheduled for the RF ablations on 4/13 and 4/27. They do one side and then the other. I have no idea why they don't do both sides at the same appt but I guess it's because they're doing three levels on me and it would be way too incredibly painful to tolerate dying nerves on both sides at the same time. (at least it sounds like it will be) I did some reading on the procedure and everything I've read does say that the pain is going to be a lot worse for a few days to a week while the nerves are dying. (doesn't sound very pleasant does it?) So I guess about the time I recover from the first procedure, it'll be time to do it all over again on the other side. :S

    So as of now, on my doctor's recommendation, I will probably add back one of the doses of pain meds that I'd cut out, at least until after the procedures are done. He said there was no point in allowing my pain levels to stay between 6-8 because it'll just get me depressed and I won't be as motivated to get better. And he doesn't want my blood pressure staying that high either.

    Has anyone had the RF ablation before? I'd love to hear your experiences with that. How bad was the procedure? (yes I'm getting sedation this time!) How bad was the pain afterward? Did it seem to work to get rid of or reduce your pain?

    Maybe I'll post a separate thread asking for feedback on this procedure so it'll be easier to see and respond to.
  • wow wow & wow! A very big eye opener this whole experience has been. I am sad you suffered so much to learn all that you now know :(

    The lesson I myself take away from this is to talk more to my Drs.

    After reading this I think you are in good hands after all :)

    Yeah I too think you should start a new thread as that is a whole different topic ;)
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
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  • MsHumptyDumpty said:
    wow wow & wow! A very big eye opener this whole experience has been. I am sad you suffered so much to learn all that you now know :(

    The lesson I myself take away from this is to talk more to my Drs.

    After reading this I think you are in good hands after all :)

    Yeah I too think you should start a new thread as that is a whole different topic ;)
    I think it's partly my fault and partly my doctor's fault that I didn't understand the goal of the injections I got a few weeks ago. I mean, I knew that they were diagnostic because he had told me that if I got relief from those injections, then the RF ablation would likely work well for me. But he didn't specify that the pain relief would only last for a few hours after the procedure. I thought they were also putting steroids in the injections and that I was SUPPOSED to also get lasting pain relief...which I didn't...and now find out that I wasn't supposed to.

    So yeah, he could have explained things better and if he had, I might have reacted differently. I think this was a simple case of the doctor rushing in and rushing out as they normally do and leaving the patient with unanswered questions that they may not even know they had. I think it was a good lesson for me and could be for others as well. After that first appointment with him, I left there feeling as if he didn't give a crap about me and feeling like his plan was to stick a bunch of needles in my back and if that didn't work then I was basically out of luck. He seemed genuinely surprised by my comments yesterday and my understanding of how things were supposed to happen. I think that's why he spent a little more time with me and made sure I understood things.

    And it might have even been BECAUSE I'm a nurse that he assumed I understood things. But I wasn't that kind of nurse and I've never had any experience with medial branch blocks or RF ablations and what the expectations are supposed to be. Who knows....the bottom line is that he and I did not communicate effectively and therefore I was feeling abandoned.
  • I 10000% agree ! I hope you don't think I was finger pointing at you. I was finger pointing at the Dr ;)

    I am sure it was in part of you being a nurse. AS well as a combine of him rushing too fast.

    I meant for us to REALLY talk to our Drs and make SURE we knew/understood EVERYTHING :D

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • MsHumptyDumpty said:
    I 10000% agree ! I hope you don't think I was finger pointing at you. I was finger pointing at the Dr ;)

    I am sure it was in part of you being a nurse. AS well as a combine of him rushing too fast.

    I meant for us to REALLY talk to our Drs and make SURE we knew/understood EVERYTHING :D

    I definitely did NOT feel you were finger pointing, but it was sort of an "Ah Ha" moment for me when I realized that he ASSumed that I understood everything when I didn't. And I probably THOUGHT I understood everything too, but I didn't. I blame both of us...the doctor and myself.

    I think the breakdown in my particular situation was that I didn't know the right questions to ask and he assumed I knew it already because I'm a nurse. So I left there NOT understanding and feeling like he and my other doctors were basically giving up on me which wasn't the case.
  • Hi Robin. I've had RF @ C-2 and I will say that it was uncomfortable and that afterwards (after the numbing agent wore off) I was pretty sore for over a week. My pain medication helped, but the pain was there and I knew it. Even sleeping, I woke up every time I tried moving in my sleep (that type of pain), though all in all I'd have to say that I'm not even sure that it helped much or not. It's confusing because I had pain, then having the added pain after the RF's seeming to become a new normal...and now I still have pain, but can't tell you if it's really much different than before. Geeze-I hope that makes sense.

    As far as goals go, I think all of our Drs approach each pt. with the goal of getting us to be free of pain/pain meds.. even if they don't know if that will ever be the case. I believe they tend to look at us and talk to us with more the glass half full, knowing that we might be influenced otherwise. But communication in that area is very important and some people have a hard time communicating their pain to their Drs because it can make some people feel like they are caving in to it, weak, or for other reasons. I know that I have a difficult time discussing my pain and even fear it actually. But.. I'm glad to hear that your injections are over with, at least for a couple of months. I don't post a lot anymore, but I try to keep up. Good luck with your RF and I hope you get relief from them.
  • to both Robins - I wish you the best & hope you keep us posted how your doing :)

    RobinR did you start your new thread yet? I didn't see it but I could have over looked it...
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
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