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Thrown For a Major Loop! :o(

caitycccaityc Posts: 268
edited 06/11/2012 - 8:36 AM in Back Surgery and Neck Surgery
So today I had my appt. with my pain management doc. Such a wonderful doctor by the way, before I start. :)

I've had two epidurals. One 2 weeks ago, and one two weeks before that. Neither of them worked. :''( The sciatic pain was reduced for about a week, and it didn't really touch the back pain. The leg pain is coming back, back pain getting worse, and I now have pain on the left side of my groin, into my labia (sorry if too graphic).

So, he tells me that more than likely I have a lot of scar tissue from the diskectomy, and that is not allowing the steroid to get to where it needs to be. He said he could try to do it again, doing one below my L5 S1, and one above it, or perhaps a facet block. However, he doesn't really think it will help. He said I might want to try an inverter (ouch!) or physical therapy. He said it's up to me though. He also said I need to taper off of my pain meds. He said they are masking the "true" pain. He can get a clearer picture with what is going on with me if I am not on pain killers. He wants me to start by taking 4 a day for a week, then 3 a day for the next week, then 2, then 1.... He also said my pain will increase at first due to the reaction the body has not having the meds any more. He then said I will feel my true pain. He told me though that the bottom line is that I am heading for a fusion. My facet joints are in terrible shape, and the anulus of my L5 S1 disk is pancaked, which both explain my bone pain.

Boy am I in for a long haul! I know pain is coming, and I'm terrified. He asked me how old my kids are (13 and 8), and when I told him he got the most concerned look on his face and said "I hate to have them go through this". Referring apparently to my withdrawl from the meds, as well as the pain I'm going to be in.

He told me basically that I am going to get worse and worse. My facet joints are going to continue to disintegrate, the compression is going to get worse, and the bone spurs and going to continue to grow. Nice! Not! X(

He told me he was sorry to give me such bad news. Needless to say I started crying like a baby right there in his office. I just guess it is what it is, and I just have to deal with it. I would feel better knowing 100% that the fusion is going to fix me. But unfortunately I won't know until it's done. In the mean time I have to go without any pain meds. :S

Thanks for listening. I'm so confused. First I'm told fusion, then conservative treatments first, then I'm not a candidate, now I'm heading for a fusion again. ~X(




  • This Dr is pain magmt doctor, if I read it right. You need to see a ortho or nuero to make those kind of decisions. I think a second opinion is in order. I dont understand what he feels therapy is going to do, but I also know you have to go through all the conservative measures before you have a fusion. But if I were you, I definently would go and get another opinion with another Dr. I went 2 1/2 years of searching for a Dr who could even find out what was wrong, and then went to another ortho before deciding what I wanted to do. Dont give up, and please let us know what we can do for you...Love, Robin
  • the route I have to take before I have surgery. I agree all conservative treatments should be done first. My primary also recommended I see a PM doc too, just so the insurance company can also see that I've tried everything first, and any neuro surgeon I see also knows I've tried everything. My PM doc is ultimately going to refer me to a neuro surgeon once I've quit the pills, and he has a better idea what all is going on with my back. I'm just so scared because I know I am going to hurt so bad. :S

    I'm not sure how soon he sees me getting a fusion, but he said at some point I'm definitely going to have to have one. He said I can try physical therapy, keep living like I'm living, and/or eventually have the fusion. He says "I know I'm not giving you many good choices here". I can tell he really does feel bad for me. Isn't it funny how empathy actually makes it worse? I mean in terms of the tears coming on. Give me a shoulder to cry on and you'll have to change your shirt. :)

    Thank you Robin. I won't give up, even though I might feel like it every once in a while. :)

    >:D< >:D<

  • Go get a 2nd opinion! What in the world? Masking your true pain??? You have objective scans showing your true pain generators. This is torture. Course this is all my opinion. Run for the hills and get a new doc since it would be illegal to give him the damage it would require for him to feel the same pain as you.

    Here's a story sorta the same, not pain but just as stupid: Patient comes in with essentially no heartbeat. We use the external electric pacemaker to force a heartbeat. Then residents come to admit patient and ask us to turn off the pacemaker to "see the underlying rhythm." How ignorant! The underlying rhythm has already been proven to be ineffective!!!! Same thing for you, your "real" pain is not being masked by the pain killers, he shud hand some more out to you to HELP. All my personal opinion.

    This is one of those posts where I rant and get on my soap box. This is just plain ridiculous. The amount of meds you're taking are like candy, you aren't taking any heavy hitters at all. Torturing you isn't going to help figure out what your "real" pain is.
  • He is not a fan of narcotics. He mentioned to me during my first epidural that he has disk problems and doesn't like narcotics cause it only masks the pain and allows you to do things that only further damage your back.
    What happened was I saw my primary yesterday for several reasons. Let me back up.... When I first started seeing her in July (we moved from CA to AZ), I needed more pills. I felt very reluctant to say "hi, I'm Caity, can I have 6 Norcos a day?". So I low balled it and said I only needed 4. 4 is not cutting it. So yesterday when I saw her, I asked her if I could have 2 more a day. She said now that I am seeing a PM, she didn't want to prescribe any more, because she didn't want to conflict with my PM doctors plan. Rats! Based on his comment a month ago, I had a feeling he wouldn't write me a script. I was right.

    And as a matter of fact, he told me 6 Norcos a day is too much to take. He explained to me that 6 will turn into 8, 8 will turn into 10, etc. He said I am building tolerance, so my best course of action is too ween off of them, see what my "true" pain is. Then I guess when start taking them again, my tolerance won't be so high.

    I am just so scared. I'm just afraid of the pain. :( He did tell me that if I am in a lot of pain, to please take a pill. Just try at the same time to ween off of them.

    Thank you Nurse. I appreciate you validating my kind of "WTF?" feeling. LOL!

  • my PM doc again today. He is just confusing me. He says that coming off the meds will show my true pain so he can figure out whats causing it. I told him that I thought with the bad disk, nerve compression, facet joint disease and bone spurs that it was obvious what my pain was. So I asked him if coming off my meds will determine which one is causing pain, and he said yes. Does it really matter? Am I missing something? He also said because I am so young, at this point it will be difficult to find a surgeon that will perform a fusion. I think what he is doing is gathering all the facts, so when he sends me to a surgeon, he can clearly state "OK, she has this, this and this, and this is causing pain, bla, bla, bla".

    What do you think?
  • I am still of the opinion that you should get another PM doc! :) There are ways to determine which levels and nerve roots are responsible for your pain. Taking your off/lowering your meds is only going to make all of your pain act up which I would think further confuses the issue.

    To find out which level is your true pain generator, Dr. No Meds can order a discogram or do a series of selective nerve root sleeve injections. If the numbing med from the nerve root injection takes away 100%(only lasts less than an hour, alas) of the pain in that dermatone(area of the body that nerve is responsible for), then there's a pain generator.

    Have you had a discogram yet? They are not fun, not to scare you, but I bawled through mine even with IV drugs. However, it gave an exact answer to which levels and nerves were my problems. Maybe you could ask Dr. No Meds if this would help in your diagnostics??? You have to be awake for this test to some degree so that you can report your symptoms, but I did have versed and fentanyl IV so that I could even lay on my stomach for the test. If you are not familiar with this, it looks at discs as well as nerves.

    Find a surgeon to perform fusion on you? LOL. Surgeons in the US are eager to perform fusions. Seriously, tho, it sounds like you need a spine ortho surgeon or spine neurosurgeon involved to see what they think. Doesn't mean you're jumping on the fusion wagon, I just think(personally) that Dr. No Meds is not doing you a whole lot of good and a fresh set of eyes might be able to give some help. I don't understand why you have to endure so much torture. I know insurance companies like to have you do 3 epidurals and flunk PT before surgery, but holy heck, you have proven disease and surgery already.

    Good luck to you, please keep posting your story.
  • well good enough- he shouldn't take them then! LOL! Who is even a doctor to say "This is masking your true pain1" What the hell- really- I am 100% with ERNURSE. Get a second opinion-

    Also keep in mind that a fusion will not 100% fix you either- some don't fuse at all and others have worse pain after a fusion-

    But please do get a second opinion- you know your body- you know your pain-

    Take care~
  • well good enough- he shouldn't take them then! LOL! Who is even a doctor to say "This is masking your true pain1" What the hell- really- I am 100% with ERNURSE. Get a second opinion-

    Also keep in mind that a fusion will not 100% fix you either- some don't fuse at all and others have worse pain after a fusion-

    But please do get a second opinion- you know your body- you know your pain-

    Take care~
  • with Hope and ERNurse, this PM doc isn't doing you any favors. This seems to be a new thing for PM docs that I've run across, though, they want you off narcotics and on other things. My last PM doc told me that he didn't prescribe narcotics EVER when I tried to ask him a question about taking them (I already had them, wasn't asking for more). My primary doc "doesn't believe in narcotic painkillers" either. I told him he can believe, I've seen them!

    All this PM doc's talk of uncovering your "true" pain is a smoke screen IMHO to get you to stop taking the narcotics and adhere to other methods of pain control. But as we all know, sometimes they're the only thing that keep up with the pain.

    Please get another opinion, and another PM doc, if this guy isn't controlling your pain. Only you can tell if you're in pain or not, these docs can only guess at what you're going through!

    Good luck!
  • get another opinion. If I am too uncomfortable stopping my meds, I won't. He even told me to call him if it gets to be too much, because he doesn't want me torturing myself.

    He really has such a great bed side manner, and really sits and takes the time to explain things to me. I'm just so confused with what he is trying to do. He can see what my problem(s) are, but wants me off the meds to see my real pain? Uggg1

    Thank you all so much for supporting me. I appreciate it sooo much. I am so glad I found this board. I have been a member for almost 2 years now, and you all have helped me get through so much. :)

    I will keep everyone updated.

    >:D< >:D<

  • I don't agree with your PM Docs method, but I think I understand what he's trying to do. It sounds like he is trying to establish your true baseline. It is possible that the pain meds can be making your pain a little worse than it really is. That doesn't change the fact that it doesn't hurt.

    You sound like me about 5 years ago. At that time, I was told to suck it up and live with it. There will come a time when you start to deteriorate quickly, and that's when you will really need to act. Hopefully you can get this issue addressed sooner rather than later.

    I definitely recommend that you walk and stretch as much as possible so you can keep the nerves moving. Don't let the scar tissue bind everything up.

  • I'm like you, where I understand (I guess :) ) what he is trying to do. I'm just not really sure what it is going to prove. I guess I will find out once I'm completely off the meds and my body is done with withdrawl.

    Like you said, he said I am going to continue to get worse, and a fusion is inevitable. We don't know how soon, but it's coming.

    I try to move as much as I can, but I have to be so careful. My back is the type where such simple things cause back and leg pain. I just got back from the grocery store, and I couldn't wait to lay down. Mind you, my brother went with me, unloaded the cart, put the groceries in the cart, loaded them in the car, and carried them in the house. All I did was walk around the store grabbing items, and pointing at certain items he needed to pick up and put in the cart. Walking for any extended period of time, or sitting, causes my back to "freak out" so to speak.

    How did your fusion go? I'm assuming you're not pain free. Is it the same pain, or different pain? What level is your issue?

  • One silver lining - the less pain meds you are on before your fusion - the better the post-op meds work for you, that tolerance thing.

    My personal opinion - you need a discogram. Maybe you can only get a true reading on a discogram if you are off meds. I can't see that you would get a correct reading if you have pain meds masking your pain.

    My DH was on pain meds for years before his surgery. It did mask his pain. It kept him going even though he was getting permanent nerve damage from not having his discectomy. Because he went so long - the damage is permanent. His foot never came back. If he'd not had a pill-happy PM doc he would have had surgery earlier and would probably not have the permanent damage.

    The knife cuts both ways. (permanent damage vs. some increased pain - your choice I guess)
  • So, he can see you have all these problems and you probably need surgery, but he's going to make sure you REALLY SUFFER first? I don't think so! Go see a neuro surgeon or ortho NOW. If you need surgery, you need it. Just because Halloween is this month, doesn't mean you need some goul to torture you before you figure out what needs to be done. I'd ditch this guy ASAP. No need to suffer like that.


    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • My effected levels were L4 to S1. Both levels are fused now. They also did a lami at L3 for good measures. The surgery was a little over two years ago and I had my hardware removed last year. You can click on my name to review my medical history if you're interested. I also have a link there to my fusion blog outlining my recovery.

    Yes, I still have problems. I developed Arachnoiditis since my surgery at the L5 area. Not really sure what triggered this new development, but its probably a result of long time compression of the nerves combined with scar tissue formation after the surgeries.

    Maybe this Doctor understands that you have been having difficulties getting one of these surgeons to take you seriously. With a base line, maybe something will get you moving forward. Again, I do not agree with this methodology, but if it gets you to the prize you have to endure this for a little bit.

    I do know how you feel about the movement, I was there at one time. Prior to my fusion, I had to get out of bed 3 hours early so I could get ready for work. It took that long to get things loosened up so I could sit on my ass all day. All I can say is that you have to keep trying. Take short walks with breaks after. Don't let your back win. Keep up the good fight.

  • I really appreciate it. It's a scary road I'm on, but I'm just taking it one day at a time. I'm just hoping my withdrawl won't be as bad as the doc thinks it will be.

    Thanks again!

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