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losing trust in your NS

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:21 AM in Back Surgery and Neck Surgery
Well I went for my 5 month post op visit Monday. I was aggravated when I left there. I usually see one PA but this time I saw another one. Last time I saw him he didn't have a clue what he was talking about. All he did for me after a reherniation was told me to take Ibuprofen otc. I had to mention another epidural. I wouldn't be there if Ibuprofen otc would have helped me. I would defiately not have had surgery thats for sure. Now this time my diagnosis is unknown but this PA thinks there is some free floating disc material that he didn't get during surgery. The last PA I saw last month said my pain is "discogenic" from degenerative disc disease. So which one is it? Do you see where I am getting aggravated now? Well the only good thing that came out of this visit is that he ordered another MRI. I am going to have the drs I work for "pain manangement anthesiologist" review my MRI. I am supposed to go back and see the surgeon on Monday. I don't know what to do. It's just aggravating not knowing.


  • RangerRRanger on da rangePosts: 805
    Cindy, talk about frustration! Have you considered another N/S, clinic, PCP?
    You need to get some peace of mind here, you need some solid answers.
    Take care,
  • I am going to go do this MRI tomorrow and we will go from there. I am going to have my boss look at it and see what he thinks then see the NS. I found a PCP who is willing to help me deal with my pain. I am not sure if you have read any of my previous forums. My NS, when I called him and ask for pain meds wouldn't help me. He said I am not chronic pain and he don't write meds for chronic pain. This is where it aggravated me. How am I chronic pain if they don't have a clue what's going on? How do they know its not just something that is acute like another disc herniation? I work for the only chronic pain clinic around. I can't be a nurse and a patient there. So then I went to a PCP that refers to us frequently at our clinic. He came in and introduced himself one day during his lunch hour. He kinda stuck with me. He was a very intelligent and nice person. So I decided to go to him and tell him my situation. He said he would be more than willing to control my pain to keep me out of a fusion as long as we can. He was wonderful and actually I see him in the morning for a followup and pain med refill. I feel as if nobody takes me serious because of my age. I hate to hear practioners say that the young ones only wont drugs. Not true at all.
  • RangerRRanger on da rangePosts: 805
    Cindy, do the MRI and see this PCP, maybe it will all work out well for you in the end. I know the waiting game is the worse part, it sort of wears on you.
    That was a pretty lame comment of the saying that "all the young ones want
    drugs". Keep pursuing this aggressively Cindy, we cannot depend on anyone
    else to get the answers we need. Keep us posted here with your findings and
    best of luck to you!
  • I guess sometimes we have to search for a doc that will understand and help. I hope you found that right someone who can really help you.
    Good luck in the morning!
  • Thank you guys. I don't give up. I have been through alot of stuff in the last 15 years. My health problems started when I was 11 years old. I does wear on you. It sucks to be only 26 years old and in alot of pain. It makes you wonder what quality of life you are going to have in the next 20-30years. I just want things to start looking up for me. I have a 1.5 yrs old son and I want to play with him and not have to pay for it afterwards. This PCP was wonderful the last visit. I hope is that way tomorrow. Its nice to have someone just sit down beside you and talk to you for about an hour. It wasn't like sitting down and talking to a normal dr. He seemed understanding and caring. The only thing is if I do need surgery again I am going to have to find another NS. I don't think I want another operation by this one. It may be just a coincidence that all of these problems started after my second surgery, but it just scares me. I just want answers. Why am I hurting? I know sometimes that is hard to answer. My hips probably caused my back problems initially. I walk with my hips externally rotated at least 40-60 degrees. I know that don't make things any better. I don't want to do hip replacement to fix them right now because they don't hurt so they will have to stay externally rotated until then. I know when your gait is off it can cause stress on your back. So I don't know if its the combination of all of this together or what.

    Sorry this is so long. I just have so much to say and I just need someone to listen.
  • I wish you was close to here. I have doctors that believe people have pain and that it should not ruin their lives. In the 6 years I have been with Azalea not once have they NOT taken my pain seriously and argued with me about meds. In fact they are more inclined to fuss at me for putting up with pain when they don't want me to.

    So keep complaining and looking for someone who will take you seriously. My thoughts are with you. =D>
  • Cindy,

    You're so right to take charge of your care. After my first ACDF I kept telling my ns that someething was wrong- I knew it was wrong when I came out of anesthesia. He kept putting me off until I had an entire muscle in my arm atrophy overnight. THEN he finally ordered an MRI. He still kept telling me that all was okay, even though my condition was deteriorating rapidly.

    I finally got a copy of that MRI and took it to my neurologist who took one look at it and got on the phone with another surgeon. She begged him to take me on as a patient because my neck was in such horrible shape. Another surgery later and although things aren't better pain wise at least I know I'm not going to lose more function.

    It's hard to trust doctors when they keep putting you off or treating you like you're not smart enough to understand what's going on. Trust your instinct and, if you feel that something isn't right, seek another opinion as soon as you can.

    Good luck to you,

  • RangerRRanger on da rangePosts: 805
    Cindy, there are a lot of us here that do care and are willing to listen. Many of us have gone through or are going through similar situations and we all need some support at some time. There isn't a day that goes by and I think about how lucky I am to have such a good team of Dr's behind me that keep me active and able to do the things I need to do. Stay positive and take charge of
    your health concerns, I as well as many others here know you will do well.
    Just look at all these postings of support you have received so far!
  • I'm pleased that they are doing another MRI - IMHO you should have had one of these weeks ago given how much pain you're still in. I hope you get some answers, without a scan it's impossible for the surgeon's office to know for sure what's causing the pain, but they are going to be reluctant to admit that there may be some disc material floating around as it makes it look like they have screwed up - and they aren't going to do that!

    Let us know what the outcome is. Hugs, Spicey
  • I'll keep you in my thoughts and keep my fingers crossed that you get the answers you need and that you dont need another surgery this year. You are so young and ou should have a good quality of life virtually pain free. Dont give up girl.

    Good Luck,
    Christina :)
  • Do you have options in finding another local NS? Or will you have to travel. I know some people have traveled a LONG way to find a good NS. I just wish you didn't have to go through all the junk to get what you need!

    Good Luck and stay tough - we'll be here to keep your courage up with you.
  • Well I went for my MRI today. I wish I knew how to read this thing. It drives me crazy knowing I have it and can't figure it out. I have a little experience reading them. I know for a fact there is a disc herniation at 3/4 but 4/5 is so deformed because of the 2 surgeries that I can't tell much on it. I can tell that there is Degenerative disc disease and no fluid in all the bottom 3 levels. I am going to let the NP i work for read it in the morning.
  • I probably will have to travel to find another NS. I don't know how it is everywhere else but in TN once one surgeon operates on you, it's hard to find another one that will see you. My husband wants me to go to Duke. I don't know what I am going to do. I guess once I get my results back from my MRI, I will decide what to do.
  • Try not to get too bogged down worrying about what's next until you know what the correct interpretation of your scan is. I hope you manage to get something sorted out soon. It will be worth traveling a bit if you can find a good surgeon. Good luck and keep us posted.
  • Just to clear your concscience maybe you should get a second op from the guy at Duke. Just listen to him shouldn't hurt to much.

    Feel Better,

  • I was wondering if others had the same problem I had - that once you are with one NS the others won't touch you.

    I asked my insurance for a second opinion but was told that the NS community really frowns on people who change NS's.

    I wondered if it was a drug-seeking prevention thing or what?? I mean, I just thought it was tremendously unfair to feel like I would be penalized by seeking a second opnion.

    Fortunately I got some really good recommendations before I choose and saw my NS. After I quized him about his methods I was glad I had chosen him too.
  • Here's my MRI results. No free floating material.

    L1 to L2/3 no abnormality

    L3/4 There is persistence of a right paracentral disc protrusion overall there is no evidence of significant stenotic disease or displacement. No foci of abnormal enhancement are identified to suggest a residual disc fragment.

    L4/5 There has been a left hemilaminotomy and leftward discectomy. And no definate foci of nonehancement identified to suggest a residual disc fragment. Some mild epidural enhancement is identified consistent with fibrosis. Previously identified left lateral recess narrowing is slightly improved. NO definite evidence of significant stenotic disease or displacement identified.

    Impression: Disc disease at L3/4 and L4/5 with possibility of small recurrent/residual disc still present at these levels.

    It really don't go into as much detail about the DDD as before because it is unchanged and this MRI is a comparison.

    So what do you think. Could all of my hip and leg problems be from referred pain due to DDD. One of my problems is the way I walk because I have had mutiple surgeries on my hips, I walk with my entire leg exterally rotated. You know that probably causes more mechanical problems with your back. I am now worried that this means there is new issues with my hip. Which that means probably hip replacement for me. I don't know. I had 2 NP's read my films. They both said there is nothing I should do surgically at this point. They both told me that the NS would probably recommend a fusion but I shouldn't do that. They also said I have a disc herniation at 5/1 which the report didn't show and they said I have quite a bit of stenosis at the left 4/5 level still which the report don't show and disc bulging with scar tissue. They also said that I have alot of facet arthritis. This is 2 different NP's reading it at 2 different times. I hate to say this but I trust them more than I do the radiologist. They sat down and looked through it and took there time.

    I don't know which one is worse my stupid hip going out and needing replaced or this back pain and leg pain.

    If its not really coming all from my back then whats the point of going to Duke. I go back and see my NS on monday to review the results. I guess we will see what he says. Who knows.

    Today at work was a very bad day. My hip and the back of my leg was hurting so bad and we were so busy and short handed. Then I got the report of my MRI and still no answers. Now more concerns that I have maybe 2 totally different problems going on at the same time. My poor mom met me on my lunch break. I tried to be so strong but I just busted out in tears. One of my friends at work came in to just talk to me today and I busted out in tears to her too. I went and appologised to her but she told me we can't always be strong and sometime its help to just let it go. She made me feel good. She told me she respected me for even trying to work. Most people give up and don't work and here I am crying because I can't do it. I am frustrated. I just want a break. I keep thinking why does crappy things have to happen to me. 26 years old and I have spent the last 15 years of my life in and out of MRI, Bone Scans, X-rays, 6 surgeries, and mutiple night stays in the hospital. I feel like I am selfish for thinking about me all of the time. I just can't help. I want to be strong but its getting so hard to just not sit down and cry because you are tired of hurting and going through all of this stuff. I know if my MRI was unchanged I should have been happy that nothing is worse from 4 months ago but all I can think of is now that means that my hips are an issue too.

    Sorry the long post. I really appreciate your responses.
  • You know we all understand about needing to cry from the pain and frustration of it seeming like nothing is working in your favor. And those future stars - we need them now!

    I sure hope you find some answers as to what is causing all the pain. If you was closer to TX would recommend my set of drs. They tell you the truth about what they can or cannot do. The surgeon I used for my back saw my Dad 10 years ago and told him that he couldn't fix his back, but could maybe give him some relief. That so impressed me that I knew I wanted to use him myself.

    My thoughts are with you as you carry on with your life in spite of what it throws at you. =D>
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