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hospital refused to do discogram

AnonymousUserAAnonymousUser Posts: 49,671
I've had an MRI, myelogram, physical therapy and nerve block so far, and my orthopedic doctor is still at a loss. He can't seem to find anything wrong, although the nerve block did kill the pain I was having at my S1 nerve root. (I have right leg pain all the way down to my pinky toe after 2 lumbar laminectomies.)

I decided to go ahead and ask my family doctor if I could have a discogram, at the request of a doctor I've been talking to out of state. I've talked with this doctor on the phone and heard great things about him. My family doctor decided to go ahead and order the discogram.

When I got to the hospital, I waited 2 1/2 hours for the doctor to come out and tell me he's uncomfortable doing a discogram on me. He said my MRI looks normal and the discogram wasn't ordered by a surgeon. He told me that this is a risky procedure and I should just stick with one doctor to run my medical care. I felt like a fool.

So I left, shocked and not knowing what to do next. I will return to the ortho. surgeon here in town who's now ordering an EMG, but is still at a loss. The doc. from the hospital is going to call my family doc. and tell her what he did. I believe he said he is also going to call my ortho. surgeon, even though he didn't order the test. (Does he have the right to do that?)

I'm concerned of course, that I will look like a "crazy person" who just wants to go from test to test in order to "get attention." I sure don't want doctor's to get this impression, being that the pain in my leg has stopped me from living my life. I just don't want to give up yet as far as trying to find out what's going on.

I see the ortho.doc. May 4th, and am asking for any suggestions on what to say when he starts quizzing me about the discogram. Can anyone give me some advice on how to explain that I just want to find an answer? I believe that this doctor will no longer want to treat me. Does anyone else have any thoughts on this?



  • sunny1966ssunny1966 VIRGINIAPosts: 1,385
    I hope you can find out what is causing you continued pain. I started to give you advice on dealing with your doctor but I can't do it because I can't deal with my own.lol I hope you feel better soon. Good luck with the ortho.

  • I can certainly sympathize with you. I have had a fusion and a lami-foramenotomy in the past year and still have the same sciatic pain. I too am more interested in chasing down the cause of the pain than receiving prescriptions for pain meds. It is very frustrating.

    Is your ortho the only game in town? Was it a PM doc who refused to do the procedure?

    What is your main reason for your appointment with the ortho in May? If I were in your shoes, if the topic even comes up, I would explain to the ortho that you consulted with a surgeon in another state, in an attempt to get to the bottom of your pain issues. Explain that your pain is keeping you from being able to live your life and you are searching for answers. I would just tell him what happened...and see what he says. It's not like you have a long-term contract with the ortho. You are entitled to shop around, just like you would for any other product.

    I had my second surgery with a different surgeon from the one who did my fusion. And, he had just joined the clinic where the first one is located. When I inquired if this might be a problem, he told me just what I told you in the preceeding paragraph. Doctors realize that there might be more than one way to approach a problem and that you are entitled to search for an answer.
  • Thank you so much for the encouraging words. No, this ortho's not the only one in town. However, he has spent so much time with me and really discussed things in detail with me. (Others have not done that.) I don't see how I'll be able to go to another ortho or neuro if my primary doc. thinks I'm nuts for asking her to order the discogram. She's the one who would need to send me to one.

    The doctor who refused to do the discogram was the actual doctor who was going to perform it in the hospital. I don't know exactly what kind of doctor he was, but he came out with his nurse and began explaining to me why he didn't feel comfortable.

    The reason I'm going back to the ortho is because he's going to bring up my case with some other physicians at a physicians conference. He wants to get their ideas on what they would do or think. But now, who knows what he'll say to them. "She's trying to treat herself..." Who knows. And they'll laugh and say, "I wouldn't touch her." He also is having me come in for an EMG this coming Tuesday. If that shows something, maybe he'll believe that I have pain coming from that area (L5-S1). I'm totally confused, because he had me do a nerve block to see if it would relieve my pain, and it did. But then... he still doesn't know what's wrong. What a waste of time and money - having a nerve block done for diagnostic purposes, and then....nothing.

    Basically, my main concern is... I've ruined any chance with this orthopedic doctor continuing to search into things for me. I think your advice on just telling it the way it is, is the right thing to do. I will tell him that I'm just trying to get to the bottom of this, because this pain has limited me so much. Maybe if I tell him that when he said he wasn't sure what's going on, I felt that getting the discogram was at least another attempt at a diagnosis. I wasn't trying to go behind anyone's back, just listening to yet another doctor's idea.

    Thank you again.

  • If the ortho is really annoyed, you could just apologize and tell him the pain is making you crazy! Just kidding. You could apologize and just continue explaining that you are desparate to find answers...and ask him about the block you had and was it diagnostic and what did it show?

    When I have had those diagnostic blocks, I never felt one bit different. The surgeon that performed my second surgery looked at the MRIs and read the nerve conduction study and the EMG and pretty much based his decision to do the foramenotomy on the EMG. Short of getting in there and doing exploratory surgery, (which they are loathe to do because of the scar tissue issue and just the danger of making the patient worse than prior to the surgery) the docs have to depend on what they can learn from the imaging and whatever diagnostic tests they order. It is not a concise science.

    It sounds like your ortho is interested in helping you and is trying to find the answers. I would just wait to see if he brings it up. Do these doctors all work out of the same hospital? Anyway, just be honest and explain that the phone doctor suggested a discogram and you thought it might help get to the bottom of your pain issues. And you didn't think about the consequences of your action -- that your ortho might think you were trying to go behind his back....It sounds like you need to keep this guy on your side and that he is trying to help you.

    Is the EMG done at your ortho's office? Who does it?
  • I've been in this situation as well and I can get fired up over it too! (climbing up on a soap box) If we are paying and it's our bodies and we aren't getting anywhere, what's wrong with getting your GP to send you for the discogram. I don't see how the hospital guy refused the orders. I mean, who's he to do that? If anything was seen, the results would go back to your GP, then the ortho or Neuro could get a copy from your GP. It shouldn't have mattered as long as it was a medical doctor that ordered the test.

    Do not apologize! Do not feel bad that you tried to get further in your search for relief! You didn't do anything wrong at all or illegal or unethical! Keeping loyality is for the birds when you are hurting! It's not an issue of going behind their back, it's about being your own advocate and trying to get some action. I get so tired of trying to be patient while they charge you to go through weeks and weeks of their own guesswork on you, checkups, and doing nothing. I realize that it's a science and everybodies different but come on...there should be a limit to what we have to endure to if it's possible.

    My NS ordered the myleogram and discogram to be done back to back to get it over with. It wasn't fun at all, but we had an answer after it was done, luckily.

  • I think there's a possibility that the hospital doctor wasn't comfortable getting that discogram request from a primary care physician. Usually OS, NS, or pain mgt will order that test for you. When we first injure our backs, the first stop is the PcP and if it is a complicated back pain, he'll order an MRI.

    I hope that your ortho doctor will understand that you're merely trying to figure out what is wrong. You were just following advice from another doctor and there shouldn't be any conflict. Who wants to go around having pain and not know the reason? That would drive me nuts.

    What did they say about your scar tissue? I have it too and it was seen on an MRI and my doctors are taking measures to treat it. When that scar tissue pain became acute, it was one of the worst pains I experienced. It felt like my back got hit by lightening and the pain shot down my leg. I fell over but didn't hit the floor thanks to my husband's quick reflexes.

    Maybe your OS will come around and order the discogram so that you can find out for sure what is going on. Just ask him if it is appropriate since the other tests were inconclusive. Someone has to do something to help you.
  • What are your doctors doing about your scar tissue?

    Also what kind of effect are you having with cymbalta? How long have you been taking it?
  • Thank you so much for your help everyone. I agree that it shouldn't matter what kind of doc. orders the discogram. However, I obviously don't have a say about my own body. I don't dare upset my ortho surgeon, since he's spent so much time listening to me - more than any other doctor this far. Maybe he just wants my money. I'm starting to wonder. But the fact that he still wants an emg done says that he's still looking into things. Maybe he'll just see that I'm desperate and eager to get on with life.

    Gwennie, you said you'd wait until the ortho brings it up first. Just curious... don't you think I should bring it up to get it out of the way? If he's already formed an opinion about me and doesn't want to discuss it with me, I won't have a chance to explain myself if he doesn't bring it up. (Sorry - long sentences.)

    The doctor at the hospital does know my orthopedic surgeon. And I believe he said he was going to call him. Does he have the right to do that if the order wasn't from him? The order for the discogram was from my family doc., not the surgeon. It seems like the doc. at the hospital wants to cause me problems for who knows what reason. Even the hospital doc's nurse started telling me to only have one doctor take care of me. She insisted that my ortho is a good doctor over and over. I told her I knew that, and that I am just trying to get answers.

    I don't feel I should have to apologize to any doctor; however, this is the 2nd doctor here in town I've seen for this, and they all seem to know each other. They talk about each other by their first names, so everywhere I go, I feel like the doc. before is making decisions for the current doctor. And I don't have money to waste on things like that. So I almost feel like I have to kiss their a.... in order to get care. (sorry, I don't know how else to put it.)

    Again, thank you. And I AM DEFINITELY using these suggestions at my next appointment with my ortho.

  • I'm sure your in alot of Pain and you Probobly have something Seriously wrong with you. Sometimes nothing shows up on a MRI. I'm guessing the Dr. Refused to do the Procedure because of certain Guidelines he hasto go by and he Probably wasn't aware of the Real Pain your In. Don't feel like a Fool! They messed up they should have Researched your Condition before coming. I assume he's probably afraid of the Risk involved with this Procedure and he being Responsible as a Dr. if something went wrong. It is annoying sometimes when Drs. don't understand the Pain were in and Treat us as if we don't know anything. I think the Dr. who ordered your Test meant well but probably should have known if they would accept you or not for the Procedure. Man I wish you didn't hafto go through all of this. it happens to alot of People I'm sure. Write a Letter to Voice your Concerns to that Drs. Office. Explain that you wish the Dr. did his Homework & they Called you before coming. Just think though it's probably better that you didn't get the Procedure bcs things happen sometimes for a Reason. Imagine if you did get the procedure and it only made your Pain worse.
    Have you had an EMG test done to Test your Nerves and Muscles? This is another Test they can do to Rule out other Symptoms that won't always show up on an MRI. I would ask the Dr. if he Recommends other Test like an EMG. Don't give up on Searching for Answers. Be your own Advocate! Research, Read and continue Asking your Dr. for help. If you don't feel your getting the Help you need request another Dr.
    I hope it all works out.
  • Hi Gwennie, well.. when they found it, I was immediately scheduled for an ESI. The doctor did discuss options like lysis of adhesions and SCS and stim implantation. The ESI caused me more pain and grief, and I'm weary of having the lysis done because they go in caudally and I heard it's more painful. My meds were adjusted and they are willing to try other meds if necessary. I've been on Cymbalta for 7 months and I've tolerated it very well. Don't take it in the evening or else you'll have terrible insomnia; take it first thing in the morning. They will start you at 30 mg and titrate you up to 60 in 2 weeks.

    CSP, can someone go with you to your ortho appt for support? That way there is less chance of things going south. I do hope your doctor is open to suggestion and doesn't resent the PCP for referring you for a discogram. Did you get a chance to ask the doctor at the hospital why he wants to talk to your ortho? You certainly have done nothing wrong and I'm sorry you have to worry about what's being said privately between these doctors. Hang in there and have faith that things will go in your favor.
  • You know your ortho best...so just go with your instincts. I was just thinking that if the doctors have talked and he has processed the information and does not bring it up to you, you could just move ahead and cover new ground. I imagine you are giving this situation a lot more thought than he is!
  • I'm so thankful I have all of you to get me through this. I'm feeling much better about this now. I was really concerned about what the doctor might think, but I'm just going to have to explain to him that I'm not ready to give up. I can understand not wanting to do surgery, but testing for what's wrong shouldn't be such a big thing. One of my friends around here also suggested someone going with me to my next appointment. I think that having someone go with me could either help me or hurt me. It depends on what they say. My mom, for example, could make things worse I think. She would say too much and come across like she has to take care of me and I'm helpless. That's not true. Others could help me with their words, but I wonder what the doc would think if I had to have someone sit and "hold my hand." I'm not sure what I'm going to do. I just know I'm tired of the appointments, the money spent and the fact that I have to prove I'm stable (in the head, that is) in order to get adequate testing. I know a discogram is risky, but I've been through one before (20 years ago) and I'm not 20 anymore. The doctor at the hospital insulted me by saying, "This is the most normal MRI I've ever seen for a 42 year old woman." I almost said, "Well, this isn't the most normal pain in the leg and back for a 42 year old woman. And that's why I'm here." But I held my tongue.

    Anyway, just rambling. I do appreciate everyone's interest in my circumstances. It really helps to have people understand and voice their opinions and ideas.

    Thank you!!!

  • If you don't mind, could you tell me what your symptoms are currently? When do you have the pain? What relieves it, if anything?

    Has it been getting continually worse since Sept. or did it suddenly get worse in Sept. and you've been dealing with it since (at about the same intensity?)

    My second surgeon will conduct the exam, look at the MRI with you, and then give you a diagnosis and explain that you need surgery. He then asks that you return in a couple days with your husband, or another person, at which time he goes into detail about the surgery, answers questions, etc. He said he knows from experience that the patient is usually in shock after hearing the word "surgery" and his/her brain kind of shuts down. S/he does not take in any more information after that point. So he has the patient return with another person so the two can take in the details together.
  • Actually, today and March 27th have been the worst days, as far as pain go. It starts at my right back, down butt, outter back of leg, down calf and through outter foot to pinky toe. It's at about a level 4 pain right now, and has been since about 2 or 3 pm. (It's 7 p.m. now). The 27th I had to sit all day in the hospital while my son had surgery, so sitting was just horrible. That's when the pain is worst. Also, when squatting down. The only time the pain is gone is when I lay down on my stomach. When the pain isn't so bad, it's at about a 2 pain level and the pain is mostly in my outter foot and pinky toe as well as my outter calf.

    September, 08 is when my pain came back after having surgery in May, 08. The pain has been bad, better, bad, worse, bad, better.... you get the idea. Lately, though, it's been worse. I'd say for about the last 2 months, it's been getting worse. The thing is, why is the doc still going by an MRI done in Sept/Oct, 08? It's April for Pete's sake and the pain has increased. I just don't get it. (Sorry, rather angry right now. So so so frusterated by this whole thing!)

  • I think the MRI may have to do with insurance. I think one every six months is about all they will routinely pay for without jumping through many hoops.

    Do you think you herniated a disc? Or, what do you suspect?
  • Yes, possibly - herniation. I did something horrible today - I know that (how ironic). I haven't had this kind of pain since I don't know when. My entire leg hurts (On the outside) rather than just my calf and toe. This is horrible. It's almost been 6 months now for the MRI. I had it in October 08. When I see him May 4th for a regular ortho visit, maybe he'll consider if I tell him that I've been having some really bad days of leg pain.

    Do you know how accurate an EMG is? If my leg pain comes and goes, will it still be able to tell whether or not the nerve is being irritated? There's a very very small indentation into my S1 nerve root on the MRI and myelogram, so something must be rubbing on the nerve - I hope it's enough to slow down the EMG and give proof of this. I have an EMG done Tuesday, and I'm hoping for some answers. The EMG is done right in the ortho's office, which is nice, but he isn't the one who's doing it. Maybe I'll ask if they can tell anything Tuesday.

    Before my very first surgery (22 years ago), I had an EMG and was surprised to see that something did show up. I say "surprised" because the CT scan hardly showed anything (just a bulging disc).

    At the next appointment, I will probably be letting the doctor know how very frustrated I am with this whole process, especially after being sent home Tuesday. I will let him know that I'm not upset with him, but with the fact that I'm not supposed to want to get to the bottom of this. I'm supposed to just sit and wait and live with the pain. The part that gets me the most is that all the tests have not been run that can be. The discogram is supposed to be very specific - this is exactly what is needed. I've read up on why doctors do the discogram on several websites, and the fact tat my MRI and myelogram aren't showing much are some of the main reasons why.

    Anyway, I'll stop now.

  • Yesterday I decided to call my family doctor to see what the hospital doctor had to say to her about the discogram. Rather than getting a call back from my doctor, the nurse relayed this message... "Dr. W. said that she's no longer able to order tests for you. You will have to go to your neurosurgeon or ortho. for that." I guess this tells me that she wants nothing else to do with me. Isn't that great?!

    That's the latest.

  • All I've ever read or heard indicates that an EMG is only as reliable as the person who is giving it. There can be plenty of room for misinterpretation. As I understand it, yes the test will reveal the health of the nerve, how well it is receiving the signal from the brain.

    The fact that your leg pain comes and goes has more to do with what is pressing on the nerve.

    My PM doc, my ortho and my physical therapist were all telling me my symptoms were indicative of L3 nerve compression and said my MRI also showed a lot of stenosis at that point. I also thought I had peripheral neuropathy. When I had the emg and nerve conduction study, I could tell the doctor kept repeating certain parts of the test and his body language indicated to me that things were not adding up.

    After the test I asked him what he found and all he would say was that he needed to go back and review my MRI films and study the results a bit more. Turns out I do not have peripheral neuropathy at all...and I had chronic radiculopathy at L5--worse in my left leg than my right. (All the pain I feel is on the right.)

    So, at best, all these diagnostic tools are at best, a guide to what may be causing the pain.

    Just out of curiosity, is your family doc female and is the discogram guy male?
  • Yes, my family doctor is a female and the doctor who was "supposed" to run the discogram at the hospital is a guy. Why do you ask? The doctor at the hospital also said that he knew my orthopedic doctor (also a guy) and that he is a very good surgeon. He almost acted like I was going behind his back by asking my family doc. to order the discogram. In fact, he insisted that I stop trying to run my own treatment plan. He said, and so did his nurse, that I need to stick to one doctor. I, however, do not believe that. I feel that I need a number of opinions. Doctors are also human and have their own ideas and thoughts.

    At my next appointment, I will be letting my ortho know that it was my impression that patients are encouraged to get 2nd, 3rd, etc. opinions. I will also be letting him know that I was doing just that, and that I was following the advice of a surgeon I had spoke with in another state. I've got everything written down as to what I'm going to say. And I'm going to actually "memorize the script" this time. There will be no mistakes in what I say, and I will make sure the doctor understands that I am the one in pain; I am the only one who has to struggle each and every day and I am the one who has to pay for these tests that are being done. I will also let him know that I am having to find and pay someone to come into my home and watch the daycare children each time I go to yet another appointment. I will either bring my husband or a friend with me to support me this time, and I will explain what happened at the hospital. He will also hear that I have been 100% honest with doctors and that I'm just trying to get to the bottom of MY pain, not the doctor's pain, but MINE.

    (Can you tell I'm just a little upset with this whole issue?) :)

    It's funny how it's been 7 months I've had this pain, and the doctors want me to be patient. HMMMMM. I thought I was.

    Thank you so much for supporting me in this.

  • I have heard that doctors can get irritated quick when they feel like they are being second guessed. I have run into some who don't like patients being proactive about their care. I think that the ortho may not like the fact that you are listening to another doctor who has never examined you. I'm just speculating as to why this is going on.

    Anyway, you have a good game plan and hopefully things will work out and they'll order the discogram. I would think it is appropriate to have it if the other tests were inconclusive- that's my 2 cents. Just stick to your plan and memorize what you're going to say and you'll be fine. Take care
  • I just wondered because there is a certain hierarchy in medicine with certain specialists feeling what they do requires more intelligence, better technique, etc. than other specialties. I don't believe it was the PM doc's position to refuse to do the test...and that he would call up your family doc to make his displeasure known just made me wonder if he would have done that if she were a he!

    I fully understand why the PM doc did what he did. I just really question whether he had the right to do that.

    I don't think the issue is whether you have a right to get multiple opinions. I don't think anyone would argue that. But you would not normally have two orthos treating you at the same time. One would not know what the other is doing and their purposes could be counter-productive. I can understand why the PM guy objected to that.

    Like we talked about yesterday, just explain what occurred and that you are frustrated by the lack of progress in getting to the bottom of your pain, etc. You will do fine.

    Incidentally, I do have one question. Did you and your ortho talk about you having a discogram? I just wondered why you didn't ask him to write the order rather than asking your family doc? I gather you are still under his care....

  • if scarring is suspected, be sure that the surgeons are reading the films and not the reports...i have had multiple mri's done by the same facility that constanly says no major change to my scans...pre and post op!!!!
    has not noted scar tissue that new orthopod says is so involved as to make removal of current hernations too risky!
    (must basically have CES to operate)
    stand up for the tests and care you feel you need...i didn't.
  • Gwennie,
    I kind-of asked the ortho to have one done. What I mean is... first he asked if I wanted to have an EMG. I told him no because of the bad experience I had a long time ago, and the pain. I told him I'd rather have a discogram. He didn't respond at all to that. Then he said something about getting a psychological pain eval. done. The red flags went up for me. "Does he think I'm exaggerating? Does he not believe me? Does he think I'm up to no good or something?" I attempted to get the psychological exam done, but my insurance doesn't cover it and it's $800. I said no to that. Then he told me he was going to a conference coming up in 3 weeks, and did I mind if he ran my case across some other doctors for some other opinions. I said, "Yes, that would be great." After being home a day, I decided I would take the chance and have the EMG. So, I called the ortho back and told him (his nurse). The EMG is set for Tuesday. The whole reason I went ahead with the discogram idea from my family doctor is because the ortho was starting to also look for other opinions from other doctors. I figured he was stumped and it wouldn't hurt to, then, go ahead with the whole discogram idea. (I waited at least a month before asking my family doc. to do the discogram. I wanted to visit my ortho one more time first after having a nerve block.) Like I said, the only reason I went ahead with the disc. idea was because my ortho seemed to not be sure of what was going on.

    Oh yes, and the doctors have been reading the films, not so much the reports. They put them right up on the screen for me to see.

    Sorry so long. Trying to explain the sequence of things. :)

    Any other suggestions on my upcoming appointment would be great. The more suggestions, the better. :)

  • Well, if you just explain things just like you did in the above post, I think he will understand.

    And I would push him about the scar tissue and whether than could be the source of at least some of the pain.

    And ask about having a new MRI since perhaps an adjoining level has herniated...or?
  • Yes, that's the plan. I am going to tell him what I told you above. I will definitely ask about the scar tissue. And I was planning on asking about a new MRI. If he refuses, I will ask why I can't get one. Insurance is not an issue, therefore, there should be no issue.

    I just got done talking to one of my daycare parents who stopped by this morning. She told me she used to go to the same office as I am now (Dr. R's office). She said that she left that office because all's they did was send her from one test to another (in their office, not at the hospital, of course)and never did anything about anything. (Sounds like they're trying to make a little money, doesn't it?) She went to another office because of that and had surgery, and is doing great now. She gave me the name of her new doctor who did her surgery. I will see Dr. R one more time and see what he has to say. If nothing, I'm going to have to move on I guess. I don't like jumping from one to another, but it's been 7 months, and I'm tired of waiting 2 months just to have another test. It's exhausting and never ending. It really does sounds like they just want to have you keep coming back if they don't think they can do anything. I don't want to keep spending $70 every 2 months or so just to keep them in business. That's not fair to patients.

    Well, enough said. Thank you for spending so much time talking to me about this. Your support means a lot to me!

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