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Now I am a surgical reject

painfuldyappainfuldya Posts: 17
edited 06/11/2012 - 8:39 AM in Back Surgery and Neck Surgery
As of two weeks ago, I had a choice between two surgeries, a fusion from a neuro and a microdiskectomy from an ortho. I decided to go with the microdiskectomy because it was less invasive, the hospital the doctor worked at was much better and the doctor himself was much more responsive and didn't disappear when I had questions. Also the office staff were great. Anyway, the ortho scheduled me for a presurgical MRI. He had decided to do a microdiskectomy on L5/S1, which is my biggest herniation. On this latest MRI, the herniation on this disc looked a little smaller than it did in August. Let me explain-it wasn't gone, it was just a tiny bit smaller, about the same size it was in December of 2008. To clarify, I have had three MRIs recently; one in December 2008, one in August 2009, and one last week, and in the one last week the herniation had shrunk since August. Of course, my symptoms hadn't shrunk with it! Anyway to make a long story short, this ortho who had I decided was so great decided that I was not a surgical candidate although I have a new herniation at L3 pressing on a nerve (he said that one was too small) and a very degenerated disk at L4/L5 (he said annular tears are the gray hairs of the spine and there isn't anything to do about them). I don't understand how I went so quickly from having a surgical date booked and having my pre-testing done to being "not a surgical candidate."
Anyway, I tried calling the neurosurgeons office again. I hadn't told them I was canceling the surgery to see another doctor, I just said I had to postpone because of logistical reasons involving postsurgical care. I asked for a consultation with the doctor, because I had a new MRI and and therefore new information. He set me back a nasty e-mails saying that he'd already spent extensive periods of time talking with me (two whole appointments) and if I wanted to consult again I would have to speak with his junior partner if I wished. I sent back a very polite e-mail saying that I would be happy to consult with his junior partner and haven't heard a word. Surprise, the office staff is pretty mean anyway, but I thought the doctor was at least a nice guy. Anyway now I'm at a loss because all I have is a recommendation for a new pain management place and I have tried every sort of pain management under the sun, except for radiofrequency nerve ablation. I'm willing to give that one a go ahead but I hesitate because it's temporary. As for injections, epidurals kill me, facet blockers help a little bit but don't make the problem go away, and trigger point injections only work on my neck. PT is good and I do it every week but if it had solved the problem I wouldn't be running around to surgeons. Same for acupuncture. Does anyone have any suggestions? Or even any similar experience that they want to share? I couldn't sleep the other night because I was crying so much. I almost attempted suicide, I am so sick of this miserable life. I just want to go into a store and buy someone a nice holiday gift, but the only thing that I could carry would be a pen. Not a heavy one either
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Comments

  • Oh no! I'm sorry you're having such a hard time. Please don't attempt suicide, next time you are thinking that way log onto here and send me a PM. I am online a lot and if you need to vent, talk, anything, just feel free to write me.

    As for your surgical situation, there are other doctors out there. It took me 10 years to find the right one. Take a deep breath and look and see who else you can contact. Now you know exactly what to ask them when you contact them. I promise it will get better.
  • I'm sorry to hear about your predicament. What did you OS suggest to do now that he said you're not a surgical candidate? More PT, injections? What about ordering a ct/myelogram? My OS sent me in for one after deeming me a surgical candidate so that he could confirm the nerve compression. They also use it as a road map for the operation itself. Once he reviewed the results, my OS was comfortable proceeding with a microdiscectomy.

    The ct/myelogram gives a better quality than an MRI and I think it would be so helpful in your case. Of course it's up to your doctor to order it and I couldn't see why he wouldn't want to since your diagnosis is in question.

    I don't know what the deal is with the NS. Maybe he feels brushed off or something and that's why he lost his patience. You also need to be weary of a doctor being in a big rush to do surgery. You need to feel confident that you're doing the right thing. If you don't hear back from that office then maybe it's time to move on.

    So the choice is between staying with the OS and following a nonsurgical course, or looking for another OS or NS to see if they will operate. You also need to know that spinal surgery doesn't always work and that once the spine is operated on, there is a chance of needing additional surgery. It's a difficult decision to make and you need to feel that it's the right thing to do. Take care

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  • I also want to add, have you seen a pain management doctor? Maybe you can find one you like and he can treat your pain non surgically. Just a thought. Try to keep your chin up, there are always options.
  • I'm a bit confused by what went on at your appointment. However, it sounds like it is time for a new doctor. For whatever reason, it sounds like the neurosurgeon is not a good match. I'm not quite clear what happened with the ortho. I guess he must have concluded that since the herniation had decreased in size, there is a good chance that it will continue to get smaller and will be reabsorbed by the body. He may have concluded that since you have three areas that are all approximately in the same condition, and none of which are large enough to operate on (in his opinion), he does not want to go ahead and try to fix one. He cannot justify doing all three because that would mean fusion.

    Realize that I am just GUESSING here. @) Remember that in this day and age, doctors are not only trying to make the best decision for the patient, but they also have to be able to justify what they are doing to the insurance companies, and are second guessing what would happen in a trial court if that situation arose. The surgeon cannot, in good conscience, operate on you unless he can justify his surgery to these two other entities.

    In your case, when he looked at the older MRIs, he felt you needed surgery. When he ordered a new MRI prior to surgery, things had changed sufficiently that he no longer could justify the same surgery. Would that be a correct understanding of what happened? What specifically did he tell you? If you aren't a candidate, what are you supposed to do for the pain?

    Gwennie
  • I had that two weeks ago. One NS recommended surgery. I went for a second opinion and before she even examined me or talked to me the doctor said I'm not a surgical candidate. Basically it was because I could get myself to her office!!

    Gwen is right. Doctors have to answer to a higher authority - insurance companies!! Both health insurance and malpractice insurance rule their lives. That isn't to say they aren't making the right decision but this is a factor.

    When I pushed my second opinion she agreed to get new films since my last MRI was in August. Next week I should hear from her and from my first opinion(I sent him results as well). I would be estatic to know my disc was shrinking. Of course some pain relief would be good too.

    Good Luck and don't ever give up.
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  • Sounds like your current Ortho is conservative and there's nothing wrong with that. However, it seems you had differing opinions initially and now your current doctor has changed the tune.

    I would be grateful if my herniation shrunk.
    It can happen. I know someone who was told by 2 doctors to get a cervical fusion and she felt she was too young. She opted for alternative treatment and has been 7 years fine without having surgery. Talk about drastic surgical recommendation for someone who went with non-surgical treatment option and is ok.

    I would get another opinion for certain and my own personal opinion is it is good to have a mix of opinions from neuro to ortho. And, ask around. I have found amazing surgeons but ones that are more aggressive than I am. If I need surgery, I want a great surgeon . . .but I want to be sure I need surgery first.

    I think they can do more tests. Also, what recommendations did he have? What deficits are you having? When does he want to check back?

    Good luck.
    I guess I have to say congrats too b/c heck, I wish someone would tell me I'm no longer a surgical candidate.
  • That's basically it, he felt that the one herniation he was going to work on was a little smaller and I think you're right gwennie, he couldn't justify working on the other two herniated discs because then that would be a triple fusion. The thing is, the bottom herniation might be a little smaller but the pain is the same. Also, I have the brand-new herniation in L3. If I just had one herniation getting smaller without them finding a new one higher up I would be happy. What he actually said was that I had a bunch of different problems but not one big one that stood out above the others, and what makes someone a good surgical candidate is if they have the one big problem. I would kind of rather have the one big problem, because then someone might actually go in and fix it rather than just leave me in the state I'm in. I guess if you just have one huge herniation someone will fix you but if you have three medium herniations and a whole lot of degenerative issues they just leave you there. He didn't really give me any suggestions other than seeing this pain management guy. He also didn't indicate that he wanted to continue being my doctor, since he only does surgery, so now I don't have a doctor again. This could be a big problem as I'm applying for disability. Once again I'm at a loss. I suspect I'm actually going to need a triple fusion, at this point I would be happy to find someone who would do one, even after reading all the posts about fusion on this site. Anyway, I don't think that just because the herniation got smaller it means it's necessarily going to go away. Regarding the post about the myelogram, I would do it except that this ortho guy isn't going to work with me any more as I'm not a surgical candidate. I think that's kind of strange-usually they would continue to monitor you, but the secretary says he does surgery only so if I wanted to come back I would have to get a referral from someone else like a pain management doctor. Probably it's time to look for someone else, but I've exhausted almost all the resources. What annoys me the most is that I really liked the hospital this ortho guy worked with but I can't consult with other doctors from his hospital because then they'll go back and consult with him-he's fairly high on the totem pole.
  • SpineAZSpineAZ WiscPosts: 1,084
    Maybe it's a blessing in disguise that these surgeons showed their true colors at this point. Even if a herniation shrinks it doesn't mean the nerve is no longer impinged.

    I had a great surgeon for my neck and was confident he'd work with me on my lubmar issues. Wrong. He basically dismissed me. I really think he didn't see I have a ton of spinal problems. He said "go get an injection". Well I went ahead and found a new surgeon. One who really really listens and is very good at evaluating the situation. So far he's been a good choice, but I'm always ready to switch if at any time he no longer makes me comfortable and/or I disagree with his approach.
    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • not more than one ortho and one neuro in your area? Can you go to another practice and see what they think? I went to three neuro-spine places in town here and ended up with an ortho two hours away from me for my surgery. I can't say that I recommend the three-level fusion, but if you have annular tears, you can't do much more than fuse that level (at least that is my understanding). Find another doctor who can help you. You don't want to deal with someone whose ego is so horribly crushed by your not calling back after two appointments.

    Linda

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • I would get another opinion or two, even if you have to travel a little further or wait longer for a surgeon who is prepared to help you.

    This is my experience :

    The first neurosurgeon I was referred to did the wrong procedure for what was wrong with me and I ended up in worse pain. A year or so later I saw another neuro who rejected me because of osteoporosis, but he didn't wait for the final bone density scan which showed I didn't have it in the spine. The third neuro that I saw was very kind and understanding of my pain but he did make me think seriously about possible side effects which could happen with fusion and to make another appointment in a month's time and bring my family with me. I did that and I had an L4/5 anterior fusion in October, and now I can walk without all that pain and hope I fuse over the next few months. So far I don't have any of those surgical side-effects that he mentioned, but from a legal point of view, I think the surgeon has to make it clear to the patient prior to surgery.

    I hope you can get the help you need.

    Trish













    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
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