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Would you undergo this experimental surgery to get relief?

blackberrybunnybblackberrybunny Posts: 157
edited 06/11/2012 - 8:46 AM in Lower Back Pain
My Neuro, who is also my pain mgmt. specialist, has approached me before concerning some experimental surgery he wants to do on me. I have 2 discs that are torn, and are leaking and need a multi level fusion. He's got me on serious pain meds now and I am still in a lot of pain and misery, and when I went for my appt. this past Wednesday, his P.A. said she had a note for me, a question for me, in my file....

She asked me if I would be willing to let Dr. X perform some experimental surgery. It is NOT approved by the FDA, and I would have to pay for it all, out of my pocket. I told her there is no way I could pay for this, as I live on a disability income, from my blindness.

When I asked HOW MUCH is the surgery, she could not tell me. Nor could she tell me what the procedure was called. Perhaps it does not have a name yet, since it is experimental. My doctor is Harvard educated, has tons of recongition and lots of great experience and references to back him up. I trust him, but not for this.

The procedure apparently entails going in and cutting the nerve that is telling my brain I am in pain. That is all I could get out of them.

My thought on this is that this experiment would NOT solve the problem, and that is that I need a fusion, undoubtedly. Cutting some nerve only fools my body into thinking there is no pain, right? It will NOT help the fact that my discs are leaking and I am losing disc height, and will be veterbrae on veterbrae eventually; HOW is his experiment going to solve my problem? I do not see how it could.

What do you think about this? Would you undergo this experimental surgery? I figure, if he wants to do this, and he knows I am below poverty level, blind, disabled, then maybe out of the goodness of his own heart, he should be willing to experiment on me at no cost to me! And what if he messed up, cut the wrong nerve and then I have no feeling in my leg or foot and end up dragging it around? I couldn't even sue him or anything. :(

I'm not going to do it. In fact, the more I think about it, the angrier I get. This is the 2nd time they have approached me with this, and it really angers me.


  • What does the doctor say? If I'm understanding you only the PA has spoken to you. I would ask to speak directly to the doctor and ask him all these questions.

    I agree with your concern that it won't fix your problem, only reduce some pain for now. I would ask him what will happen to your spine in the next years.

    Sounds to me like the doctor should be giving you the selling points and the downside.
  • Holey Cow BBB!

    A lot of us have chronic pain. Chronic meaning of course that the physical 'injury' to the tissues and such are healed, but the pain receptors continue to scream pain, vs acute which is where there is still injury and the body is warning of injury. With your tears, you have both chronic and acute pain going on. So your body is still 'warning' you that something is wrong.

    I think for those who have moved to the chronic side of the house, cutting nerves, burning nerves etc., could be a very good thing. I think I would be cautious since the "injury" is still progressing. Like Kris said, I would wait to see what the actual doctor has to say - e.g. the pros and the cons. But to 'experiment' on me, at my dime, NOT. Especially if I were on a fixed income! My monies would be better saved for the deductible for the actual "fix me" surgery? I guess my other question to myself would be, if this experiment is so good, why should *I* pay for it? I think I would be angry too!

    What is your surgeon saying about addressing the tears you have now? Are they saying if you are a surgical candidate? I guess I am asking because if they are saying you're not for some reason, is that why the experiment is being offered - to get you relief until you are a candidate? It sounds like you already have a good grasp on the questions you are going to pose to your doctor. Please keep us posted on what he says. I know you are a hurting digit, and want relief. Just like any procedure, try to get all your pro and con questions answered. *HUG*


    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • There are a ton more questions you need to figure out before even considering this at all. I agree there is noway a PA should be discussing the details if they don't even know them. First off when a nerve is cut it is a done deal, it is gone forever, so I would be asking about that. I would be asking by cutting that nerve what else could you loose? Second I would ask about cutting the nerve the doctor is discussing, won't the leaking fluid eventually just hit another nerve? I would also be asking about the space left in the colume itself along with any stability issues that might appear as the disc disappear. I mean there is a thing as self fusion that the disc goes away and the bones grow together, but the odds on it and that it grows together correctly are rare, so I would also be asking about that. But as I said the most important is once a nerve is cut it is gone, and the risk associated with that. Pain can often find it way around, if you will to a new place.

    So I can't say yes or no, but I think you need lots more information before even considering. Also you need the name of the surgery as if it is a trial program there is still data out their. If it is a trial program ask also whom is the trial sponsors on it?
  • Wow, good points, and I agree!!

    I have talked to the doctor himself. In fact, he posed the same experimental surgery to me about 4 months ago. When I told him I was disabled, on a fixed and very low income, he blew me off, said forget about it then. My mom and I were shocked, and that was then. See, his P.A. and him ride home together, to their homes, about 50 miles away. So I can only assume, guess, that they might have been discussing my case at some point, and she made a note in my file to ask me again about the surgery.

    I am scared about having any nerves cut, like you say, once it's done, it's done! I have faith and trust in his abilities to perform such things, I just don't trust the procedure itself!

  • You need to talk further about this to him.

    First of all, making the patient pay out of pocket for experimental surgery is really not the norm. It's the norm that the sponsor of the treamtent pays for the expenses.

    Second, it's not the norm for them to give you so little information (I've been a research assistant, and so know what the rules are!)

    As far as your reason for not wanting this TYPE of surgery, you can talk to your doctor about whether the pain you have serves any purpose. Much of our back pain is neuropathic pain, it serves no purpose to protect our body or promote a healing process.

    Good luck.
  • This sounds like a clinical trial and as such should be of no cost to you. In fact, they should probably pay you to do the procedure.

    I have had 4 Rhyzotomies, nerve burns, which have helped greatly. They don't 'cut' the nerves but burn them which kills them. The issue still exists but I don't feel it. The concept is the same as what pain meds are supposed to do. Not the same obviously but they both mask the pain without repairing anything.

    Regardless or anything.....never, never, never have any procedure, surgery, etc without having it explained in detail to you.
  • I'm glad others here know the 'trial' vs 'who pays for it'. I too thought that the folks that want to do the trials paid for the procedures, but I didn't want to guess. I hope this missive finds you at least feeling a bit better. Gentle support *HUG* to ya triple B!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • Thanks, everybody for your wisdom and support.

    This is not a clinical trial. In fact, there is not team, just my doctor and his nurses. I get the feeling it is all hush-hush, because when I told him I could no way pay for it, he said 'okay forget about it then' and would not even tell me what the procedure was. It wasn't until last week, when I went in, and his P.A. had a note in my file telling her to ask me about this procedure again. At least SHE told me it is where he'd cut some nerves. And that is about all I know! It's like it's a secret or something--- like they don't want to talk about it too much, and they are just hoping somebody would go for the procedure. Well, I am NOT.

    The more I think about it, the angrier it makes me feel.

    OHH, btw, I meant to come back and ask you guys, what do you think are the legal implications of this? Is it legal what he is doing? Since it's not part of a clinical trial, but something HE wants to do on the side, am I protected, or is HE protected by some law? We are in FL if that makes any difference.... state laws may differ. I have no idea about any of the laws when it comes to this. Does anybody have any ideas about it? Since it's not FDA approved, and he wants ME to pay, how can I protect myself? (Not that I am going to do it, but just saying, what IF I did....)???
  • Then it is illegal and unethical.

    And I'd change doctors if it were me, because- oh my gosh, I can't believe he's doing that.
  • I wish I could change doctors, but I can't. We live very rural, even though we are in FL. He is the only pain management doctor here. I can't ask mom to drive she and I to a doctor farther away-- we just can't do it. See, I'm visually impaired and have never been able to drive, so mom and I have to make our appts. together, at the same doctors. Most mothers and daughters go out and get their nails done. Last week, we got mammograms and pap smears. :( LOL!

    So it's just unfeasable that we switch doctors and have to drive farther-- my mom is in her 60's and her driving already scares me enough. Plus, we have to go to our pain mgmt. dr. every month. What a drag!!!

    So you think this is illegal? And I don't know if he'd want to do the procedure in his office, or at a hospital, or what.
  • If it's not an FDA approved procedure, and he's not got an approved research protocol, then yes, it's illegal. You just can't go around randomly experimenting on people.

    But, if it is approved, or there is a protocol, then it's legal. He might just have not explained it properly. And it might be that you'd have to pay out of pocket because medicare does not pay for experimental procedures (I know some of them are not funded in later phases, and get insurance to pay).

    You could find out from FDA whether he is doing any clinical trials, maybe? Or just ask him for more information?
  • I'm not going to bother to ask him any more about it, because I'm not going to have it done. I'll be seeing a new spine surgeon on the 31st, so I'll wait to talk to him and see what he has to offer. Maybe mention this experiment (but no names) and ask for his spin on it.
  • Howdy BBB,

    FDA is not one of my areas, but given that he is giving you the details (sort of?) and too advising it is experimental, I do not believe it would be deemed illegal, and too if something went wrong, of course *you* would suffer for it, but too I do not believe that absolves him of liability in so far as malpractice is concerned. He also would have "less footing" in court *since* it isn't FDA approved!!

    Sometimes 'experiments' are used to save lives everyday in the ER OR! My 'wing' thing is an experiment! <-- That has failed it seems. :) Now is it ethical, yes and no. I would say no in that he expects YOU to pay for HIS experiment! If I were a doctor, and wanted to see if my thoughts for a fix could work, I would offer it at my expense! But that is just me thinking out of the box BBB!!! I agree with your decision if that helps?

    Does that mean I would go to another doctor over this? No, not necessarily. If my relationship with my doctor is otherwise what I am happy with, and I trust him/her, then I would stay the course. Like anything, we have to take all of the ingredients to decide if we like the taste! :)

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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