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Doctors don't know why I'm in pain

I ruptured L4/L5 in 2007 and a year later had it fused. Recovery was lengthy, as to be expected. After I healed, I was essentially pain free for 3 years. Then, out of the blue I had sudden back pain again which led me to the ER and then back to my NS. After a CT myelogram, he stated that my fusion looked "awesome" (his words), so that was not the problem. He said his best guess was it was facet pain above and below the fusion. There was a buldging disc at L2/L3 but he insisted that is not part of the problem.

He referred me to pain doc for diagnostic injections. Did those and results were not overwhelmingly conclusive. Did RF and that was a nightmare. Hurt worse. Pain meds, PT, accupuncture, and a whole lot of time (a year?) and I wound up pain free again. That lasted for almost a year and then I make a horrible mistake and bent over incorrectly to pick up some laundry 6 weeks ago and I am in total agony all over. Had a MRI done this week and pain doc said nothing has changed from my last scan. Says he has no idea why I'm in so much pain. Told me to go back to NS and see what he has to say. I have a sick feeling that the NS is going to say the same thing.

Has anyone else had a doctor (or doctors) basically throw their hands up and say they have no idea why you're in so much pain? How do you keep news like that from making you feel hopeless? And where do I go from here?

Thank you for any advice you can offer.


  • LizLiz Posts: 7,832

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • 1028761102876 Posts: 248
    edited 03/27/2014 - 9:28 PM
    I currently am in that position. My neurosurgeon is slightly different from yours and is workin on trying things to see what the problem is though. We have ruled out muscle pain but other than that we don't know. I am only 15 and have had an occiput.-C2 fusion. They were broken into 2 surgeries the first one being in January 2013. I have had pain ever since then. Since my second surgery in October it is worse. For me what has gotten me through I having one doctor, for me it is my neurosurgeon and a pain clinic doctor but at first was only neurosurgeon. For you is may be your primary care but at least someone who is willing to do whatever it takes to figure it out. I have had worsening symptoms and my neurosurgeon has said that I shoul have something showing up on the MRIs and CT scans but there is nothing. It is frustrating for her and I. That is what gets me through. I also see a psychologist who helps me to cope with the pain, and let's me talk about it. This had made a huge difference in my life. There are times where you do want to give up but then i feel like I have come so far. Feel free to PM me! I would love to talk to you more and answer r help you in any way that I can! Good luck!
  • dilaurodilauro ConnecticutPosts: 9,856
    before a formal diagnosis can be confirmed. Most doctors, specialists can come up with some ideas about what is going on with a patient, but diagnostic tests would be done to formalize those ideas.
    Many diagnostic tests have two sides . For example, the ESI. I had recent Lower Back and Hip issues. My doctor team (physiatrist, spinal specialist and hip/knee surgeon) decided on using steroid injections as a tool. First I had an ESI in L2/L3 which did not help with any of my pain. Then I had steroid injections into my hip, which did help. End result , another total hip replacement.

    The point is that it can be difficult for doctors to pinpoint the problem. Pain medications and other medications can also be used to diagnose the problem. Then there are the other injections, Facet, TriggerPoint, etc. All can help with the pain, but also can be used to further identify the problem.

    So, its not so much as the doctors dont know why you are in pain, but the doctors are not positive as to what your root problem is. It may take time to accomplish this.

    But, there is also another path. There are doctors who have done everything I mentioned above and more, and can not see any reason why the patient should be in any pain. Yet the patient is complaining about pain. You can run into a stalemate situation here. Your options are to seek another doctor to get a second opinion. They may find the problem, but they might also say , There is no problem
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • jwiggersjjwiggers Posts: 4
    edited 03/28/2014 - 4:51 AM
    Good morning,

    I believe I can say I know what you mean when you feel like the doctors just throw up their hands and look at you like you are faking it or something. I had surgery on L5 S1 disc herniation in May of 1999. I had severe leg pain before that and after the surgery the leg pain seemed to dissipate somewhat but not completely. I lived like that for about five years. Then I went to a pain clinic and the doctor implanted a spinal cored stimulator which helped with the pain a lot. There was a period of a few years where I didn't even halve to use the spinal cored stimulator very much. Then a little over 1 year ago, a couple of wrongs moves and I have such severe back and leg pain that I can hardly sit for very long, sleep in bed all night, or walk for long distances. I went back to my orthopedic surgeon and he recommended a spinal fusion of the L5 S1. They did some injections first but little or no help. Then they did a disco gram and that hurt so bad. The disco gram found that I had annular tares at L3-4 and L4-5. My orthopedic surgeon recommended a three level fusion of the L5-S1, L3-4, & L4-5. I was getting ready to take his advice and then I had an insurance issue and he couldn't perform the operation because of insurance issues. I had started going to a different primary care doctor which is handling my pain medication just a few months before the disco gram. That doctor was in the Mayo Health System which I though offered the best world class medical care anywhere in the U.S. However, that has been an extreme disappointment. After the insurance issue arose, I asked my primary care doctor to refer me to a neurosurgeon in the Mayo Health System. Thus, started a tremendously disappointing two months with another disappointing doctor visit to a pain clinic yesterday. All the Mayo Health System doctors are extremely anti surgery and anti pain medication. I have been referred to two different doctors and just yesterday to a pain clinic. I am told each time that my pain doesn't warrant surgery and I should try to wean myself off of pain medication. It makes me feel so hopeless that I don't know where to go anymore. I feel completely helpless. I made things worse for myself by taking some extra doses of pain medication over the last several weeks when the pain was so severe and now I only have 4 pills left to last me four days till I visit the primary care doctor again and he hopefully will refill my prescription. I'm suppose to be taking 4 pills per day. I'm trying to peruse disc replacement surgery in Germany but that is just a far a way in the distance hope. I feel like the doctors have just written me off like a big baby. What do I do? The pain is so severe I can't sit for very long and I can't lay in bed for more then three to four hours. I'm hopeless and in a panic also. I understand. What can we do? Pray and pray for strength. Is there any hope that the pain will ever end?
  • georgiagirlggeorgiagirl Posts: 12
    edited 03/28/2014 - 8:47 AM
    Thank you all for the responses! I have been thinking some more about it and I guess it's entirely possible that maybe there is not one very clear cause of the pain, but several, harder to diagnosis, problems. It could be facet pain, maybe a small tear in a disc, instability and the bulging L2/L3 all contributing to my pain. Then what? I can't have my entire back fused! I'm sorry if I'm getting caught up in the "what ifs", I'm just trying to think of questions I can ask my NS.

    Jwiggers (or others) - I don't know much about a spinal cord stimulator. It sounds kind of scary. Do they have to know a specific level to insert it (i.e. where your pain is originating), or would it help pain anywhere in the lumbar area?

    Ron - It sounds like I may be headed down the road to a second opinion if my NS says the same thing as my pain doc. I guess it's then just trying to decide where to go - a surgeon, a non-operative spine doc, PT, or a pain doc. It can be a little overwhelming trying to decide where to start again. I have received advice from a family member that I should completely "step out of the box" and maybe even go out of state to one of the nationally, highly regarded clinics. Have you ever done that?

  • dilaurodilauro ConnecticutPosts: 9,856
    edited 03/28/2014 - 9:09 AM
    Stepping outside the box.. Well, that can bring on two things.

    When my father first had his lumbar surgery, he insisted that he go down to a major hospital in New York City. We tried to tell him that the surgery is not that complex and there there are many excellent doctors nearby that could do the same for him and probably better because they were smaller hospitals. Well, he went to NYC anyway. No problem with the surgery, but he spent hours out in the hallway waiting for a room, when he got a room, he said it seemed like hours before a nurse or anyone would come in after he pressed for help.

    Now thats not to say there is anything wrong with the hospitals in NYC or other big cities. When I had to have both of my shoulders replaced along with new ball and stem implant, I went to a hospital in NYC. Why? First, complete shoulder replacement is not an easy surgery. The surgeons where I live have done maybe 2 of them per year. The surgeon I selected in NYC did them 6 or 7 times per month!

    So, it is important to do your homework and find the 'correct' surgeon. That doesnt always mean the best. Ron, you cant be for real! But I am, the correct doctor is one that you have confidence in, you can feel the trust, has good communication skills with you and listens to what you have to say. Some of the 'best' surgeons in the country are almost like robots, they perform surgery after surgery, and in many ways, you are treated as how to robots would treat each other.

    The other side of stepping outside the box means to me to look beyond our conventional western medicine. The eastern medical approach has been doing it for thousands of years and without the use of chemical compounds. The aroma therapy, music relaxation, meditation, acupuncture, cranial massage,etc are very helpful in reducing pain levels. I have tried those eastern medical procedures I just described. They have worked for me. But I also use much of the standard western medicines. So, its sort of like East meets West
    I was lucky that my physiatrist believes in eastern medicine. She was the one that sent me to my Thailand Deep/Soft Tissue massage guru. He introduced me to much of the eastern medical approaches. For me, it works. I always tell others, it cant hurt, since its natural.

    Bottom line, you need to be comfortable in which ever approach you take. The more research you do , the better educated you will be on the subject matter.

    Some of the hardest situations to diagnose are when there are multiple problems causing the pain. Our bodies are not Mono, we are in Stereo mode, which means when one area is impact, there will be some other area that will be impacted also, could be good, could be bad. It becomes like a puzzle. An onion, you peel away layer after layer until you get to the pearl. And in your cause, the pearl would be what is the root cause for your pain.

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Well I know that the TENS unit helps some people (not everyone, it didn't help me) but you place the electroides where you feel the pain the most and can change the frequency of the pulses. A nerve injection may really be helpful in your case. The doctor who does them will determine by your symptoms where to inject the steroid, it helped me before my second surgery, we are currently working on other options before that point since my second surgery. Pain sucks, especially when you know it's there but No one knows where it is rooted from. Good luck and PM me if you want to talk it out!
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