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so confused, upset,dejected, hopeless

JuvaPJJuvaP Posts: 52
edited 06/11/2012 - 8:47 AM in Back Surgery and Neck Surgery
Hi All,
I just got back from consult with the surgeon. He asid that the MRI tht I had in May didn't show anything touching my sciatic nerve, so there's nothing he can do. He said that many people have back pain with no logical cause.
He suggested that I get a test for oteoporosis, which confuses me because I've never had a fracture, so I don't understand why osteoporosis would be causing the sciatica.
I'm very frightened that my PCP will stop treating the pain without a diagnosis. I'm in excriciating pain even with the meds, can't imagine what it would be like without them.
I'll stop whining now.
Hope everybody is feeling better.


  • Isn't a nerve root sheath cyst an issue that needs corrected???

    I guess I'm not understanding your PCP's problem diagnosing you...
  • Oh that stinks. But I know that awful feeling when they say "there is nothing they can see" or "it's not bad enough".

    Didn't your PCP refer you based on that MRI? I would talk to him about this visit with the surgeon. Remember that this is just one surgeon's opinion. ANd as Aviatrix said in the other thread a positional MRI may show something that is not clear on this test.

    Don't give up. And know that you aren't alone.
  • Juva,

    What diagnostic tests have you had done other than the MRI?

    Juva try to be patient- It took me almost 2 years to get my low back dealt with. When I finally saw my current NS he said the same thing as the one you saw, but went on to add the flexion/extension x-rays that showed the retrololistsis (almost fully dislocated) It also was not mentioned in the radiology report. This didn't show up on MRI only DDD and loss of disc height, central herniations indenting on thecal sac but not compressing..... Every time I stepped, bent etc my spine moved and caused severe pain.

    I think you need to ask your co-workers, friends, etc for NS and OS who they highly recommend and see if you can get a 2nd opinion maybe even a 3rd.

    Maybe a neurologist would be a good idea as well. Then there is the pain managemeners- you could start working with one of them as well.

    Hang in there,

  • Thank you for the responses.
    As far as the root sheath cyst, he said that should not be systematic.
    I haven't had any other diagnostic tests & when I mentioned that the pain has almost doubled since the MRI, he shrugged it off.
    I think I'm going to try to see a neurologist this time. The neurosurgeon told me "I'm a surgeon, there's nothing there to operate on." So, I figure a neurologist specializes in thee treatment of nerves without surgery.
    This is horrible. The pain is bad & the pain is real, just can't seem to find a cause.
    Im awaiting an appoinment with a PM.
    I'm hangin in there, it just seems to take so danged long to get any results.
    Thanks bunches, Juva
  • The way i understand it MRI's will not show everything.
    What are the chance's of you getting the doctor to ask ins. for a type of CTSCAN.

    I know it worked for me before. the mri did'nt show the problem, and my doctor did'nt give up and asked ins. for doing a catscan, with the dye in my spine.
    And that showed the problem, then the doctor was able to correct it.

    There are a lot of nurses on here who would know what i'm talking about, and be able to explain it a lot better.
    But also a soft tissue injury, will not show on any tests. Hopefully a nurse will correct me if i'm wrong.
    Good Luck to ya.
  • Thank You,
    I was trying to remember the name of that as well & the test for nerves.
    Does anybody know what I'm talkin about? I might be able to get my PCP to order them.
    Thanks alot, Juva
  • I am not sure but is possible the nerve study you are talking about is a emg study? There is a bad thing about those test in that they give false negatives meaning it is not always active hitting it. The other test you maybe thinking of with the dye is it possibly a myelogram with CT.

    Sounds to me like the surgeon just said he didn't find anything to operate on but that doesn't mean he doesn't believe you have pain. Sometimes it just means there is no surgical fix for it, is all. But I agree I would get several more opinions on it as well. Good luck and keep us posted.
  • Hang in there. I just had surgery and it was because my surgeon picked up on something which others did not from the MRI. I had a cyst banging agains both sides of my L5 nerve. He told once they opened me up they could really see why I was having prolonged pain. Have as many surgeons look at your MRI as possible.
  • Juva if I was you I would go to a neurologist before the PM doc. You have already decided to pursue this on the neurology side of the house so start at the beginning. I only went to a PM after my neurologist had done all his tests. And depending on the doctor he might also handle your pain control for a while. Mine did for almost a year.

    I agree with Tamtam about the surgeon saying he couldn't help but that doesnt mean there is nothing there. I'm still curious about why your PCP sent you directly to a surgeon. There must have been a reason. I would ask.
  • Hi Kris,
    My PCP sent me to a surgeon after the steriods & anti0inflamatories & injections didn't work & I suppose because this has been going on so long.
    Tamtam, Yes, he said that he believes that I have pain, just doesn't think I need surgery.
    SLB, his comment was that he doesn't do surgery to find out whats causing the pain, he does surgery to fix what he knows is causing the pain.
    So, round & round I go again. Takes so danged long to get an appoinment with anybody & when I do, they are 2 to 4 hours away.
    I may see about getting a neurologist if my PCP will work with me to keep the pain down to a 5.

  • May not be the spine. I am not sure on your exact pain details, but the piriformis muscle can cause sciatica. The sciatic nerve runs thru it and if is inflamed can cause sciatica. There are exercises on line to do and see if they help. At least a try. Most doctors don't acknowledge it.
  • Thanks Rugman,
    I really hadn't thought of that, it's sure worth a try. I'll try just about anything at this point.
  • sunny1966ssunny1966 VIRGINIAPosts: 1,385
    Your post is a duplicate of a few I've posted myself. I know exactly how you're feeling. I've been going through a similar situation for almost two years. I know how easy it is to get frustrated and just want to give up. I've done just that for my lower back pains for the time being. I'm working on getting my cervical straightened out and then will be right back with you trying to figure out the lbp. If you need to talk, vent, whatever please feel free to pm me. These drs make us feel like it's all in our heads and add to the pain by doing so I think.
    Take care and good luck.
  • I commented on your other post, but someone once said something on here that I thought made great sense:

    "We don't have neuro problems causing ortho problems .... we have ortho problems causing neuro problems."

    Maybe an ortho spine surgeon, fellowship-trained, would be a good thing to check out.

    Good luck.
  • Thank You Debbie & Cath,
    Debbie, I may take you up on that.
    I'm beginning to wonder if I suffer from Adhesive Arachnoiditis. I have many of the symptoms. I don't want it to be that, because there's no cure. But, I need to know what's going on.
    Going to my PCP tomorrow to see if he'll send me to a neurologist.
    I just need some relief!
  • dilaurodilauro ConnecticutPosts: 9,842
    of the diagnostic tests and clinical examinations dont come up with something concrete.

    Juvap, to me that is sometimes the most difficult thing to take. Not knowing what is the exact problem is very difficult to handle. I've always had the belief that IF you KNEW what was going on, it would be easier to deal with.

    Now, some folks my say PCP, Pain Management Doctor, Neurosurgeon, Neurologist, etc. I don't know which is the best doctor to see. You have to be comfortable with who you are seeing and have confidence in them.

    If not, then you might need to see someone else.

    There are many diagnostic tests that can be conducted to pinpoint a problem. I am far from any medical expert, but I can not believe that Pain comes from nothing.

    Finding the problem, thats what you need to continue to search for.
    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
  • with the comments of Ron & tamtam. As frustrating it is to not have a concrete diagnosis; its sure better than a surgeon going in there with a "guess" of what might be causing your pain. I went over a year before my first accurate diagnoses - and still don't have the best feeling that docs really know what's going on after the first fusion. Lots of educated guesses, for sure, but I completely understand the frustration of not knowing exactly why you hurt so much.
  • MetalneckMetalneck Island of Misfit toysPosts: 1,364
    sometimes .... Cath ... I'll proudly claim that quote as mine. I'm sticking with my ortho ... who fixed the mess left by a neuro.

    Spending another day ... chasing the pain away,

    Spine-health Moderator
    Welcome to Spine-Health  Please read the linked guidelines!!

  • Ah, it was you. I keep a SH log to which I added this quote, but didn't note from who. I'll put you down as the author and will reference you in the future. Thanks for letting me know. It makes perfect sense to me.

  • I can certainly understand how frustrated you are, and I agree with all the good advice given to you. You want an answer to all your suffering- not knowing anything just adds to it. I feel that I was one of the "lucky" ones because I spent 3 months in so much pain and waited for my family doctor to send me for an MRI. I got sick of waiting so I got in with a spine clinic and finally had the MRI done the NEXT day. It showed disc herniations at L4-5 and L5-S1 and severe DDD. No wonder my back hurt. What worried me most while I waited was nobody would believe me and tell me it was all in my head. No matter what happens, don't give up looking for answers. Your pain is real and you must keep in mind that it can be difficult to pinpoint the exact cause and it may also take some time. Til then, hang in there..
  • Again... "nerve root sheath cyst" will put pressure on the nerves within the nerve sheath. Not sure why that is not being addressed.


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