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Bad experience at the neurologist and now I'm at rock bottom



  • I went through the same thing! After 1.5 years of the most awful pain, and seeing Dr's who just blew me off, and the problem just not showing up on my MRI, I found a Neurosurgeon who listened, and cared. I was labled a nut case, it was all in my head, I need professional help, BLAH, BLAH, BLAH! I am sure you know the speech by heart!! So, I did PT and all the conservative measures, which made things worse, could not sit for over 1 year, and could only lay down, or stand for short periods of time. I was totally disabled. Then, I saw a Neurosurgeon who looked at me, had is partner take a look, and I did a EMG which showed damage at L5 S1. They decided to go in to take a look. It was a 3 hour surgery, and he told my husband it was a mess in there. I had a injury in Dec. 2007. No one would listen when I said all the pain started then. One moment I could run 6 miles, and next, my life was forever changed. I had a piece of bone sitting on the S1 nerve root, and bone on the L5 nerve root, and by the way, I could walk on my tippy toes, and heels. Not well, but I could do it, and my reflexes were good!!! I just kept looking for help. YOU know how you feel, so keep getting opinions until someone HEAR'S YOU!

    I had a Laminectomy at L5 S1, and a Foraminotomy at S1, and a Mesial Facetectomy at L5 S1. It has been 8 months, and my recovery has been slow, but I have 85% of my life back. I can drive, do housework, grocery shop, and GO TO THE MALL AGAIN!!!! Sitting is slow, but coming back. I can laugh again, and work in my garden, and flowers, and do the treadmill. My plans are to be able to run again. Not this year, but hopefully next!!!

    DON'T GIVE UP! Just keep looking, and get another opinion. Go to a Neurosurgeon, and make sure he is Fellowship trained!! Get the BEST! Keep us updated, and will keep you in my thoughts. sweetpotatoe57
  • Jessey, I've not had a good experience with any neurologists, I've seen a few. I would recommend seeing a physiatrist or a pain management doctor. (My PM doc is actually a physiatrist.) You may be better served as they can deal with your symptoms.

    The neurologists thought I was exaggerating my reflex tests, I now close my eyes when they are doing those tests and they're surprised how some places I'm hypersensitive and others depressed.

    I've posted to others to shop around and find docs you like. When you find them keep them. You will end up with a good team. It is frustrating though dealing with the doctors you don't like and time consuming. On top of that, your insurance may make it difficult as well. If that is the case, call your insurance and ask for a case manager. You'll have much better luck.

    I hope you are able to find a good doc that can move forward with helping you out!

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  • I would never go back to a neurologist for my back troubles.

    I had an MRI of my lumbar area, my PCP said it was normal, mild bulging disc. My neurosurgeon took a look at it and listened to my symptoms. He knew immediately what the problem was. A slippage of the vertebrae over the one below, spondylolisthesis. Tried conservative therapy, which rarely helps with this condition, and had to eventually have surgery.

    Do find another doctor!! My personal recommendation is a neurosurgeon at a spinal center.

    Best to you,

  • It really burned my you know what when reading what you went through. I'm so sorry. Nobody deserves to be treated that way.

    I hope you do find a pain specialist or neurosurgeon to figure out what is going? Nothing's worse than being in pain with no answers. I'm sorry you have to be in pain so young and I hope they get you better so that you can go on with your life. Take care
  • Thanks for all the support. I don't know what I would do without this website!

    But some information that some of you have asked:
    -I already saw an orthopedic spine specialist for several months and then he told me there was nothing he could do.

    - I do go to the University of Iowa and they have the best hospital in the state and that is where I've gone to see all my doctors for my back (ortho, neuro, etc)

    - I've had an mri, ct, x-rays, and epidural injection. Everything looked normal and the injection didn't help.

    BUT my mom called my regular doctor and he said he was going to get me into the Mayo Clinic in Minnesota where a team of doctors will work with me and figure out whats going on.

    So after such a bad day yesterday, the Mayo Clinic news made me very happy. Except, that I'll have to miss class to go.
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  • Glad to hear - I search documents - on these issues and this site and Mayo were ones that kept giving me the best info.

    The forum here rocks!

  • :D Aren't moms miracle workers! :D

    Don't worry about missing school -- hope those Mayo Clinic guys/gals kick some "pain" butt! I have a good feeling about this Jessy and I KNOW that you'll get some needed help.

    Hang in there honey -- everyone wants you better real soon!

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  • Good to hear that you're going to be checked at the Mayo! Please keep us posted. Sending positive vibes your way that they will find an answer....

    Best wishes to you,

  • I really hope they can help you at the Mayo clinic. Honestly the first step is to just find someone who is willing to listen to the whole story and find the clues there which can lead to a proper diagnosis. In the end though the key is to just keep trying till you find the right doctor. You are too you ng to go through this type of stuff.

    I went to a neurologist and honestly he was a nice guy but the lamest of the bunch. Basically he said just muscular...please. I have been through now every type of doctor you can the end I just want the proper diagnosis and so should you.

    I really feel talking to these doctors that they really do not understand pain. Everyone gets their day and so will they.

    BTW, if you take the emg, they will finally understand that you are in pain. That is what happen to me. I explained I was in acute pain but until they had to shoot electric through my body and some silly meter showed them it they could not believe. After that test they were all treating me differently!
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