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A week from tomorrow, finally seeing the neuro

I am so anxious to see the neuro! I was sitting here the other day thinking about how much my life has changed in the last few years... It is sad really. I think of what my days now consist of and it amounts to a whole lot of nothing. It is like my life has come to a halt!

I shower, put on a new patch. The next morning I try and get as much house work as I can done because days two and three are, more or less, couch/bed/heating pad days. Then I start the process over again. How damn depressing!

I used to do so much that I didn't have enough time in my day to get it all done. I can't handle thinking that this is what my entire life is going to be like.

I really hope I get some kind of answers next Friday. I feel like right now I am just at a stand still and it is driving me insane. I am ready to have some kind of life back!


  • Good luck on your new neuro appointment. I know what you mean about life being on hold. You're still so early in your chronic pain that it's easy to remember what it was like to run around and never think about your back. But the boredom, the pain, living by pain med time, shoving in a bunch of work just to pay for it for days - that's no way to live at all.

    I'm thinking of you and am very anxious to hear if you can get a diagnosis and a plan of action.

  • Thanks Cathie! I just have a million things going through my head and am driving myself insane, lol :-) I'm going through every scenario of how my appointment will go. So ready for next Friday to get here!!!

    When I went to my last PM visit, he suggested another RFA... The last one was horrible! I was in so much pain after I had it done that I ended up in the ER several times because I could not get the pain under control. I told him I want to see the neuro before I try anything else. I have tried tons of meds, exercise, RFA and PT back in 2010/2011, injections, anti-inflammatories, heat/ice, etc. I am done being a Guinea pig until the surgeon tells me my options.

    I will update as soon as I get home from the surgeon. I know I will have some kind of news, he will make sure to explain everything, as he always does :-) Seven days and counting!!!!
  • Well, went to the surgeon, signed in, and lo and behold.... They told me the wrong day on the phone when they rescheduled me. AHHHHHHHHHH!!!! So, my actual appointment is Monday July 9th, not July 6th. I guess I will be back on to uodate on Monday!
  • So sorry to hear that you have to wait yet again! Hang in there!
    2011 ACDF C5-6 for Spondylosis with Myleopathy
    2012 L4-5 herniated disc and hernated disc at C4/5 2013 Taking Amitriptyline for headaches
  • Sorry to hear that after you have been waiting....you have to wait again :( At least it is only a couple of days away now.
    Good luck at your appointment.
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • I really hate when that happens. You wait and are anxious to get some answers only to be told to wait some more, which comes with more anxiety.

    Try to have fun this weekend to keep your mind off of things. I'll be anxious to hear what you find out on Monday.

  • I was upset about waiting, yet again, but at least it is only until Monday. I was so anxious Friday! I had prepared myself and had everything set and ready to go... Oh well, I am ready for Monday!!!
  • biobabe131bbiobabe131 Posts: 47
    edited 07/07/2012 - 7:32 AM
    I sure hope you get some answers soon! It is difficult playing the waiting game. Best of luck! Hugs!
  • Thanks BioBabe! It is pretty sad that I am excited about seeing a surgeon :-) LOL

    I will post as soon as I get home!!!
  • I am new to your thread, but I understand how you feel about wondering where your life has gone. I hope you got some answers from the surgeon today.
    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • Well, I thought today was going to be my day to get answers. HA!! I walked out to my car, after my appointment, and just cried a good bit.

    So, my appointment time was at 12n, go in and sign in, finally get called back around 12:30ish, no biggie they're running a wee bit late. Around 1pm, still waiting, 1:15, still waiting. About 1:30pm the surgeon finally comes in. Apparently the format my MRI is in made it to where he is unable to open it. He read the report, but said it was very "generic" and that he did not want to decide anything until he sees the actual films, which is good that he wants to see the films, but seriously you wait until the moment of my appointment to find this all out.

    Bottom line is that I got nothing out of my appointment. He did the normal stuff, does this hurt, do you feel this, turn your head, asked how my daily life is, and whether or not I am sleeping. He said that just going off of my file (notes from my PM, GP, etc.) he feels that I am under medicated and that he thinks I would be a good candidate for a stimulator, but until he sees my films he doesn't know if surgery will help or worsen things.

    I am super depressed. I thought I would get actual answers today, but really it was a huge waste of time. I can't live like this. How can I be in this much pain and no one can figure out exactly what is wrong. I seriously feel like my life is over. I can't live the rest of my life on pain meds. I know many of you are in much more dire situations, but I can not picture living like this forever. For the love of god, I am only 32!!!

    I will update as soon as I hear from the doctor.
  • I feel so bad for you. I'll pray you get your answers soon so you know where you stand. If this happened to me I think I'd be eating nails, I thought all sugeons had nearly all versions of software to run the programs on your CD. Obviously yours didn''t match up. I hope you hear soon so you know where your life stands.
  • Awww. I am so sorry! I can relate to you as I have something that is undiagnosed and am a young woman as well. Sometimes you think, today's the day I find out more, only to be asking more questions at the end. I sure hope you get some answers soon! Best of luck Mel!
  • jellyhalljjellyhall Posts: 4,373
    edited 07/14/2012 - 12:41 AM
    that your appointment was so disappointing.
    I have experience of having an appointment with the consultant, that you have waited ages to see, and then coming out feeling so upset because it didn't lead anywhere and you still have so many questions. Often you are left with even more questions that you started with.

    I really hope that you will hear from him again soon, when he has managed to view the scans, and that he will have a plan to deal with your pain.

    My neurologist told me that he wasn't going to view my brain scan (they want to rule out MS before doing a 2 level ACDF) because he liked to examine and talk to his patients with an open mind. Fair enough, I thought. I had rather expected that we would view the scan together once he had examined me. No, that didn't happen. My appointment with him was on 24th May, and I still don't have a conclusive answer. I phoned his secretary yesterday to find out if the letter had got lost on the way. She said that he doesn't use a computer so she has to give him paper copies of everything to view as he can't view them on the computer. She apologised because she had forgotten to give him my blood results which is why he hasn't got back to me yet. He is back from holiday on Monday so she will put my file on the top of his very big pile.

    You are not alone with all this waiting and 'let down' appointments. I know that doesn't help you much, but hope that knowing you are not the only one, may help just a little bit. Lots of people here who really understand all this frustration.

  • Thanks for the responses. I was/am super frustrated. I called his assistant and she said he still hasn't been able to look it over. I am going to go for my SCS consult and do the trial and see what happens. I am really just over all of it!!!

    Jellyhall, I have my fingers crossed for you! I hope you hear something soon. Let us know what you find out. Take care
  • Thinking of you during this time. Sorry so short and sweet, just had to support best I can now.

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