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Hi Everyone

KiddertonKKidderton Posts: 10
edited 08/11/2015 - 7:13 AM in New Member Introductions
Hi All!
I just wanted to introduce myself and tell you a little about me. I'm a 35 year old male who has had ACDF's all the way from C3 to C7. My first surgery was when I was 24. I was diagnosed with Degenerative Disc Disease after I had bouts of partial paralysis in my left hand/arm and sometimes foot. I had emergency surgery to relieve the pressure on my spinal cord in the C4-C5 region. Everything went smoothly until a few years ago when I began to notice signs/symptoms of spinal cord compression, but ignored it and convinced myself that it was due to overworking myself, etc. I finally saw a neurosurgeon after putting it off for about a year. He told me what needed to be done, but allowed me to delay for an additional 2 years. This past December (4 days after my birthday, to be exact) my neurosurgeon removed the plate that was installed in the C4-C5 region and fused C3 to the previous fusion. He then fused C5-C7 and anchored it to the previous fusion as well.
Since then, I've been in the most unbearable pain and sometimes it hurts so badly I can't describe how it actually does feels and don't want to live. Most of the time it's like someone poured molten metal across my shoulders and down my right arm in a thin line to my thumb. I have absolutely no skin sensation from my mid back to just below the nape of my neck. When people touch me, I can feel it sometimes if they apply enough pressure so that I can feel it in the muscles, but light touches are non existent at this point. Occasionally it feels like a ghost runs their fingers across my back, but I know there's no one there and it's the most creepy feeling in the world.
I had to quit working, as I can't do anything anymore without hurting myself, or putting myself in misery. It actually hurts to sit and type out my life story :-) I've applied for SSDI in the hopes that I get it, because if I don't, I'm pretty much screwed.
My current neurosurgeon doesn't have any answers, of course, and keeps telling me these problems can't be from the surgery he performed, that it's going to get better, but it only gets worse by the week. I've begun to lose feeling in the right arm and hand again, I have terrible hip pain and have been falling down 3-6 times per day...it's like the front of my foot doesn't lift up like it normally should.
I'm currently going to a world renowned clinic in the hopes they can help repair what nerves he's damaged, and I'm hopeful for that. I had to cancel my EMG and my CT scan last week, as I didn't have insurance since I lost my job. Now that I have temporary medical coverage, I'm going to reschedule ASAP to try to get some answers.
I've been referred to PM finally, after 8 months of medications that don't do anything but cause problems, and provide no relief. That appointment is coming in the next week and a half, and I'm excited to see if she/he can provide some help.
I know a lot of you are going through what I'm experiencing, so I'm sorry if I sound like a newbie :-p
If anyone could offer some advice, hope, ways to get comfortable, medicines to possibly speak to my PCP about, I'd really appreciate it. I'll list my current medications below...and I hope I'm not breaking a rule, if so I plead ignorance and apologize in advance.
Vimovo 500 mg 2x's per day--does nothing
Morphine ER 45 mg--does nothing for about 4 hours, then makes me slightly drowsy-still have bone pain
Zanaflex 8mg 3xs day-keeps some of the spasms away, but not many
Klonopin 1mg 3xs day-keeps me from killing people/pulling my hair out in frustration
Neuronton-900 mg 3xs per day-still have significant nerve pain, but it's better than nothing at all
I take 4 different antidepressants per day-I'm sure you've been there as well
I take 2 different sleep meds-but I can't sleep at night. Usually makes me a tiny big groggy and that's all.
I appreciate anyone taking the time to read this and anyone who could offer anything to help, I'd appreciate it. As I said earlier, I don't really sleep anymore, so if you need someone to keep you company, let me know! :-)


Welcome to Spine-Health
Please click on link for helpful information! ~moderator savage

ACDF's from C3-C7. Osteoarthritis in T1-T2


  • SavageSavage United StatesPosts: 5,429
    Starting with my pain management doctor was the best thing for me!
    I have never been a candidate for surgery, so I can't speak to that.

    Going without sleep caused me to become wide eyed, wild eyed and just so irritable ....and anxious!
    My PM did a sleep study test. It showed, like..periodic limb movement. I'm surprised he saw anything as I didn't think I slept well during for testing.

    I do not remember the name of med he put me on, but it caused audio and visual hallucinations, as did previous attempt with ambien. The hallucinations were pleasant enough...but of course worrisome, so we discontinued.

    Presently for sleep I take Klonopin and trazadone. Doctor told me I could take up to three of the trazadone at night if I find I'm not able to sleep.
    Very shortly, only one was necessary. Occasionally a night or two a week without sleep, but I can function and feel so much better.

    I wish you the very best with your upcoming tests!
    Also, best of luck with your Disability claim.
    I used a Disability attorney and received within six months. I never went to a hearing or anything..just paperwork as he advised me. No cost to me. Not sure we're you live. I'm in Chicagoland area.
    Please keep us posted with how your doing!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • KiddertonKKidderton Posts: 10
    edited 08/11/2015 - 4:00 PM
    Thanks so much for the response! I have my first PM appointment tomorrow! I think I had been thinking of a different appointment if I had listed one in my original post. I see so many different doctors, specialists, nurse practitioners, etc. that it's hard to keep them all straight, I'm assuming I'm not the only one with the same problem.

    I had a sleep study done YEARS ago, but the only thing I learned is that my sleep isn't very "efficient" and I jump stages, so whatever that may mean. The advice I was given was to go sit out in the sun as soon as it rises and sit for a few minutes, and eventually my internal clock would "reset" itself. That never happened, and I gave up after a couple months. Now I can't sleep at night because of the pain.

    My PCP gave me trazadone for sleep a few months ago, but it was such a low dose that it didn't do anything for me. After telling him so, he just switched me to something different, instead of increasing the dosage. I had HORRIBLE hallucinations on Chantix right out of the hospital. I'm not sure if it was that medication along with the rest of everything else, but if I ever have to quit smoking again, it will be cold turkey for sure! :-)

    So, Pain Management Doctors aren't people we should be afraid of? I've only heard horror stories about them, so I'm hoping I have one of the nicer ones. Tomorrow is my first appointment, and I'm in hopes s/he will give me something for the muscle spasms. I was taking Zanaflex (didn't work very well, but better than nothing) but medicaid doesn't pay for those, so I was unable to get my prescription filled yesterday. Needless to say, today was a rough day spent mostly on a heating pad and stretching the best I could.

    I filed for the disability on my own, and I hope that wasn't a mistake! It's been about 2.5 months or so. The case worker that was assigned to me said it would take approx 4-6 months to hear something. I hope it goes in my favor!
    ACDF's from C3-C7. Osteoarthritis in T1-T2
  • SavageSavage United StatesPosts: 5,429
    edited 08/12/2015 - 2:23 AM
    My primary doctor realized she was not able to manage my pain , so after two years of working with me she referred me to PM doctor.
    He's my favorite. Maybe because close relationship since I see him monthly.

    I want to clarify about the trazadone. I also see a psychiatrist for my depression. (Not uncommon with chronic pain and we are not alone as sleepless nights, often for days, which often accompany the chronic pain, also.)

    It was my psychiatrist who prescribed the trazadone and to increase when needed. He also prescribed the klonopin.
    Often times, Primary doctors hesitate or really don't know how to medicate the severity of symptoms that accompany some issues.

    I'm thankful for mine realizing that and sending me to specialists who are more familiar with the management of what may seem to be larger doses of medications. As with my experience, the higher dosages do not need to be a forever thing, but to ..well I think, "reboot" my system to settle down to become more manageable.
    Same as when pain out of control, to me feeling as pain takes on a life of its own, and temporary higher dosage given until, the body readjusts.

    All that to say, I tell my PM doctor everything so he has general awareness of all my other issues.
    You might want to mention to your PM about the sleepless nights and treatment and meds you were on.
    He may be more comfortable in increasing trazadone dosage since I don't see you mention experience adverse reaction...but, just little or no effect with med.
    Or he may have different ideas to help get sleep under better control.

    Same as when you mention your years ago previous sleep study, he may want to repeat it. I don't know, but doctor needs all information.

    You don't mention depression, but there are meds that for some people, are effective to reduce pain and treat depression.
    My experience, specialists knowledgable to use medication and combinations of meds, as that is their main focus.

    You may also benefit from the __search__ on this site, upper right on page. Type in your concerns and you may be led to older posts, articles, or videos.
    This might help you with preparation to see PM doctor with questions you may have. I often times go to appointment with a little list.

    Best of luck!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • KiddertonKKidderton Posts: 10
    edited 08/25/2015 - 9:43 PM
    I did go to the PM doctor and he basically said there was so much damage to the nerve roots that he didn't know where to start, as he isn't used to dealing with people in such horrible shape as me. He said he normally deals with people with sore hips and muscles and such. He did give me a few tests and I failed them all. He said I needed to get to the clinic I referred to in my original post to get fixed asap because I had peripheral nerve death, sensory and motor nerve damage and if I didn't do something soon, it would be permanent or looking at YEARS to repair. I have an apt on Sept. 2nd to have a CT scan and with Neurology to have a 3 hour EMG. I'm scared to death, because I heard they were incredibly painful.

    He did prescribe me 5-325 Norco and 5mg of Baclofen, which does absolutely nothing for the pain. I have an appointment in 2 months to see him again and I'm not sure I can wait that long. I'm in constant agony and can hardly do anything at all.
    ACDF's from C3-C7. Osteoarthritis in T1-T2
  • SavageSavage United StatesPosts: 5,429
    So glad doctors are working with you before anything becomes permanent.

    You mentioned the EMG. I, too, have heard from some others that it is painful....varying degrees.
    But I had EMG, it was lengthily, but it was not painful for me at all....none of it.
    So, I don't know if my chronic pain did like ...an over ride...and test wasn't noticeable, or for me was just not painful.

    It reminds us we are so individual in our responses to treatments, pain medication, etc...
    If possible, it might help if you tried not to think of it, or think with not too much fear. Worry might only give you more stress and tension.

    Re having two months to go before seeing doctor about pain medication....my PM/neurologist doctor always tells me to call him, if I need him, between appointments, and I see him monthly. In fact, all my doctors tell me that.
    Maybe a phone call to let him or his nurse know how the pain is doing with the medications. When doctor is aware, then he can tell you what he wants to do about it.

    Since you said there is so much damage, you might want to limit you're activity as that may give you more comfort, also.
    Spine-Health Moderator
    Please read my medical history at: Medical History

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