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What else can I try? Plus, I've met my deductible and I can try some more options while it is covere

QuiltinouslyQQuiltinously Posts: 152
edited 06/11/2012 - 8:38 AM in Neck Pain: Cervical
If you'd like to comment on my situation, please do.

Between now and the end of December, since I've met my insurance deductible, I feel that it's a good time to try whatever test or treatment makes sense. My general doctor is very open-minded and willing to try new things, so before I meet with him this week, do you have ideas for me to consider. I'll be sure to follow up and let you all know what worked.

Background: Since I had an ACDF C5-6 over two years ago and it fused, but I am still in pain, now what I do? Since that surgery, I have right hand pain that is still strong, the muscles in my upper back/shoulder area are always angry, my neck of course hurts and goes into spasms easily which then usually set off a migraine headache. Additionally, it hurts to stand for more than ten minutes and no doctor has given me a good reason as to why it hurts including saying that the small herniated disc in my low back can't be the cause (maybe it is or isn't, but I still am trying to figure way to treat it.)

So far this last year alone, I have been to physical therapy 24 times, acupuncture 3 times, massage (strain/counter-strain) 4 times, chiropractor 12 times for my back not my neck, decompression treatment for my back 24 times, naturopath 2 times, neck surgeon once, new pain clinic once, GP 10 times, and this is off the top of my head. Pain meds include Oxycotin (long acting) 20mg 4x/day, Oxycodone (break thru) 5mg 4x/day, Neurontin 300mg 2x/day and I just got off Flexiril (yeah!). I'm also taking perscription strength vitamin D of 50,000 IU 1x/week and a few supplements.

NOTHING HAS HELPED! The meds mask the pain if I lay low and do little. I am at my wits end! The pain clinic guy wants to talk about nerve ablation and shots again, but I don't. He also suggested that I have another EMG to see if the carpal tunnel surgery's scar tissue is what is causing my hand pain or if my neck is the cause, and I think that has merit.

Besides that, there are things that I've learned about here on Spine-Health and I'm considering but am not sure if they makes sense are: a positional MRI to see why my cervical spine hurts so much. Maybe I should try deep tissue massage on my upper back as long as it doesn't set off a migraine. Perhaps a nutritionist could look at my diet to suggest foods that will help me feel better. I hear that a discogram can pin point where pain is coming from, but is it worth it? Maybe it's time for my seventh MRI. I don't know. How does one get labeled with Failed Back Surgery Syndrome or is there any point?

Also, I am a 49 year old female who is mostly fit but on the skinny side and who doesn't "look" like she is in pain. I even have had two doctors (physiatrist & neurologist) tell me that they suspect my pain as not being as bad as I say. In other words, I guess they think I am lying for more meds even though I didn't ask them for any as my gp does this. :-( Those who know me or who look into my face, can see me grimace from the constant pain. I guess a woman who has denegerative disc disease and failed surgeries can't be in enough pain to warrant more help. Yet I feel like I'm closer to 80 than 50. Shoot, my 74 year old mom is in better shape and has more energy than I do and she works full time managing a large company, but I need to stay home and lay low, and hire help to get my own house work done. It stinks.

Any ideas or comments? I'm done grasping at straws, but not sure what comes after that. This all started over 30 years ago when I was in a bad rear-end car accident as a teenager, and it's slowly degenerated to this.

Thanks for reading and the thoughts,



  • Well my suggestions is that you get a myelogram to look at the structures more clearly. I have had 5 neck surgeries and the pain keeps coming back. Unfortunately, I had a MRI taken in April that yielded some issues however, not to the degree of the myelo with CT. I do know surgeons order those test in certain segmentation slicing depending on what they are looking for. The myelogram gave definitive answers as to what is wrong. The emg study is also a good place to start. It really helps if you had a emg study pre-surgery and can have those copies for the examiner to look at. Also if it is possible to use the same machine and tester as well. One thing that is really important is you may want to have a outside radiologist review the films as well. That way there is no doubt to the issues. If you elect to go with a MRI i would make sure it is completed with contrast at the very least.

    As far as the discogram most surgeons don't use those to often in the cervical spine. Seems the validity is not the same as with the lumbar. Another option to the disco is using selective nerve root blocks, if they can isolate out a problem area. Typically the nerve root blocks will numb the pain area out. Keep in mind the pain relief is short lived and it used as a diagnostic test. Let me also say I am no doctor just someone who has undergone lots of procedures and testing. You will need to get a doctor on board though to run the test. Good luck and keep us posted.
  • Get an EMG or myleogram as suggested above.

    I saw no mention of you having tried Lidocaine injections or considered a myofascial pain dysfunction syndrome due to your past surgeries and pain trauma.

    My rheumotologiest ruled out Lupus, (I did have other similar signs) but he did suggest that from 4 surgeries in less then 4 yrs, I may have developed a pain syndrome dysfunction. Part of the point of the LIdocaine treatments is to reprogram the brain to stop the muscles and nerves from over firing which may be what your's are doing.

    I know your pain is real and at times, to hear it's a "pain syndrome" can be offensive, but it is real pain. It's just that your brain may be overreacting to stimuli at this point. It's very much like phantom limb syndrome.

    Might be worth a try? Good luck, Red
  • Dee,
    We should all applaud your tenacity and inventiveness and keep hold tight to the good doctor who is supporting you, I like the fact that you are pacing well and living within your capacity that you see helps, in not allowing the pain to increase more that it should, trying to squeeze your life into your physical capacity that is left, is never easy achievable or without emotion.

    We have already reviewed our wants and at the cost of good pacing we are mandated to look at our things we have to do our needs and start giving only those with the most priority some of the limited effort we have left. It is always difficult when the expectation of a process have not given us the desired improvement we expected and we are not encouraged in trying them again, I had three epidurals with differing success.

    In knowing what to do next the best option is to have a current evaluation and if the option of another EMG may confirm what is happening and provide some evidence of what to do next. Pain for us all may follow similar blue prints that could be superimposed on all of our history and experience, not many would deviate from that plan. That 50/80 ratio made me smile as we al feel like that at times and we need some humour as life goes on.

    You biggest asset is that openness to try which you must never steer away from it will help you in the longer term and you have it. I am a 20 year patient and it is not easy living this life, I did not ask for it, as our families live its ramifications also. Trying not to think about a condition that is with us continuously is almost impossible and many her are still looking for that illusive solution, with a smile, listening ear and hand of friendship.

    I wish I could be more helpful.

    Take care John =D>

  • Hi Tam,

    I appreciate your comments. I gave my general doctor a list of ideas today and including the myelogram. I would not have thought of it. I am pretty sure that I'll have another EMG, but it will be with a new doctor as the last one told me that he thought I was lying about my pain, but then recanted when he learned I'd not fused. Obviously, I do not like him!

    My gp doc is great and suggested that I email him any other new ideas and in the meantime, he's going to study my list and follow up. I hope he does it.
  • Hi Tam,

    I appreciate your comments. I gave my general doctor a list of ideas today and including the myelogram. I would not have thought of it. I am pretty sure that I'll have another EMG, but it will be with a new doctor as the last one told me that he thought I was lying about my pain, but then recanted when he learned I'd not fused. Obviously, I do not like him!

    My gp doc is great and suggested that I email him any other new ideas and in the meantime, he's going to study my list and follow up. I hope he does it.
  • Hi Reddawn,

    Thanks for your input. I had never heard of myofascial pain dysfunction syndrome. Like phantom pain... interesting. I'll have to think on that as I suppose it could be.

    I tried the lidocaine injection one time and it only helped for part of one day. It also made me whoosy, but only for about an hour. It may be just the thing for you. I'm glad you're getting a new EMG. Let us know what it shows. I would be interested in what the doctor says about your "sensitive nerves".

    I took the time to read your history and I really feel for you! It's like you are about ten years ahead of me but ten years younger. I'm happy for you to have some hope with a new doc.

    Glad you've found Spine Health. It is a great health site and has kept me from getting depressed because finally there are other people who get it and really understand.
  • Hi John,

    Thank you for elloquent and encouraging email. It's good to pat each other on the back. Glad I made you smile. It can be hard to make anyone laugh or smile when pain is ever present.

    I'm hopeful that my doctor will guide me along. He's great and I so appreciate his willingness to try new things. I wish that everyone here on SH had such good docs.

    Take care,
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