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I'm here again

Hi everyone,

Had 3 level (C3-4, C5-6-7) last May 15th. Pain and tingling went away until November, now it's back in full force. Had 2 injections 2 months ago... nothing. Today I went to a neurologist. She said my MRI from 2 months ago looks kinda bad. I think my surgeon is sugar coating it. Going to get an EMG in 2 weeks to see if I would benefit from more surgery (?). Also, she told me to increase my Gabapentin to 600 mg at night.

The burning in my left shoulder and weakness is getting bad. I'm scared, frustrated, and I feel like I'm back at square 1....no, square -10.
- Vin

3 level ACDF, c3/4, c5/6/7 in May 2012
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13

Comments

  • Hello ving, hope you get any wiser from the EMG, can you tell some more about the burning in your shoulder ? can you sleep on it ? is it only the shoulder or the whole shoulder/neck area ?
  • Had the EMG on Friday. When I asked Neurologist "So, this is not good news, is it?", she said, "No"....

    From report..."Mild fibrilation/PSWs in triceps, evidence of active denervation in the left lower cervical paraspinal region. Evidence of left lower cervical radiculopathy exists, likely C67"

    That's just terrific...

    This will never end.
    - Vin

    3 level ACDF, c3/4, c5/6/7 in May 2012
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  • VinGVVinG Posts: 56
    edited 06/27/2013 - 7:59 AM
    After my surgeon got the results from the EMG, he wants me to get a CT Myelogram. Has aynone had this? what's it like?
    - Vin

    3 level ACDF, c3/4, c5/6/7 in May 2012
  • Had my CT myelogram last week, and am looking at the report...UGLY!!!

    long story short...moderate/severe bilateral formaninal stenosis at EVERY level, even the ones that are fused (which I don't understand). C7-T1, T1-2 disc degeneration, canal stenosis impinges the cord at T1-2.

    I haven't spoken to my surgeon yet, but it looks grim.

    It looks like a lot of surgery and/or a lot of misery/pain meds for the rest of my life.
    - Vin

    3 level ACDF, c3/4, c5/6/7 in May 2012

  • I haven't seeen this thread before.
    I am so sorry that you are suffering again and that your EMG and CT myelogram results were not good.
    When is your appointment with your surgeon to discuss the results?

    Before my ACDF of C3/4/5 I had an EMG that showed neurogenic changes in my deltoid, biceps and triceps and a neurologist said that all levels below C3 were affected.

    Since my ACDF I am still getting pain and symptoms in my neck, shoulders, arms and hands. I suspect that this is coming from C5 downwards.

    I wonder if your fusion adequately dealt with your formaninal stenosis, or perhaps you have had more growth of osteophytes since your fusion. Whatever the reason, the outcome is the same. More pain!

    I can understand how you must be feeling Vin. This just goes on and on.
    We are here to support you through whatever you have to face.

    Please let us know when your appointment is and what your surgeon suggests.
    Take care
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  • like you said...it keeps going on and on and on....i don't have a scheduled appt. He is going to call me. He just got back from vacation today. He is very good, he even answered my email while away.

    It's even more scary because I left my job at a major company and opened by own practice (no long term disability).
    - Vin

    3 level ACDF, c3/4, c5/6/7 in May 2012
  • I spoke with my surgeon last night. It looks like more surgery is in store for me. Last year I had c3/4, c5/6/7 fused. c4/5 and c7/t1/2 have deteriorated since last year. So, he wants me to meet with him and the neurologist who evaluated me to discuss the options. Not happy.
    - Vin

    3 level ACDF, c3/4, c5/6/7 in May 2012


  • It is never good news to hear that we need more spinal surgery.
    I hope that you will be able to take someone with you for this appointment and go armed with questions.

    What was the cause of your neck problems? Accident? Ageing?!

    I did have a discussion with a spine surgeon and asked about the chance of adjacent levels going after a fusion. I was interested to know if some levels were more likely to cause that than others.
    His opinion was that it was more to do with the patient's tendency to have degenerated discs and bones rather than the levels that had been fused. He said that some people have a fusion and don't have any more problems where as others go on to have other levels go and need more attention.

    I wonder what your surgeon thinks about this.
    Please do let us know how you get on and what options you are given.
    We will be here to support you through this Vin. I wish we could do more to help you avoid it.


  • VinGVVinG Posts: 56
    edited 08/12/2013 - 7:16 AM
    I have a new appointment Wednesday with an upper echelon neurologist...Neil Young went to him when he had his aneurism 5-6 years ago. My surgeon wants HIM to do another EMG and assessment as a 2nd opinion (actually 3rd).

    The whole left side of neck, both shoulders, left arm, and the left side of my face hurts (about and 8 w/o pain meds, 5-6 w/ pain meds). There's occasional twitching in my left hand, and in my temples (wierd).

    Any suggestions of questions to ask this neuro guru?
    - Vin

    3 level ACDF, c3/4, c5/6/7 in May 2012

  • I think I would ask him if the pain in the left side of your face is coming from the neck, and if so which level.
    And I would also ask about the twitching in the temples.

    You may not want to know, but I would ask if this is going to continue like a load of dominoes. He won't be able to give a definative answer but his opinion may be interesting.

    Have you had the rest of your spine scanned?
    I hope that you will get at least a little bit of good news at the appointment Vin.

    You are not on your own. You have others here who will support and sympathise with you.

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