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Three opinions no one can help me - I'm open for suggestions

yellowboyyyellowboy Posts: 46
edited 06/11/2012 - 8:41 AM in Neck Pain: Cervical
I have had severe pain in my mastoid area for about a year. It goes down my arm into my palm which feels like it is burning. Previously, the pain was just in my neck and shoulder for about 3 years - but did not go down my arm. I had all kind of shots for three years and finally saw a Neuro surgeon.
In June of 2009 I had a ACDF 5 through 7. I had post surgical shots, nerve block and still have the pain. Now my surgeon says he thinks the pain is not coming from the C5-C7 area ! I had a EMG last week, it did not show anything. My surgeon and 2 pain management doctors have told me that there is nothing futher that can be done - I have to live with the pain.
I have tried 5 drugs none worked, I just started Lyrica yesterday, but am not optimistic. The only options I have left are accupuncture and lastly a spine stimulator.

Any suggestions will be appreciated.


  • Howdy Yellowboy,

    You don't mention in your post. Have you had any diagnostic imaging done? MRI, CT, or even X-rays? If they do offer you an MRI, and one is in the area, I would ask for a "Positional MRI" - it is a MRI to which you sit or stand, and then images are taken in the neutral, extension and flex positions. This way your spine is under load, and possibly they can see what is going on? I had a recumbent (lay down) MRI 7 months ago - nothing remarkable showed. I have no lordosis in my neck, so laying down seems to reduce what is really there. 2 weeks later I did a stand up MRI, and bigger than stink, there was the herniation! Just a thought there.

    Please let us know if there is any updates!! Take care.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I know after 4 years and three weeks how debilitating burning/sizzling pain can be. Mine is in my lower back, hips, and thighs and has spread to my C5-7 area. You mentioned being skeptical about Lyrica. Please don't be. It is a truly remarkable drug for nerve pain. In fact, when I can't get samples from my doc's office, I pay $220 a month ( a huge family budget sacrifice) for the privilege of taking this med. Give it a chance.

    And give yourself the benefit of the wealth of information on this site and look at all of the spinal cord stimulator posts, FAQ's, and information about the trial. There is also info under the headaches page about stimulators being used for head pain.

    I have had an SCS (3 leads at T8) for 4 weeks now and am in dramatically less burning nerve pain. It might be a last resort for you, but it is a powerful option. I am happy to be bionic!

    Good luck. We all hope you feel better!
  • Yes, I had X Rays, MRI's (head and neck), EMG but no CAT Scan. All have not shown anything. I'll give Lyrica a chance.
    Mackenzie, I can't complain compared to you - thanks to my script plan I paid $ 18.00 for a 1 month supply.
    How long was it before you noticed help from the Lyrica ?
    Thanks for the replies
  • A couple of thoughts. First you are only 6 months from surgery. It sometimes takes a while for the nerves and muscles to figure out that the pain is gone. This may sound strange but it happens.

    Second did you have this pain before your surgery? Your first post isn't quite clear about the sequence of events. You say you had pain for 3 yrs and 1 yr.

    It sounds like you may need to start at the beginning with an orthopedist. This may be rotator cuff, carpal tunnel, tennis elbow or a completely diff level of the neck. If your docs can't keep their minds open you might want to go to a new doc.

  • Ask your surgeon to request a CT scan with restructuring views. I am just like you and finally asked for these, and low and behold, it showed my screws are loose, I'm not fused at all at the upper level, and now, he's suggesting a posterior surgery to add screws and BMP to help the fusion. I'm synical about doctors now. I seem to have to push and push to get an answer. All of my xrays have been fine and I was told there was nothing more they could do for me. I go for my first pain mgmt appt. this coming Wed....I'm not all that rev'd up for another surgery either, but at least we know more why I'm having the pain. Even after the proposed surgery, my surgeon says I have a 50/50 chance of not having pain afterwards. Doesn't sound all that helpful. For now, I'm considering it....and have been trying to get another opinion, but getting in to a new surgeon is like Fort Knox. They all require referrals and then they decide whether they'll see you or not. I guess they have so much business they just don't care.ARGH!

    Good luck finding the source of your pain. Maybe requesting the test above will show something the others have not. It takes slices going down your spine highlighting only the bone and hardware, so it's more obvious if the screws or bone are in place.
  • Thanks I'll check to see what type of MRI I had. I considered the time factor and that it's only been 7 months. But my surgeon says if it was related to the surgery area the pain should be going away by now.

    What I meant with the pain timeframe - the pain started 3 years ago in my shoulder and then migrated to my neck and has been MAINLY in the mastoid area for the last yaer.
  • Ask them to look down into the top of the thoracic area. My problem came from t1/t2 which is rare but the pain was the same as you get from c4-7.
  • dilaurodilauro ConnecticutPosts: 9,875
    We have some surgery, we have diagnostic tests done, but there is nothing that can identify why we are having the pain we do.

    I dont have any magic words to say how this can all be resolved. But, from a patient's point of view, if your doctors are telling you there is nothing they can do for you, no surgical solutions, etc.... Then your option is to just deal with that OR seek another opinion. Many times another view at a problem can provide a solid solution
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • hey there
    KrisNY hit the nail on the head... about you still recovering,,,,,,,,muscles, nerves, etc....
    I had a posterior cervical foraminotomy on C5-6 & C6-7, in April '09 (9 mos ago) (4" incision) I still recovering. So very very painful it was, & still is. Vicodin only took the "edge" off the pain.
    I did another MRI too & nothing showed up. Finally I went to an ortopedic surgeon, 3 wks ago, by choice, because I was hurting even worse than before surgery. He said to s-t-r-e-t-c-h & get aggressive with it because my trapezoid muscles had shortened due to "guarding" the neck. He shot some cortisone into the muscle & said it takes time to heal & for the muscle to reach new lengths. Time & ALOT of stretching! I read that I could be in pain another year if I don't exercise at all. Feeling 99.9% healed now - f-i-n-a-l-l-y! phew #:S
    I was scared to death, because no one had an answer. I know how you feel.
    take care & I sure hope you get some relief soon
    Hey there Kris! How have you been. You sound good. How was the surgery & recovery from the T1? Hope it did the trick,,, sounds as though it did.
    hugs ev1
  • Thanks to all for the help, I'm doing allot of excercises and may try accupunture if it doesn't get any better.
  • I was going to try accupunture myself if this Orthopedic guy didn't have the solution. Just keep on searching until you find some answer & get some relief. It seems that doctors out there only specialize in ONE thing, neck, back, foot, leg, little finger, etc... Finding the right one has been my mission. Ron, up there, said "many times another view at a problem can provide a solid solution" and that is the TRUTH!!! Keep on searching.
  • Hi Yellowboy,

    I know you had a emg study but keep in mind they are hit and miss and aren't the end all of test. They can and often do give false negatives. I have seen some members who have had the surgery and needed a epi injection to put them on the right course of treatment following surgery. How is your fusion itself coming along are you fused completely? After you had the surgery was the pain gone and it has gradually returned over time or was this pain there following surgery? Lyrica is a great med when dealing with nerve med. keep in mind if this drug doesn't help there are other meds available. It is of my belief that recovery following your surgery does and can take up to a year. When nerves are compressed they take much longer to heal. With that being said a myelogram with CT will give a good look at the hardware and the surrounding nerve roots. When you had the MRI was that with dye or without? As others have said i do think sometimes a fresh set of eyes can help. Give the lyrica a chance and if it don't help seek out another opinion. What does the other areas surrounding your fusion look like? You may want to check out the video on cervical radiculopathy and see if you have any of those pain patterns or look at a dermatone map. Below is a link also to myofacial pain syndrome that maybe helpful in your situation. Whatever you do keep looking for answers and choices. Keep us posted. Take care.

  • Yellowboy-
    I was on Lyrica from Wednesday through Friday before noticing dramatic effects. I titrated up slowly to avoid the side effects. My insurance won't pay for my off label use (i.e. fibromyalgia, postherpetic neuralgia, diabetic neuropathy, epilepsy).

    I wish you luck!
  • Hi Tamtam,
    Yes I am completely fused. The pain was gone and then gradually came back about 2 months after surgery. Since then I had MRI's with and without dye. I have tried Celebrex, Mobic, Neurontin,Tramadol and Voltaren. Now on Lyrica for 6 days so far. I was told give it 2 -3 weeks ??

    I continue with weights that I was doing during PT but have not done stretching lately - I am going to start again.
    Thanks for the tips.
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