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Occipital neuralgia following craniotomy

alihop01SNaalihop01SN Posts: 2
edited 06/11/2012 - 9:01 AM in Neck Pain: Cervical
I have posted on many forms but never heard back. The topics here are very intEresting and everyone seems to be open to talkin so I am excited.

I am wondering if anyone deals with conditions similar to mine and if they have any advice. I had a brain tumor removed four years ago that had affected blood flow to the brain. Surgery went well until I started having seizures. After four Er trips they finally found a blood clot. I shouldn't have lived so I know I am here for a reason! For six months after surgery I felt great - got married to the kindest man and thought all of this was behind me.

One morning I woke up with awful occipital pain. We did trigger point injections and nerve blocks but got no where. My pain spread to the face and felt like an ice pick was stabbing me. The occipital and neckpain are a constant between an 8 and a 10 on the pain scale. The face is always a ten but luckily isn't always there. Recently I have had arm, hand, back and leg pain. Mayo wanted to do an experimental brain surgery on me and I declined. Now a local doc thinks everything may be nerve damage from a craniotomy. I just had facet and nerve injections and am waing to see the results. The day of injections I had no pain for thirty minutes and the doc is optimistic. I'm not sure how I feel because these don't seem to last.

I am still hoping to work and struggling with the fact that it may no longer be an option.

Thanks for your time and I would love to hear advice and your stories.



  • SavageSavage United StatesPosts: 5,476
    I do not have any personal experience with your situation. But I wanted to acknowledge your sharing of your situation.

    Besides painful, it sounds unbelievably frustrating.

    I find it so encouraging that you would speak of being here for a reason (and I believe that to be so true, also)...and you married a wonderful man. It seems as you try to discover what is causing this pain and what you should do about it ... your attitude is so positive and in that you are an encouragement to others..like me. :)

    The only thing I can think of is maybe second..maybe third.. doctor opinions. It is so good you have your husband to help you listen to what the docs say and to help you with your decisions.

    I wish you the best as you make your decisions and I hope you could keep us posted on how you are doing.
    Spine-Health Moderator
    Please read my medical history at: Medical History

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