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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 am not familiar with anything about your situation. Someone may come around who is.

    Re' Mayo's suggestions to you, it never hurts to get a second or third opinion even.

    However,I can relate to the difficulty of having to accept a "new you". For me it is everyday..what part of my body is acting up? what needs to be cared for the most?

    It took me quite a while to accept myself with my new limitations, til I decided to show myself as much grace as I would show another person. It is reframing my thinking everyday, but for me no other choice.

    You have a sense of being optimitic..it seems...with the way you speak of your healing and your husband. It's difficult to watch our loved ones try to understand the things we are experiencing when we barely understand it ourselves. But it sounds like you have a good guy.

    As time goes on and if limitations remain, you will probably discover other things you are good at. Things that will not tire you so much or things to do at your own pace.

    No one could blame you for cautious optism, but it seems you may be able to adjust to what may be. I had therapy..I still touch base with therapist now and again for some transitional depression.

    I kind of like the new me...limitations and all. It feels so much better than the guilt of not being able to do all I did before and for me..not even being able to remember many conversations. Sometimes it will only be ten minutes after talking with my friend, she refers back to the conversationa and I have no idea what she is talking about.

    Hopefully, your pain will get under control and then life will be more manageable. The pain seems to be the biggest issue and then you can decide what you feel ready for.

    Please keep us posted on how you are. YOu definately found a nice group of people who understand pain and fear of the unknown. YOu aren't alone!
    Spine-Health Moderator
    Please read my medical history at: Medical History

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