Face Pain, Pain in my spine

General
1

Hi, I'm not new here I usually just read your stories and pray for everyone. I have posted a blog about my experiences. I'm post opt 2 years this December with a decompression and a fusion of C1 and 2. Sad thing is I still haven't collected all my information on the 7 or 8 I don't even know now how many MRI's I've had. I still struggle with the pain in my neck, head, shoulders and areas of my spine. I have memory loss, visual problems, dizziness when I go from sitting to standing, amongst other symptoms. I have been tossed from one pain doctor after another. First one did the injections into my neck- didn't do a thing. Second one seemed to have studied my info before seeing me. He suggested the neuro stimulator, and cognitive therapy. Third one was abrupt and because sometimes I can't remember things my husband was there to help, the doc wouldn't let him speak. Anyway he went through my file of stuff in front of me and after a brief run through of the walk test, strength ect he decided I needed to go back to physical therapy, and added a muscle relaxer-baclofen, and upped my gabapentin. Gave me samples of the flector patch and talked about botox injections. This just added to the meds I already take which consist of Effexor, sulindac, gabapentin, and oxy.

I feel very lost with what direction I should go in. For the last week now I have struggled with the onset of a migraine, crazy pain in my spine although doctors only see 4-5 bulges that are nothing, and that face pain I had before my surgery where it can go from pressure to feeling like someone smacked me with a 2x4. Does anyone else deal with the face stuff and any suggestions on things you've tried?

2

Yes, I deal with face pain, as well as teeth and jaw pain. The teeth pain can be helped with a “kanka pen” has to be the pen to work on me. The face/jaw pain I have had no luck with that at all it seems. It sounds like you also suffer like a lot of other Chiari people after decompression, it seems like no one wants to help once you have had the surgery, they just don’t seem to want to deal with you or take you serious. I had my decompression in early 06, I have been disabled since Jan06 and woke up worse off. I did not get relief, some symptoms don’t come as often but other new ones crept up and badly, and the memory issues! Oh I can relate to that! I am following my Doc’s recommendation and heading to the Chiari Institute in Great Neck, NY, I have heard good things about them. They also helped someone I actually know, and they are thorough and look at many things as well as the obvious. I guess I would try that if I were in your shoes as well, I’m thinking you may benefit from TCI and possibly save yourself some frustration. :slight_smile: Keep us posted.

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Cat, I get the face pain to, it comes with the Chiari headache for me. I agree with Jennifer that it may be beneficial to consult with a different surgeon- and one who screens for the post decompression culprits (EDS and POTS). I’m waiting to see a new surgeon myself about continued pain. My thought is why suffer if there is a possibility that something else could be fixed. There’s still a lot of life ahead and i
want to be rid of the pain! (And ugly neck brace!)
Jenn