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amyboorie1977
amyboorie1977

Hi all. I'm a long time chiari malformation patient. I had decompression surgery with a laminectomy a little over 15 years ago. I wasn't expected to walk again due to other spinal problems, but I walked out of the hospital. My question is: is there anyone out there who has had the surgery years ago whose having symptoms again. My balance, co-ordination, and memory is getting bad again. I'm not having severe headaches but I've got really horrible neck pain. I had an MRI done 2 years ago, but it didn't show anything new. The neurosurgeon that did my surgery is no longer at the practice, he's now a pediatric brain tumor specialist. I haven't found a neurologist who will consider chiari as a reason for my issues. Any advice would be helpful.

0 likes, 6 replies

6 Replies

  • susan07083
    susan07083 amyboorie1977

    Posted

    Many thanks for your reply every bit if information helps its a worry to put my daughter through a big operation for the symptoms to re-occurs need to speak to neurologist to find out her options
    • amyboorie1977
      amyboorie1977 susan07083

      Posted

      Hi. The surgery is well worth it. I'm just experiencing symptoms like before I had my first surgery. Please don't be discouraged that symptoms may return. Many people never again have symptoms. I, on the other hand, am dealing with an autoimmune disease, undefined yet as I'm in the early stages of diagnosis. I'm just trying to find out if other patients who have had the surgery years ago are developing symptoms again.

  • susan07083
    susan07083 amyboorie1977

    Posted

    Realy hard to watch your child suffer the illness taking over her daily life even though she determine to complete her 3rd year at uni. I like to think there light at the end of the tunnel and I can help her find the right treatment and if surgery is an option for her quality of life thats the way to go
  • mandyrice
    mandyrice amyboorie1977

    Posted

    Hi, I had my decompression 1994, I am now having problems with no soft/sharp feeling down my entire left side of my body, problems walking, balance, dizzy spells, neck and head pain, vision, I have a prism in my right lense of my glasses, as my left eye bounces and cannot focus, problems with checking, and a Syrinx extending from a foramen magnum to T10. Pins and needles in my left arm, and waking with it as cold as ice. My posture is not good, with my neck almost slipping into my back. Hope this helps you.
    • mandyrice
      mandyrice

      Posted

      That should read choking not checking, my apologies
    • amyboorie1977
      amyboorie1977 mandyrice

      Posted

      Wow, so you're about 25 years post op. Your comment helps me greatly to understand that I'm not going insane and that my neurologist is full of crap. Sorry to hear that you are having so many problems.

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