Different aymptoms

Posted , 4 users are following.

I have Chiari malformation with aqueduct stenosis and fluid on brain. I had a etv surgery but ct scan showed no change a month after. My symptoms are all back. Headaches, neck pain, pain in throat almost as if tubes there. Pain across shoulders back and spine. Also a weakness down left side. Numbness down arms n legs and face. With trouble speaking. Feels like sometimes when u go to talk u feel like ur not gonna be able to. More now I’ve been getting more severe pain in my bones and joints  when walking it feels like went over n ankle. All my eye sight probs back sensitivity to light, shadows, floaters. Anyone else had these. Even getting mri had severe pain in spine and back of head seeing shadows and dots 

0 likes, 4 replies

Report

4 Replies

  • Posted

    Dear Jennifer,

    It must be so terrible to feel that symptom each second ..you need to be firm and ask your health care professional to help you ..or get the ''Pro Bono'' solicitor to help you ..they cant leave you with this... but listen to your body if you feel like that take it esyt - but get that sort it through your neurologist and neuro surgeon

     

    Report Reply
    • Posted

      I know compared to others I have been getting seen a lot quicker than others but it just seems to be a waiting game. Just fed up not being myself. Wanna get back to my old self for my kids. Thanks for your reply. Are you affected by these symptoms 
      Report Reply
  • Posted

    Hi

    I have been experiencing similar problems recently. I was diagnosed last October with chiari and syrinx and saw surgeon in march who was willing to add me to surgery list bit I frwaked out a bit and said i wanted to wait a while. My symptoms are worse now, numbness on left side, extreme head pressure which feels like my ear drums could burst. Awful neck, shoulder and back pain. I'm seeing g the neurosurgeon again tomorrow to def be added to decompression list. Has anyone any advice on what I need to ask specifically?

    Report Reply
  • Posted

    Research Filum Terminale Dissectum surgery...it is a form of tethered cord surgery that treats the cause of Chiari and its related syndromes and symptoms.  Three US neurosurgeons perform this surgery, and one in Spain (that is where I had mine done).  It releases the downward pull on the hindbrain, creating room for the CSF flow, providing decompression of the cranial nerves.  The Chiari decompression surgery did nothing for me, but the Dissectum surgery got me out of bed after 2-1/2 years!  Back to raising children, running the household, traveling, caring for my parents and now trying to help others.  Please research this and have FAITH.
    Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up