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Chiari decompression

Posted , 5 users are following.

stephanielee
stephanielee

Can anyone who has had a chiari decompression let me know their thoughts on the procedure and specifically the recovery? I'm a mom to 4 young kids so I am worried about what my life will look like after the surgery. I have had minimal symptoms to date and just discovered I had the chiari but given how long the syrinx is, have decided I probably need the surgery to minimize any future damage to my spine. Any advice you can give is greatly appreciated. Thank you. 

0 likes, 3 replies

3 Replies

  • steve84688
    steve84688 stephanielee

    Posted

    I had the 5 hour decompression surgery here in the US.  Scary, with long recovery, only to see my symptoms come back within 4 weeks.  Many are helped with surgery, but unfortunately most see their symptoms come back because the cause of the Chiari is not addressed.  Current US medical ideology is that 15% of patients with Chiari have a tight filum (tethered cord) and this tightness pulls their hindbrain down causing the herniation.  However, Dr. Paolo Bolognese, a New York neurosurgeon who performs the tethered cord surgery, did follow up MRI's on hundreds of patients and found MOST found relief from said surgery and he found an average upward migration of 3.5 millimeters for the Chiari herniation.  I had my surgery done from the staff of the neurosurgeon in Spain who discovered/perfected this.  He labels it as "Tight Filum Terminal Dissectum" surgery.  Please do your research on both the decompression surgery and the filum surgery.  God Bless, Steve

     

  • Breium
    Breium stephanielee

    Posted

    Hi stephanielee

    It reads like I am exactly the same position as you, I’m sorry I cannot offer you advice, but I too would be intrigued to know, if there any positive outcomes on this post too! 

  • sharonsha
    sharonsha stephanielee

    Posted

    coming from someone who has had the surgery if your symptoms are minimal i would not do it

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