Undiagnosed and rare conditions
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sheZZasheZZa Member Posts: 232 Pioneering
I’m not sure if I’m in the right place but does anyone suffer with a CSF Leak and/or a TVTO?


  • Ami2301Ami2301 Member Posts: 7,418 Disability Gamechanger
    Hi @shazza I have just looked around the forum and have not come across anything or another member with TVTO or CSF leak - would you mind telling us a bit more about them?
    Disability Gamechanger - 2019
  • sheZZasheZZa Member Posts: 232 Pioneering
    CSF Leak is also known as a spinal leak and is often acquired after an Epidural or spinal block although they can happen spontaneously. It is where the needle punctures the dura which is the protective membrane which covers the spinal cord and the brain. When the dura is punctured the fluid which supports the brain and allows  it to float in your skull drains away leaving your  brain dry and then it sags down your neck into the spinal column. The pain is excruciatingly debilitating and has lots of very unpleasant symptoms.  The only relief is to lay flat which allows CSF fluid to build up and so ‘float’ your brain but once upright the fluid leaks again and you’re back to square one. TVTO/TVT is a mesh/tape which is used to treat stress incontinence in women. It is made of polypropylene and should not be inserted into the human body. It goes hard and cuts through organs, nerves, muscles and tissue etc.which causes excruciating pain and is very debilitating. Complete removal is nigh on impossible. Mesh is also used to repair hernias especially in men. The mesh is also known to be a cause of fibromyalgia, ME (which I also have)and other autoimmune illnesses.
    They are all very debilitating. I was just wondering if anyone could relate. 
  • Ami2301Ami2301 Member Posts: 7,418 Disability Gamechanger
    Hi @sheZZa we do have many members in our community who have Fibromyalgia and M.E/CFS. I'm sure they will be happy to get in touch to offer support and share their experiences.  Let us know if we can help you further :)
    Disability Gamechanger - 2019
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