I wanted to share another traumatic health journey of Fernanda Dias who also goes by ‘Nanda’, diagnosed 7 years ago with a degenerative disease in the spinal cord called syringomyelia, a cyst that forms inside the spinal cord leaving the legs and arm to become paralyzed (both myself and my son were both diagnosed with pre-syringomyelia and I’m so thankful that at the time of surgery it had not fully formed). Seven years ago she had a strange pain that started in her neck, arms and the left leg. She was finishing her master’s degree and thought it was stress related but the symptoms started to spread and became unbearable. The pain no longer let her sleep and she had extreme tiredness along with electric shocks, contractions and spasms of the muscles of the head causing intense headaches and loss of strength of the left side of the body, she had tingling and numbness in both the left hand and foot. Added to this was the anxiety and depression from living with chronic pain. In the UK, it was challenging to actually get referred to a specialist, so on a trip to Portugal to visit family, she paid for an appointment with a private neurologist who got her an MRI of the cervical spine and there she found the partial answer to her question. They found the syringomyelic cyst that formed inside her spinal cord. Back in the UK she had to continue to advocate for herself to get additional MRI’s required to get a full picture and once she had the images she searched on the internet and found the Institut Chiari & Siringomielia & Escoliosis de Barcelona and sent her MRI’s to them for feedback. They diagnosed her with Neuro-Cranial-Vertebral Syndrome also known as Filum Disease, Idiopathic Syringoymyelia and Scoliosis, chiari type 0. Why this is so dangerous is that the cyst can continue growing and cause total loss of movement in the legs and arms and increased difficulty in breathing and swallowing. Nanda did her research and although she had no support from the drs in Portugal and the UK she booked her surgery with the institute in Barcelona and is now living normally and she is able to dance and do acrobatics again! Here is Nanda (below) over a year post extradural filum terminale sectioning surgery!! The amount of pain that she had from the syringomeylia (cyst that forms in the spinal cord) kept her from doing anything active and she spent months on the couch prior to her surgery. I’ve said this again and will continue to say it, this research of the filum terminale ligament which is the root cause of chiari, syringomyelia and scoliosis absolutely needs to be researched this way all over the world. Our medical communities unfortunately have all the wrong information! I’m so happy that Nanda DID NOT listen to her drs in the Uk or Portugal or she would have ended up with chronic pain and loss of movement for the rest of her life. I urge anyone having symptoms that your home country drs are unable to help with to please send your MRIs to the Institut Chiari & Siringomielia & Escoliosis de Barcelona for feedback! Wishing Nanda all the best health, continued healing and great happiness in the years to come!
