Lilou Van Dyck. Neuro-Cranio-Vertebral Syndrome. Filum disease. Descent of the cerebellar tonsils (Arnold-Chiari Syndrome Type I). Intramedullary cyst (Idiopathic Syringomyelia). Odontoid retroflexion (RTO). Suboccipital craniectomy (CSO).

Published by ICSEB at 28 September, 2018

Testimonial:

“Hello, I am Lilou’s mother. She is 10 years old now and we come from Belgium.

Today we are at the Institut Chiari & Siringomielia & Escoliosis de Barcelona (ICSEB) for the 1 year check-up after the sectioning of the filum terminale.

Everything started when she was 7, as she used to complain of strong headaches with vomiting during the night. Therefore, we decided to see a Belgian neurosurgeon, who recommended a cerebral MRI in February 2016. It was then when we received the Arnold Chiari and Syringomyelia diagnosis. One month later, Lilou underwent a craniectomy with laminectomy and dura mater plastic surgery in the same surgical session. She had no complications; the surgery went well, but unfortunately, she kept getting worse, until she ended up in a wheelchair. She couldn’t walk, she suffered from paralysis and terrible neuropathic pain. She got to the point that she asked for the euthanasia, she wanted to die.

We felt so little understood, my husband and I felt powerless, so we decided to take action and search the Internet, where we found the ICSEB. We arrived in Barcelona in February 2017 for a first consultation. At that time, Lilou could walk with the help of crutches, but a month later, when we returned for the sectioning of the Filum Terminale, she was in a wheelchair as she couldn’t walk any more.

One hour after the surgery, she was able to move her feet, then she started to walk very fast and, above all, she was no more in pain.

Lilou, how are you feeling now, one year later?”

“Well, it’s super cool because I do not feel pain. If there are other children who have the same condition as mine, I really advise them to come here, because they will feel better and they will stop having those strong pains.”