Chiari type 1 Malformation (https://institutchiaribcn.com/en/diseases-we-treat/arnold-chiari-syndrome/) is something she was born with, however over the years as she has been getting older, symptoms have worsened and are really affecting her adult life. She is no longer able to work and is currently on long term disability. Chiari has caused irreversible damage to her cervical spine, lumbar spine as well as Filum disease (https://institutchiaribcn.com/en/filum-terminale/) in her lower back. Other ways Chiari and Filum affect her are with ongoing Gastrointestinal issues, she chokes when she eats and drinks, sometimes she cannot hold her head up for more than an hour. Chiari has also caused permanent damage to the disks and spinal column in her whole back making it so she can only sit up and be out of bed for a couple hours at a time. If she overdoes it, she will have a flair up and it can last from a day to weeks. A flair up causes her hands to tremble with pain similar to Parkinson’s disease, and headaches and full body weakness. She gets dizzy and her memory is affected which then increases her anxiety and panic attacks. Unfortunately, as she gets older the flair ups last longer and take longer to recover from.
The surgery to help fix Chiari here in Canada is a decompression surgery where they remove a part of your skull at the back of your head about the size of a loonie and your c1 vertebrae allowing more room. In Canada, Doctors only do this surgery to prevent mobility and mortality..So, my only option after a 10 month wait her to speak with a Canadian neurosurgeon is to have pain therapy at the hospital. However, as a 36-year-old single mother of two teen boys, pain (opioid) medication isn’t an option that she is comfortable with.
About 12 months ago she started investigating how the rest of the world deals with Chiari and that’s when connected with Elena. Elena is from Spain and she works in Barcelona’s Chiari Institute (https://institutchiaribcn.com/en/). Elena has helped her order all of the right tests here at home, she helped her stay calm and, in the moment, she responded to all of her e-mails and has not let her get scared or give up.
Finally, July 1st, 2020, she received my preliminary consultation from Spain and a phone number to a man who lives here in Langford who had the same procedure done last October down in Barcelona. He told her the benefits to the surgery were noticed within days of it being done and he has not needed any further health care. He explained the Chiari institute is in a very clean state of the art cancer hospital down in Barcelona He went on to explain they had to cover all cost on their own. The cost of the surgery in Spain is $19,300 Euro’s which equals $30, 308 Canadian dollars They discussed the out of country surgery option to apply for MSP funding. To apply for this funding, you need to have a Neurosurgeon recommendation and fill out the form on your behalf, unfortunately, Canadian Neurosurgeons do not like to apply for this funding, perhaps because it is an out of country surgery. So that is where she is at, she has exhausted all options and and is at a point where she needs to ask for help.