In July 2020, my son who also suffers from Chiari Malformation had a minimally invasive surgery at the Chiari Institute in Barcelona. He has been symptom free since and his brain herniation went from 21mm to 5.3mm in 2 years.

After i became very poorly an emergency CT and MRI confirmed I also had Chiari. Chiari is when part of your brain, the cerebellum is herniating out of your skull and pressing against your brain stem. This leads to a multitude of symptoms from extreme headaches and pressure in the head, neck pain, poor balance and coordination, numbness and tingling of hands and feet and muscle weakness. It also affects the central nervous system which then interferes with messages sent to and from the brain, leading to dysregulated heart rate, breathing, temperature, hormones and nerve pain. For the past 10 years I have been declining in health and after a hospital stay in March with a suspected stroke, I was further diagnosed with an additional neurological disorder. Losing strength and feeling in my left side has not improved even after 6 months of injections to repair neurological nerve damage. This is now spreading to my right side and I experience symptoms similar to M.S and stroke daily, caused by Functional Neurological Disorder. In the UK there is a lack of knowledge and understanding on Chiari and no dedicated Neurosurgeons to treat this condition. There is no research to look for alternatives to the invasive decompression brain surgery which is only offered to patients once fluid filled cysts form in the spine or there is permanent damage. This however is not a cure, once the damage has been done it can not be reversed.

In Barcelona the clinic is dedicated to Chiari, with over 40 years of research they created a minimally invasive surgery where the bottom of the spine is cut and sectioned to relieve the pressure and pulling on the brain.