Having written briefly about my sudden surgery and some of the snatches of ordinary moments during recovery so far, I thought it might be an idea to write about what is actually wrong with me, why I needed the surgery in the first place. So here is a bit of an explanation, which may be rather boring!
There are actually several things wrong with me, the main one being Arnold Chiari (key-AR-ee) Malformation, A Chiari malformation is when part of the cerebellum, or part of the cerebellum and part of the brainstem, has descended below the foramen magnum (an opening at the base of the skull).
Usually the cerebellum and parts of the brainstem are located in a space within the skull above the foramen magnum. If this space is abnormally small, or if there is something above pushing down, or something below tthering the spinal cord down, then the cerebellum and brainstem can move down towards the top of the spine. This can cause pressure at the base of the brain and block the flow of cerebrospinal fluid (CSF) between the cranial and spinal compartments.
Symptoms of chiari malformation vary and include neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected. Symptoms may change for some individuals, depending on the buildup of CSF and resulting pressure on the tissues and nerves.
Many people, myself included, have a really difficult time in getting diagnosed, largely because symptoms don’t often appear until adolescence. For me, I had headaches, migraines, backache, depression, hearing problems and balance issues, all of which were put down to general hormonal changes. When I was pregnant with Cheeky Chap, I was diagnosed with symphsis pubis dysfunction (SPD) and was on crutches from around 20 weeks and within a few weeks after that I was signed off work. The pain from the alleged SPD, along with headaches, migraines, backache and other symptoms all continued long after Cheeky Chap was born. About six months after Cheeky Chap was born, I finally used my private medical insurance through work (months before being made redundant) and was able to get some tests done and diagnosed with Chiari Malformation.
Chiari Malformation can cause other conditions; spina bifida, hydrocephalus, syringomyelia and tethered cord syndrome. I have hydrocephalus which is an accumulation of excess fluid within your brain and syringomyelia in which a cavity or cyst (syrinx) forms within the spinal column. Just before Christmas 2013 I had surgery to help with the hydrocephalus, which you can read about over on Mental Parentals blog which needed to be done before having the more recent surgery, since that in itself can cause hydrocephalus too.
Ultimately, there is no cure, yet, for any of the conditions I have. The more recent surgery I had is to stop the progression of the neurological damage to my body although there is a chance that it may make my mobility and pain levels more manageable, for a few years at least. It will be some months before we know the extent of the ‘success’ of the operation but my consultant is optimistic.
I hope that’s cleared a few things up, do let me know if you any questions or if you would like me to explain what my surgeon did, the actual operation.