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Living with Chiari Malformation

Sarah Maccalum discovered she had this rare medical condition following a car accident but many people go undiagnosed for years.

Chari Malformation refers to a group of deformities of the hindbrain (cerebellum, pons and medulla oblongata). Essentially it is a structural defect in the base of the skull and cerebellum, the part of the brain that controls balance. It is a congenital deformation which results in the brain itself sitting too low down into the spine. Often it can be brought on by a brain or head trauma but it is also possible to be born with it. Very little is known about Chari Malformation, with little reporting being done to date.

How did you discover you had Chari Malformation? It’s a very tricky deformation as the amount the brain has herniated bares very little correlation to the symptoms felt by the patient eg someone with very little herniation can find the condition totally dehibilitating and conversely someone with a much greater herniation might have no symptoms at all - and every combination in between.

In my case I have quite a large herniation but I had no symptoms and no idea I had the condition until I had an MRI following a car accident and had sudden onset of extreme symptoms and was therefore hospitalized. My brother subsequently discovered he had the condition too and had always suffered headaches and migraines.

What are the side effects of the condition? Quite commonly a side effect of having the condition is another (more rare) condition called syringomyelia which is a syrinx (or cyst) in the middle of the spine. (I have this). This can cause degenerative effects of the spine and corresponding nerves.

What happens following the diagnosis? On this finding and the fact my symptoms were so sudden, acute and prolonged, I was put forward for decompression surgery.

CM is classified by type eg 1, 2, 3. Mine is 1. I think most children born or diagnosed with type 2 or 3 don’t survive or are very severely effected in terms of brain function, mobility etc.

Unfortunately both my brother and I suffered quite severe side effects of our surgeries. I faired better in terms of end outcome, my brother has struggled much more. Interestingly, we had the same surgeon. It’s a condition that was always thought to be very rare and not have genetic significance. Although nowadays more people are being diagnosed and a lot more research is being done.

Another interesting angle for me personally, is how this affected my pregnancy and more specifically the mode of delivery (there are very serious implications of pushing during labour and administering a spinal mode of pain relief for example).

“Patients with Chiari 1 malformations who have minimal or equivocal symptoms without brain or spinal cord pathology can be treated conservatively. Mild neck pain and headaches can be treated with analgesics, muscle relaxants and occasional use of soft cervical collar.

Symptomatic patients should be offered surgical treatment. Under general anaesthetic, the cut is made at the back of the neck and the surgeon removes the small piece of bone from the base of the skull and a small piece of bone from the spine” Dr. Venkatraman Parthasarathi - Specialist Neurosurgeon, Mediclinic Parkview Hospital

There is alot of research on Chiari malformation and it is still ongoing. More awareness can always help on conditions such as this. The long-term effects include long-term pain, syringomyelia (the pocket of spinal fluid in the spinal cord). Lifelong damage to muscles and nerves can also be experienced. The best thing is to consult a Neurosurgeon if you are worried. The specialist will have a better idea and knowledge about the Chiari malformation and the treatment will be appropriate.”

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