Suzanne’s DBS Story

Suzanne's DBS Story

You may hear drills, I’m not sure. Although not unconscious, you are heavily sedated as we cut through your skull” said the anaesthetist. Okay, the Deep Brain Stimulation Surgery Admission Pack stated this. It is also what the anaesthetist told me in yesterday’s consultation. Surgery is finally under way.

After 24 years living with Dystonia, a rare incurable neurological movement disorder, there is hope. With muscles feeling like sailor’s knotted ropes twisting against the force of cyclonic seas, there were months of preparation before genetic testing cleared me for brain surgery. I do not have the troublesome gene preventing successful surgery. This may end travelling from Cairns to Brisbane every three months for botulinum toxin (Botox) injections into many muscles; vocal chord muscles tightly spasmed together, making speech harsh and effortful; muscles twisting my head back and to the right; spasming muscles at the base of skull; eyelid muscles spasming eyes shut; muscles in shoulders and lower back twisting me with strong spasms; muscles turning feet inward so toes pull down and soles of feet face each other.

It started in 1990. First appearing as though vocal chords alone were affected. In 2004 I was sent to Brisbane for a second opinion by a neurologist specializing in movement disorders such as essential tremor, Parkinson’s disease and dystonia. Diagnosed with laryngeal dystonia, also known as (aka) spasmodic dysphonia, I began Botox injections through the front of my neck into vocal chord muscles, thus allowing those muscles to relax. Glorious exaltation! Although my voice became very soft and high pitched, I could speak!

Soon, I succumbed to other forms of dystonia. My head pulling back and to the right, impossible to see where I was stepping, nor what was in front of me. Now diagnosed with cervical dystonia aka retro spasmodic torticollis. This rapidly progressed to lower back dystonia quickly followed by eyelid spasms aka blepharospasm dystonia, then lower limb dystonia. Unbeknown to me, cousins were diagnosed with various forms of dystonia. One of my deceased maternal aunts had been diagnosed with cervical dystonia. My mother, also deceased, had symptoms of laryngeal and cervical dystonia although, not diagnosed. This is understandable. Very few people have been diagnosed correctly until recent time. Two of my adult children experienced episodes of cervical dystonia. One progressed to lower limb dystonia. My diagnosis now? Progressive familial multisegmental dystonia!

Finally the anaesthetist said, “We are putting you to sleep now. Time to put leads from your brain between skull and scalp, down to chest attaching them to an internal neurostimulator.” Almost over. Hooray!
Twenty-four hours in intensive care before returning to the ward. Discharged five days later. Staples in top of skull, eyes open, walking upright, head straight, feet in order, good voice. I still have the incurable neurological disease. However, successful deep brain stimulation surgery means smooth ripples of obedience to neurotransmitters from my brain to muscles. The constant nightmare of living with painful symptoms of dystonia ends!

One thought on “Suzanne’s DBS Story

  1. That sounds like you have had a very successful outcome Suzanne. I commend your perseverance over so many years, and sincerely hope the DBS continues to provide the benefits you have seen so far.


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