Notes from Susie Beard’s talk at the 2019 Melbourne Conference.

Susie had been diagnosed with both Parkinson’s Disease and Orthostatic Tremor (OT).  She had severe movement disorder symptoms, unable to walk in a straight line and great difficulty for tasks like carrying a glass of liquid or a plate of food.  This was so extreme that at times she could not move and had to lie down for a “little rest”, even if that was on the front lawn between the car and the house after shopping.

She had been in consultation with her neurologist Dr Wesley Thevathasan at the Melbourne Deep Brain Surgery unit (associated with Cabrini Hospital in Malvern) and they were planning a DBS procedure aimed at relief of the OT symptoms.  But Susie developed an autoimmune reaction to Levodopa, one of the key medications in the treatment of Parkinson’s Disease (see this article for a good discussion about Levodopa and Parkinson’s Disease).  And as a consequence they decided to change the DBS focus from OT to Parkinson’s Disease; this means aiming at a different part of the brain, the Subthalamic nucleus (STN) instead of the Thalamus.

The surgery involves implanting electrodes in the STN, some under-skin wiring to an internal battery and stimulator controller that is implanted beneath the collar bone (a bit like a heart pace-maker).  This  is Susie’s internal “thingie”.  She also has one external “thingie” that is used to control and tune the stimulator, and another external “thingie” to recharge the battery.

The Melbourne Deep Brain Surgery website has a good description and more detailed explanation of the DBS procedure.

Susie had the surgery about 10 weeks before the conference.  The results are remarkable: no tremors, the stiffness in her legs is gone, she can walk, stand up, carry objects.  Even more remarkable is the co-incidental improvement in her OT symptoms; so despite the surgery being aimed at Parkinson’s Disease, between Susie and her neurologist they believe there has been a “70% improvement” in her OT symptoms.

Susie kindly took questions from the audience.

Q: How long will the device last?
A: This model has a small battery (so it needs to be recharged weekly), but the trade-off is that the device is expected to continue working for longer, about 10 years.

Q: What was/is your drug regime?
A: Before the operation, 2 tablets of Levodopa 3 or 4 times a day (Parkinson’s) and Gabapentin (OT).  After nothing.

Q: Did you find the surgery to be very invasive?
A: By that I assume you mean the bit where I am awake and they are drilling holes in my head?  No look, honestly, it’s not that bad, I found it fascinating actually.  I work in a hospital, I’m not clinical, and I was really curious, so to be in an operating theatre and see what goes on, and to experience that was amazing.  So for a start you have an anaesthetist and you can’t feel a thing, they won’t let you be in pain, and he plays music for you and there is so much going on around you and so many lovely people, it’s quite entertaining, or should I say plenty to keep you distracted from what’s really going on for those 4 hours.  So like I said, it’s really not that bad.

Q: What was the cost?
A: With private health insurance, about AUD10K out of pocket.  This does depend on the health fund, the hospital and who does the surgery and may be as much as AUD25K.

Q: Do you have to be careful?
A: Yes.  MRIs and scanners are to be avoided, so hospitals and airports are a challenge.  Should a Magnetic Resonance Image (MRI) be needed then Susie needs to do this through her DBS provider.  The MRI equipment is used but using Nuclear Medicine, with the magnetic part of the equipment turned off.  The current generation of implanted devices are apparently more robust and are likely to shutdown rather than cause any serious problem in airport scanners; this will require the stimulator to be turned back on using the external “thingie”.

Q: What is the post-operative and on-going treatment regime?
A: Initially weekly visits to the neurologist to adjust the stimulator as brain swelling diminishes after the surgery. Then bi-monthly and then 6-monthly visits. These visits are not covered by private health insurance, so the normal Medicare and patient gap rules apply (like any other doctor’s visit in Australia).

Q: Is the strong Yorkshire accent a side-effect of the surgery?
A: Er, no it pre-dates the onset of OT by many years.