My name is Hilary and I live in Sydney, Australia. After 25 years of tremor my Essential
tremor with dystonic features rapidly got worse. This meant no eating out because I made a
mess, only having half a mug of coffee in case I spilled it and only writing
after several glasses of wine…… This
lifestyle was not comfortable or easy.
Something had to be done!
DBS surgery was suggested by a neurologist in March 2019, by
the time I saw the surgeon in May I had decided to go ahead and was operated on
in mid-July.
I felt that surgery was the only option. Even if I didn’t like the thought! I had
tried drugs which didn’t work for me.
I read a lot about the operation online. The Dystonia Network of Australia has a brochure
about Deep Brain Stimulation surgery www.dystonia.org.au .
You need to join to get their brochures.
There are several are several YouTube videos of the
procedure. I didn’t watch them
I chose to have a
rechargeable battery as it is smaller than the non-re-chargeable battery. Also, a re-chargeable battery will last for
15 years. Given that I may live for
another 30 years, this was a consideration.
Things you may not be aware of - before the operation
The inserted neurostimulator/pulse generator/battery [known
in our house as the gonzo], will not sit flat under your skin. There will be a battery sized curve
visible. Mine is just below the collar bone. It’s not particularly noticeable. If I need, I put make up on the scar.
I have three small bumps on my head [under the skin] where
the wires are – now covered by hair. The
bald patch on the back of my head is not yet covered by hair – 3 months after.
Re-chargeable battery
Recharging can be frustrating. Finding the right spot is surprisingly, more
difficult than you would think. There is a large antenna to put over the
battery, but it doesn’t work in the same spot each time. It is possible for the battery to move!
When I finally saw the Medtronics representative, we took a photo of
what seemed to be the right position. It
was the right position for that day!
The antenna looks nothing like the neurologist’s demo model. It is all manageable but can be irritating
when you are not up to full health after the operation. I re-charge every two to four days. Sometimes I do it in the car – when not
driving. A bumpy road will change the
level of charge!
Has a great thought process when she needed a replacement
battery.
Medtronics wires/equipment has been chosen for its
reliability, but my thought is, the charger is built like a brick outhouse with
the same lack of finesse. The charger
doesn’t show the battery level, just a graphic.
So, if I want to be doubly sure I have re-charged enough, I
take the charger off and then put the remote control on. The charger comes with a harness which can be
useful if you want to re-charge while moving around. However, I was shown how to recharge with just the antenna
over my shoulder. This does mean you have a large amount of equipment and thick
books with languages for the whole world, to store.
If the Medtronic representative neglects to visit you in
hospital [happened to me], there are very useful YouTube videos:
Rechargeable Instructional
Video
Programmer Instructional Video
Ensure you have had the “right” MRI well before your
surgery. Did you know there was a wrong
one? I was told the day before I went
into hospital that the MRI I had done in March was not the right one. There was then a scramble to get it done. This time it was done on another machine with
contrast dye injected into my arm.
Hints
Cook and freeze as many meals as you can. We managed 24 meals and ate some beforehand!
If you wear ironed shirts, you may not be able to manage an
iron after the operation.
If single, it would be good to arrange some household help.
There are also several online shops. I bought a winter hat
in an op-shop. Because of the chest stitches I found it difficult to tie a
scarf around my head.
Men – find a hat or cap – you don’t want a sunburned scar.
For the surgery I was given a #1 haircut [and a small shave on
the back of my head] and hair grows at about 1cm per month. For me the scars and the bald patch did need
covering.
Let friends know this will not be an immediate, final fix
and you will need some free time for a while.
There will be some fine-tuning afterwards. The weekend before the operation, we sent
friends and family an email – giving the name of the operation [so they could
look it up] and asking for their support and prayers. Their prayers were very
comforting and I felt much calmer.
gh gh gh gh gh
After the surgery
Congratulations, you did it!
Things you might not be aware of – after the
operation
You will get tired easily, it was a big operation with a
considerable shock to your system.
You might feel quite lethargic [like go-to-bed lethargic] when
the program is changed. I have found my
body is getting used to the changes in settings.
My head was very tingly then I was told it may
be itchy. It was! It was sometimes difficult to find the right
position in bed with a sore head and sore chest.
A number of websites say – the patient walks out of hospital
pain free. Well, not quite. Over the counter medication is very good.
I have an Advanced Mode for my neurostimulator which means I
can change my settings within certain limits. At each visit to the neurologist I was given three to try So I devised a Word table with tremor, lethargy,
speech, walking and notes across the top.
Then decided I would rate everything [downwards] from 0. The exception was walking which started at -1
to show that my walking/balance wasn’t perfect before the operation.
The position of the wires can affect your balance and speech. It’s sometimes difficult for me to form words. I am up to my second three settings to try
and some affect my speech and balance more.
Your brain will learn to adjust.
In the meantime, I have a blue walking stick.
Hints
Your immune system will be lowered, affected by the surgery
– eat plenty of vegetables [frozen is just as good], and fruit
Don’t sleep flat – try three pillows to start so you don’t
get a headache
Try hanging washing on a clothes horse, putting the heavy
basket on a chair so you don’t bend over
Be careful with lifting supermarket bags
No pushing – skip the vacuuming, dusting may be too tiring
An iron might be too heavy – wear t-shirts
If you must pull that weed in the garden, be careful, you
might fall in
Do tasks a little bit at a time and take time to rest, ask
for help if you need
If you are not happy with how your neurostimulator programs
are going, phone your neurologist. I
did. I was given three settings to try
and an appointment for six weeks. All
three were unsatisfactory so I went earlier.
For me, the decision to have surgery was the right
decision. At the three month mark I
still have a way to go but life using a knife and fork is much easier.
It will take time – have courage. Think about what you have achieved so far.
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