Jason's MCS Story!!!!!
I am
pleased to offer visitors of www.opuslinks.com
a Motor Cortex Stimulation, (MCS) story and picture after MCS surgery in
December 2005. PLEASE NOTE THAT THE PICTURE AFTER MCS SURGERY BELOW IS GRAPHIC
AND CAUTION IS ADVISED WHEN VIEWING THIS PICTURE. SEE DISCLAIMER.
Also note that different procedures and different doctors use different surgical
and programming methods. Some incisions are large and some are smaller in size
depending on the area of pain coverage and testing needed through the motor
cortex of the brain to reach painful areas. According to Dr. Jaimie Henderson at
Stanford Hospital in California, there is currently only about a 50% success
rate for MCS for neuropathic facial pain (TGN). There is an approximately 30% to
50% success rate for post-stroke, central pain. Percentages vary by
neurosurgeons, hospitals and Countries. Please ask your neurosurgeon for actual
success rates.
This story is from a Jason, 32-year-old male from Sydney, Australia. This young man had MCS surgery in December 2005, for right-sided facial pain that includes all branches of the Trigeminal nerve and pain in the teeth and gums. I wish Jason the best possible outcome from MCS and a future that is as free of pain as possible. I hope this story will help many people and provide guidance to individuals experiencing facial pain within the United States and overseas. If you have questions for Jason or would like to offer Jason assistance with support or finding another programmer in Sydney, Australia, please e-mail Bridget Kelly at support@opuslinks.com BKelly 06/03/06
Story submitted Saturday,
June 3, 2006. Bridget Kelly edited this story a little at the request of Jason.
Jason’s MCS Story December 2005
I thought my story might
be of interest for you, whilst I ask yourself for a little guidance if possible.
My TN (Trigeminal
Neuralgia) and ATN (Atypical Trigeminal Neuralgia), experiences started in 2000.
In December 2003, I underwent an MVD (Microvascular Decompression), for a
compression of the Trigeminal Nerve. The MVD was successful for a period of 7
weeks, until the attacks returned without warning.
In July 2004, I underwent a second MVD as a nerve had re grown and was
compressing the Trigeminal nerve. This surgery was also a success whilst I
stayed a little numb, but the pain returned in a matter of weeks.
In December 2004, I had a glycerol injection. This procedure was a disaster for
me. The procedure left me with a very painful and stinging eye.
In July 2005, I had a balloon compression, which made some parts better, i.e.
V3. This procedure did not help for V1 and V2. V1, V2, V3 are the three
distributions of the Trigeminal Nerve on each side of the face. (See links
section or other recommended Trigeminal pain websites for pictures of the head,
brain and area of the Trigeminal nerve).
I feel these destructive
procedures like balloon/injection were a big mistake for myself. The procedures
just added further complexities to my pain.
Finally, I underwent the first Motor Cortex Stimulation (MCS), in Australia on
December 15, 2005. On most days I am in 75% to 90% less pain than I have been
for 5 to 6 years. I must not forget to mention that I have not had a typical TN
attack in over 6 weeks. These typical TN attacks have previously plagued me in a
continual, all day pattern for many years. I can say that I still do get days of
excessive ATN. I am still in the process of tapering down my meds but the snap
shot today looks like:
Before MCS medications:
Keppra 500mgs 2 x daily
Lyrica 300mgs 3 x daily
25mgs Allegron 1 x daily
Today:
Lyrica 150mgs 2 x daily
The complexity for me is that there are no experienced programmers of sorts in
Australia that I can find. I have a great neurosurgeon. My neurosurgeon has
helped me for many years. He is the leading surgeon for trigeminal pain in
Australia and performs many MVD’s a week. He was eager to get me relief
through MCS for quite some time. My neurosurgeon never gave up on me and got me
to MCS and beyond.
Now, I feel I am almost in a self-help stage where I am struggling to work out what is not enough stimulation, what is too much stimulation and what is just break through pain. For now, I work with a representative from Medtronic in Sydney, Australia at Westmead Private Hospital, for programming.
(Some individuals work with manufacturer
representatives; like Medtronic,
for programming. Others work with neurosurgeons, nurse practitioners or other
medical professionals for programming pacemakers. Please consult with trained
medical professionals on particular methods).
In Australia, the programming has consisted of very short half hour sessions
where I am asked, how does that feel now? This question can be very difficult to
respond to, given any different setting. The time in the programming trial is
very short. In truth, to date, I have needed the stimulator on for a few hours
before my pain is significantly reduced. I typically respond best to 6Volts with
a pulse width of 150 and a pulse rate of 120. My rate is always between 120-
130, ... this was used for 2 reasons.. The first is that the stimulation feels
like my skin is crawling when it is lower and smoothes out when it is higher and
the second is that the smoother the rate, i.e. higher ... causes less chance of
seizure... I am not sure how true that is but comes from a neurologist who spent
5 years in the US and is a specialist in seizures in Australia..
That said, I just may turn the rate down as the high rate may be smoother but it
is my thought that it may cause a little burning by the end of each day also..
I use this setting from the minute I wake up until I lay to sleep. If I turn the machine off I do not get continued relief, not even 5 minutes passes before the severe burning and sharp typical TN starts. I do turn the stimulation off at night because I do not need it to sleep. I find that stimulation makes me a little tired and I am not sure my recall (memory) is as sharp when the stimulation is on... is that normal?
(Jason can adjust his stimulation somewhat by advancing or decreasing the settings with his Medtronic remote control. Jason places the remote control over the area on the outside of body where the pacemaker is implanted. Once the program settings or parameters are tested by the Medtronic representative and saved to the internal power source/pacemaker, Jason can turn the settings up or down, on or off, by pushing the control buttons on the remote control). BKelly
I have had one seizure during adjustment. This seizure was very scary for my wife especially. The seizure occurred at quite a large setting. Now, I can still adjust the settings with my hand-held remote control. I know where the limits are. I am a bit cautious to adjust.
The
seizure I had was at 8V, 130pr and the big problem was the 360pw which went out
beyond the motor Cortex range.. In the seizure I had, I didn't lose
consciousness and just had a clenched face and shaking head, although it was
very frightening... One good thing was I was then 100% pain free for a good
24hours... don't know if that is normal.
We are moving into winter
in Australia. Winter takes a toll and I experience more breakthrough pain by the
end of every day, although the break thru pain is far better than it has been
for years.
I hope to try some different programming and programming methods very soon to
achieve optimal pain relief.
I will add my neurosurgeon’s contact information once I get permission.
THANKS JASON!
Picture of Jason's incision on the left side of the head after MCS surgery in 2005. Remember that the right-side of the brain controls the left side of the brain and the left side of the brain controls the right side of the brain. See: A Science Odyssey: Probe the Brain. (1998). Retrieved May 5, 2004: http://www.pbs.org/wgbh/aso/tryit/brain/mapcortex.html ,for more information on the motor cortex. Picture submitted with permission from Jason 06/02/06
