Monday, June 24, 2013

Prerequisites to DBS

Continuing my previous post, I'm going to describe the four people that needed to approve me for DBS surgery before the request for authorization was made to my insurance company.  These four doctors were my neurologist (actually she is a Movement Disorders Specialist), the neurosurgeon who would perform the surgery, a neuro-psychologist and a speech therapist.  Going in reverse order:

The other major side effect of DBS is cognitive issues.  This is what scares me the most about DBS.  Let's face it, I am the sole bread winner in my family.  My wife is a stay-at-home mom and we have two kids under the age of 10.  I am a full-time software engineer and need to be able to continuing working at my current level.  The psychologist put me through a series of memory, logic, spatial relationship, learning and comprehension testing.  It was basically an exhausting two and a half hours of almost non-stop questions and responses.  The psychologist was also incredibly patient and understanding when my meds began to wear off near the 2 hour mark as well as kind enough to explain the purpose of some of the tests (my wife is a therapist and some of her friends are psychologists, so they had some professional curiosity as to the tests and asked me to report back).  Some of the tests included asking me to form shapes of blocks to match a a picture, memorize a word list and repeat it back, identify pictures of everyday and not-so everyday objects, learn and indicate if an image was new or previously shown and do simple calculations in my head.

Speech Therapist:
One of the possible side effects of DBS is related to speech.  The speech center in the brain is located near where the probes are inserted so the doctors wanted me to see a speech therapist to both assess my current level of speech as well as set a baseline.  Also, since soft talking and slurring are symptoms of Parkinson's it was a good opportunity to measure my current state.  As I'm often asked to repeat myself because, this is also an issue with my diagnosis and symptom I have, although not a major issue at the moment.  During my assessment, the speech therapist set me through a series of tests to both measure my volume, range and ability to enunciate.  She had me, in a loud voice, make a constant mid-level sound, and make an increasingly higher and lower pitch sound as well.  She then had me read from a document so she could listen closely to my dictation.  The main issue I had was the not so surprising average decibel level while reading the document.  She said that I spoke about 7 dB lower than normal.  Since decibels are measured using a logarithmic scale, this actually means I spoke much softer than normal, about 1/4 the volume of what a typical speaker would have.  However, I actually had a range of about 2 octaves.    The testing went pretty quickly and she also mentioned therapies that are available to people with Parkinson's if interested and you're having issues with people constantly asking you to repeat yourself.

This was the first person I met with other than my neurologist. Besides describing the surgery, he wanted to basically size me up, for lack of a better term.  His purpose was to determine if in his opinion, it was even worth me going to see the two therapists described above based upon my current cognitive abilities.  Also, he wanted to judge how medications worked in me, as one's reaction to Levadopa is considered a good indicator that the surgery would be a success.  The better Levadopa assists your day-to-day functionality, the better your surgery should also assist in alleviating your symptoms.  The last thing the doctor wanted to ensure was that I understood the risks involved and what the possible negative outcomes could be.

Movement Disorder Specialist (MDS):
This is the neurologist I have been seeing for the past 9 years.  She diagnosed me and has been treating my symptoms for that entire time.  She also got me into the original Azilect study as well as the follow-up study to assess Azilect's effect as a neuro-protector.  That one study, probably saved me over $5000 in drug co-pays over the five years I was in the drug studies (July 2006-August 2011).  She has been recommending I look at DBS for a couple years now, as  my medication intake has increased both steadily and dramatically.  She has been saying for a while now, that she believes I am a good candidate and that I'll appreciate the effect it will have on my life.

My MDS called me late last week that her team had approved me and also thought I'd make a good candidate for DBS.  They are currently putting the paper work together to get insurance approval for the procedure.  Once that is done, they will schedule surgery.

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