The surreality of elective Brain Surgery

I am now less than a week from having my first surgery to implant the DBS.  The first surgery will be on Wednesday, August 7th.  I will be having the electrodes implanted on only my left side.  The reason for this is twofold.

1. It's considered safer and less stressful to the patient (me) to do one side at a time. This is according to both my neurologist and neurosurgeon.  They feel I'll have a faster recovery and will be able to get a great deal of benefit out of the one set on my left side, while minimizing the risk of complications.  They both know I work full time and need to be able to get back to work, so this came into part of the discussions.
2. Currently, most of my symptoms are on my right side (thus surgery on the left side of my brain).  While my left side is starting to see some symptoms (it is mostly gait related), the doctors feel that I will most benefit from the one side and hopefully have some crossover effect for anything on the left side of my body.

Nevertheless, both doctors said, if I need the other side to get electrodes placed, I'll be able to get it whether it is 6 months or 6 years from now.  

I had an MRI last week that took approximately an hour.  If you've ever had an MRI, you understand that it is best not to be claustrophobic (I'm not), able to stand still (I timed my meds for this) and basically relax and go with the flow.  I was very happy to have good music playing during most of the procedure (the tech forgot to restart the music after he injected me with the contrast material for the last 10 minutes).  My wife recently had an MRI and the tech automatically put in classical to "relax" her.  He obviously does not know my wife.  The tech at this facility asked me my musical taste and when Nirvana - Smells Like Teen Spirit came on as the first song, I knew I was in good hands.

Getting to the title of this post, it is weird to think that I'm basically sitting at work or at home with the family doing typical, everyday things and in about a week I'll be going in for brain surgery, by choice.  It's not something you ever think you'll do.  I always thought of surgery as something you do because you have to and while I feel this will greatly improve my quality of life, it is still a choice that I and my wife made by ourselves.  We had input from doctors, but the ultimate decision was my own.  I know even in heart surgery we make that decision (we've made that decision many times for many issues with my daughter); however, except for her surgeries to correct her cleft lip, it was never really a choice, it was have this procedure or she will die.  The lip surgery is so different because it is cosmetic, not the internal function of an organ, let alone the brain.  It's so unreal that I am doing this surgery, yet I can't wait.

A friend told me the other day that he can tell I'm ready for this, and I am.  My wife as well.  She basically told me she hates watching me suffer, which is correct on so many levels.  Watch videos of people with Parkinson's when their meds kick in or they turn on their DBS.  Without a doubt, there is typically a sigh when the symptoms are relieved.  That is because besides the obvious pain in the ass part of the tremors, dystonia, gait issues, etc. Parkinson's Disease is exhausting, even without the insomnia that most people with Parkinson's have.  When my meds go on in the morning about 45 minutes after I take them, it is one of the happiest points in my day.  It sounds sad, but the fact is, getting around with a severe tremor and gait issues is just exhausting.  There is such a relief that it is actually hard to describe.  The fact that I will have more on time with the DBS and will hopefully wake up in the morning on, without the need for the meds to kick in, is such a mind-numbingly awesome notion that I cannot wait for all the surgeries to be over and my programming session to start.

Speaking of programming, a little aside.  I have great friends.  Most of the guys I hang out with that are not from my Synagogue were hired on at my first company the same year I was hired in 1993.  We basically all came to San Diego together and made our lives here.  All but one is still at that company since I left in February, but we all got together for a barbeque the other day to catch up and let everyone know what's going on.  Like any good group of engineers, they were curious about the actual device that will be implanted.  I don't know a lot, but know it is programmable via a remote control device that you place next to your chest.  Needless to say, this got them going on whether they could hack the device, and start messing with my brain and setting up websites to "Control the guy with YOPD."  This is why I like my friends, they do not suffer from poor you, I'm so sorry.  If they did, I'd go nuts.  They want me to get better and use the full potential of this opportunity whatever it might be.  This is also how I know I made the right move to switch companies, because my boss asked whether I'd be able to hack the remote as well. 

Sprint TOS update and saving on my cell phone bill

I was finally able to cancel my phone without causing incurring the ETF that Sprint wanted to charge.  However,  they would not allow me to cancel my wife's phone for the same reason because she just got her phone last November (I got my phone in October 2011).  This means that I was able to transfer to my phone to ting.com and changed my wife's plan from a family plan to one of their new individual plans until it makes sense to cancel her's altogether.

I am ok with this for one reason.  Switching over to ting seems like a risk and switching my phone first, allows  me to test the service before we switch over both of ours.  The main issue is Sprint didn't charge for roaming data (since their network sucks, this is probably a necessity) and ting basically does not allow it.  However, after a week of using ting.com, I'm happy to say I haven't noticed much of an issue.  Roaming calls still go through and are free still, so that was my main concern.   My bill is tracked by the amount of usage I actually use so the less I use data, talk or text for a month, the lower my bill and I can also set alerts to tell me I'm approaching certain limits.  I'm figuring my usage will end up costing me about $31 - $42 per month + charges, which is much cheaper than we're paying for my wife's plan.

I'll keep you updated.

The Value of Customer Loyalty

Yesterday, I cancelled our service with DirecTV.  This is a letter I wrote to their CEO explaining why.  I doubt I'll get a response but you never know.

Mr. White,

I am writing to inform you that I have cancelled my service with DirecTV after being a loyal customer since March 2004.  The reason I am leaving is one of cost.  However, if it were not for the way DirecTV and many other cable and information/phone companies treat long-term loyal customers I probably would not even had considered leaving DirecTV.

I was paying approximately $105 per month to your company for service that included HDDvr on two TV's in my household, one of which was a 20" standard definition TV.  When I called your customer service line to cancel my service, all of a sudden discounts were available to me that would have reduced my bill by $35 per month.  However, I had researched the issue enough by then that I had found that purchasing Roku boxes for each of the TV's and adding one service would result in me saving approximately $95 per month.  

What was more disturbing is that if I were a new customer, I would have been offered the same service or more for a savings of $70 per month (see http://www.directv.com/DTVAPP/new_customer/base_packages.jsp for ultimate package which you are now offering to new customers for $34.99 per month).  If this had been offered to me when my last contract was up, there is no way I would even thought of leaving DirectTV.  Instead, I decided to pay an extremely questionable and excessive $340 early cancellation fee just to get out of my contract and will never be a DirectTV member again because of your exhorbitant fees.

I wonder if your executive team has ever done any research on the cost of gaining a new customer versus losing a long-term customer.  The fact that you've not had to pay for a single service technician to come to my house and/or done anything except collect my money for the past 8 years makes me doubt it.  The fact that your company and many like it choose to put new customers above long term loyal customers seems backwards.  When even insurance companies are realizing that long term loyal customers are better and are reducing fees/premiums for them every year, might make you think that your business strategies might benefit from some more analysis and insight.

Thank you

UPDATE:  Just talked to Sharon at DirecTV.  She researched and found that I received the new HDDVR because there was a technical difficulty with my old one and that was the reason I accepted the new HDDVR even though I was not even placing it on a TV with HD capabilities.  She said they will be refunding my $340.

Thanks to this post @snappyliving for giving me the information to call their office.

Sprint lawyers need to retake contract law

I was on the phone with Sprint for about an hour on Saturday.  I called to have my service terminated while they waved the Early Termination Fee (ETF) based upon a change in their Terms of Service (TOS) that I wrote about previously.

They actually had someone from the escalations department contact me.  I think she was a bit exasperated and sounded like she had been fielding these calls for most of the day.  Nevertheless,  I noted two interesting things during our conversation.

1. She did not even realize that this change was in the contract.  She nearly called me a liar for saying it was different because the only thing the Sprint Lawyers had evidently prepared them for was the WiMax issue.
2. She insisted it was not a change that was material or adverse because the Sprint attorney's had told her it was not.  Evidently, they have no bias.

She outright refused to waive the fee and actually said that I should hire an attorney if I wanted to.  Based upon comments I've been reading online, it seems Sprint is in lock down mode and does not care how many customers they piss off.

BTW, it's not as if my wife and I are fly-by-night customers as we've been with Sprint for about 8 years.  If they don't respond to me soon, my next move will be to contact the Better Business Bureau (BBB).

Sprint TOS change, Can my Contract be Voided?

I have Sprint cell phone service and have been waiting for my contract to be up in order to possibly change my service over to ting.com.  One interesting bit of legalese is that if Sprint materially changes their Terms of Service, you are allowed to get out of your contract without being charged an Early Termination Fee.

Well, they changed their TOS of July 1 and I noticed they added this bit:

Call time for a single call may be subject to a maximum duration and may be automatically terminated if the maximum duration is exceeded. Rates that vary based on the time of access will be determined based on the location of the network equipment providing service and not the location of your Device or your Device's area code (if applicable).

By adding this, they are allowing themselves to basically say a call that was an hour and spanned over a time period where rates are different (nights vs. days), can be split up over the two different time periods.  I would say, changing how my rates are possibly calculated is a material change and should be subject to allowing my to get out of my TOS.  What do you think?

DBS Approved!

I got word that I was approved by my insurance company and my DBS has been scheduled for early August.  I will update with information after I go through more of the process and have more information.

I'm figuring I won't show my surgeon this video until after everything is done and I'm cleared.

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:

Neuro-Psychologist:
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.

Neuro-Surgeon:

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.