Battery replacement time for DBS system

The initial installation of my DBS unit came with a non-rechargeable battery pack that was supposed to last 3-5 years. Unfortunately, the severity of my symptoms requires a higher complexity of programming and higher voltages both of which use more power resulting in the shorter life.  My battery signaled the need for replacement almost exactly at the two-year mark.  It was now decision time. Go with the same battery pack knowing that my symptoms will continue to get worse thereby draining the battery even faster. Or, go with a rechargeable battery but requiring me to make time to recharge the unit every day. My worry was whether I'd be disciplined enough to charge it every day. I think the answer to which one to get was clear.  With how quickly the initial battery drained and with the possibility of going through it even faster the next time, I decided on the rechargeable.  Additionally, there would be fewer battery replacement operations in my future since the rechargeable should last at least 10 years. Now I just had to persuade the surgeon. 
Fortunately, for me, it didn't take too much convincing.  When my neurosurgeon looked at the short life span of the original battery as well as my current and future electrical demands, he agreed that the rechargeable would be the correct choice.  He did jokingly say that if I go with the rechargeable unit, I wouldn't get to see him as much and that he would miss me. I blurted out "Don't worry, I would come visit you."  He smiled but a loud chuckle came from the nurse in the room.  She knew sarcasm when she heard it.

It's been over six months since I had the rechargeable installed and all-in-all its been a great choice. The daily recharge hasn't been an issue. I am up between 4-5 am everyday (thank you Mr. Parkinson's) and my mornings have become pretty standard: Let the cat out, make coffee, let the cat in, then sit and read for about 30-45 minutes.  It's during this time that I do the recharging.  With my current demand, 30 minutes is all I really need to maintain between 75% and 100% charged.  I've even missed a day and only dropped to 50% charge status.

The system I have is very nicely designed. Thank you to Medtronic for your engineering skills.  It's easy to use and does it's job quickly.  I simply place the recharging pad onto my skin directly over my battery and press go. The system checks the alignment and tells me how close I placed the pad to the optimum spot.  The closer you get to that sweet spot the better connection it has to the battery allowing more power to be transferred in the same amount of time. If anyone from Medtronic is reading this, it would be nice if the system told you which way to move the pad to get better alignment. The system comes with a strap so you can walk around while charging if you want.  I thought it made me look more like a crossing guard so if I do have to get up (probably to let the cat out again) I just hold the charger in place with one hand.  Oh, the recharging unit itself is portable since it is also a rechargeable battery that only needs to be recharged about once a month.  One other note that I didn't realize would be such a big benefit but actually is the best reason to get the rechargeable version.  The unit that is inserted into your body is thinner than the non-rechargeable one.  So the complaint I mentioned in a previous blog about always feeling it there when I moved around is almost completely gone.  I can lie on my side now with no tugging or it getting in the way.  Definite Bonus!

DBS - is there a negative?

In my last post I discussed how DBS surgery has helped me continue working and allowed  the use of my left hand again.  Nothing I am going to tell you here should leave you believing that I have any regrets of having the surgery.  On the contrary, it can be life changing but its not free, figuratively or otherwise.


The negatives:
1) The procedure - It is not painful however it is long. Once you are 'framed' into that chair you aren't moving for 5-6 hours.  There are plenty of people around you to help you get comfortable.  My back started to bother me and my legs got real jumpy by the end.  I think my body had enough.  Not a big fan of catheters either.  There was no pain when they implant the temporary posts to hold the frame to your head or when they were removed.  The hospital staff does a tremendous job of trying to keep you comfortable.  It's just that it is a long procedure and it does drain you. 

2) The battery implant - The battery pack is just plain annoying, even after nearly 2 years with it. Most of the time you don't really realize you have it but when you reach across your body for something, a little tug reminds you it's there. When you lay on your side it gets squished and uncomfortable.  It doesn't hurt you just know its there.  Bothersome is probably a better word. Also, it does wear out.  I haven't had to replace mine yet, I'm guessing by year three, but it does require another day-surgery when it comes time. I'm opting for the rechargeable one next.  I hope to get 10 years out of that one. 

3) The adjustments - It takes months to tune in the device as everyone's symptoms are different and there are hundreds of combinations of settings to go through to give you the best benefit. Even then, my symptoms aren't the same everyday or even the same throughout the day so, it's a bit of what's best in general.  My biggest problem with the adjustments is every time I have one scheduled, that day for some reason, I am at my absolute best. FRUSTRATING!  My neuro still manages to dial it in enough plus gives me enough adjustments in the remote to compensate for fluctuations.  

4) The cost - You need decent insurance for this surgery.  Typically its between $50-60k for the surgery then the follow-up visits are every 3 months for a while until it goes to twice per year.  Travel, time-off for surgery and appointments, plus the cost of the appointments themselves can get expensive.

5) The limitations - Its not a miracle cure for all that ails you.  In my case it works extremely well for the tremors and the slowness of movement I was having in my left hand.  Unfortunately, as you read in my previous blogs, there are over 80 symptoms that Parkinson's can cause.  Your Doctor will determine the best placement, probe and settings to control the worst of your symptoms but you will still have symptoms. Additionally, it doesn't slow the progression of the disease.  Its not meant to be thought of as a cure, more of a crutch.  What it can do it does very well but there are limitations.

6) The future - If you need it, you need it.  You can wait for the next best thing to come out (and it does and just did).  However, what they have out now works very well for the symptoms it can control.  Plus, its a proven surgery with thousands of success stories.  Don't let anything get in your way of being the best you can for as long as you can.

No one knows your future or how quickly you are going to progress.  In my case, I went from diagnosis to having the surgery in 5 years. I'm guessing that's because my Neuro called my disease "aggressive".  Yours will most definitely be different.  Listen to your Doctors, if you don't trust them find someone you do.  Even with the negatives I've listed, this surgery can give you back a part of your life you may have already thought you've given up. 

DBS after 2 years

It's hard to believe that it is coming up on two years since my implantation surgery.  Sounds weird saying it like that, "implantation surgery" and for you Star Trek fans, sounds very Borg-like.

So how has it been?  Initially, I would say very good.  I believe it is the sole reason I have been able to continue working at my job.  The initial tweaks removed the dystonia and painful cramping in my hand and eliminated my tremors.  DBS does those things very well.  However, as my symptoms fluctuate and constantly progress the system is having a harder time compensating or keeping up, as it were.  Each probe has so many adjustments that the tweaking could be endless, but, that's a good thing.  More, finer adjustments means longer adjustment appointments, however it gives the neurologist the ability to find the 'sweet-spot" with less side effects. My problem with the programming adjustments is that for some reason, I am always at my best when I see the Neurologist.  She makes these adjustments and asks how I feel.  "Great" always seems to be the answer but then I came in feeling great too. Just once I like to be seen at my worst - "There, adjust me now!"
One of the drawbacks to the surgery is the area they need to simulate is very near other important areas in the brain.  Not much room in there.  If my settings get adjusted too high, I get what can best be described as "leakage" into a nearby area.  In my case leakage into the area controlling facial muscles. This causes a noticeable slur of my words which when I'm "on" is fine and hardly noticeable.  But, when I'm sliding down to "off- state"  I am very difficult to understand and frankly get so frustrated I just make it worse. My Parkinson's symptoms tend to fluctuate day-to-day as well as throughout the day.  So expecting a device that sends out a distinct and constant pulse to keep up with all the changes is not something I would expect it to be able to do.  But, that said, when my meds are working, the DBS unit does a remarkable job.

So the big question remains "was it worth it?"  Absolutely.  The main reason I had the surgery was an almost useless left hand.  The tremor control was a bonus.  In some ways, now that my symptoms have progressed to both sides of my body, my left hand is more useful than my right.  I will have to work on that with at my next adjustment appointment.  
Next up:  Some of the negatives of the Surgery

DBS - The Main event Part 2

Two weeks after the initial probe placement I was scheduled for the generator, a.k.a. stimulator, a.k.a. battery pack installation.  This surgery is out-patient and the whole operation is supposed to last less than an hour.  It sounds quick and easy but you still end up spending most of the day at the hospital.

Arrival: 10:45 am, admin check in - same as previous surgery although I'm on meds and got a better nights sleep.  After a few minutes I am brought back to pre-surgical for gowning and IV installation.  

Pre-Op:  Still just as crazy as last time.  "Hmm, I wonder what that guy is in here for?" Could be anything as I listen to conversations all around me.  Same process as last surgery, nurse visit, then Anesthesiologist, Surgeon, intern, Anesthesiologist's intern then up to surgery.  This time, however, they inject you with, well..., lets just call it happy juice.  
Surgery:  At some point on my way to the operating room, I was out because I have no recollection of even getting there.  I especially do not remember stating to a group of nurses in the hall, "hey look, there's a gaggle of nurses".  A statement only my youngest daughter would find funny as I have been calling groups of anything 'gaggles'. Did you know that a group of:

Bats are a Cloud - as in, "Look at that cloud of Bats!" 

Butterflies are a flutter

Crabs are a cast

Crows are a murder

etc..

I think it's insane that there are all these different names so I call a group of anything a gaggle.  See, I told you only my youngest would find it funny.

Post-Op:  I wake up and my throats sore - ventilator tube used during surgery, ugh.  I have a newly shaved spot on the side of my head where they connected the leads from my probes to the leads from the battery pack.  Oh, and of course I have this bulge over my left collarbone. Its now 3pm, "where did the day go!"  

The battery pack.  I'm told that after a month your mind gets used to having something foreign installed.  I hope so because it is only the first week and the pack is already bugging me. It doesn't hurt but when you move certain ways you know it's there. If I'm going to carry this battery around with me, the very least they could have done is given me a USB port so I could charge my phone. 

I've been wearing a hat to hide the incisions on top of my head as the hair grows back. I'm not embarrassed, its just I don't want to gross people out when they look at me.  Plus, I'd rather not get into a big discussion about what is going on every time I bump into somebody I know.  The problem is the new incision on the side of my head is right where the hat lays.  What a pain, literally and figuratively.  

Unlike the first operation, there was no boost from the insertion of the battery pack.  I heal for a couple weeks then I get my first of many programmings.   After nearly two weeks there are still some tender spots, especially where the leads run under my scalp.  Bruising and swelling around the pack is almost gone.  Stitches on the side of my head are ready to come out.  So lets fire this baby up and see what she can do.

Next:  In deference to the late great Gene Wilder, "Alive, It's live, It's alive!"

DBS - The Main event

OK. all hoops jumped through, I's dotted and T's crossed.  I was good-to-go for surgery.  I had to arrive at the hospital by 5:30am after not taking any medications the night before.  As some of you will remember from my previous posts, I don't sleep well without meds.  As expected I was up all night, so it's off I go to have brain surgery on zero sleep.
This may sound trite after the fact but I was surprised by how NICE everyone was at the hospital.  From the person that checked me in, to all the nurses (I think at last count, I was introduced to about 40 by the time I left). I've been to three different hospitals in the past two years and without a doubt, the people at Strong URMC are the best at what they do.  No comparison.  So best as I can remember here is the blow by blow.
5:40am - checked in with hospital administrator - normal questions, insurance, etc.  Then they explained to my wife how I will be assigned  a number that she could use to track me on monitors in the waiting rooms as I went through various stages.
Pre-surgical - this is where you change into your gown and the first of the 175 vitals are taken from you that day.  Also where you get the attractive bracelet used to keep track of every med they give you going forward.
From here I was brought into an area that can best be described as a symphony in chaos. Pre/Post Op.  People, surgeons, anesthesiologists, interns, nurses, patients, family are moving all over this room.  The good news was my family could be with me up until this point.  Here you meet all the people that will have a hand in your surgery that day.  Finally, the neurosurgeon walks in, looks at me says "Are you ready?"  After a quick thumbs up, it's a tearful goodbye to my wife then up to the operating room.
Operating room.  I guess you could say it was exactly as you would picture it would be for brain surgery.  Equipment everywhere.  And the people!  I lost track but there were nearly 20 people floating in and out of that room.   First up, the part I was dreading the most:  The catheter. I don't know why I stressed over this one tiny piece of the operation more than any other, but I did.  Then I got some good news.  After a numbing agent was applied (yes that was weird) I would be temporarily put out so they could do the catheter and attach the headgear. I guess I was out about 10 minutes and now I was being whisked over to a CAT scan so they could do a final map and overlay it with the MRI.  
The prelims were now over.  I was back in the operating room and here is where the meat of the operation was going to take place.  They moved me onto a narrow but surprisingly comfortable molded chair and my head gear was fastened down.  As many monitors were attached to me as my available open skin space would allow.  A quick shave of the head area and it was time for some Lanicane on my scalp.
"Ouch," I shouted out as the surgeon cut into my head with the scalpel. "you felt that?" was his response  "Yes!" I said emphatically.  After more Lanacane was administered they finally got to work. It was a weird feeling, knowing they were doing something up there but not being able to feel it.  At one point I heard something that sounded like the Doctors were scraping on the metal bars surrounding my head.  I asked the nurse what they were doing and the Surgeon piped up that they were removing some tissue covering my skull.  It was almost surreal.  Here they were, scrapping directly on my skull.  I couldn't directly feel it, but the sensation I had was like it wasn't attached to me.  
Drill time.  They prepared me for the drilling explaining exactly what will happen.  Loud noise followed by a loud click as the clutch engaged and voila, you have a new hole in your head.  The first one took about eight seconds and was exactly as described.  The second one was much quicker but didn't sound right.  The drill must not have done as good a job this time as I could feel the surgeon doing some clean-up with some nippers. No pain mind you, I just could feel it.
Probes.  They inserted the probes and then it was the neurologists time to shine.  Her job was to make sure they got the probes in the correct place.  A lot of it was done with sound which is cool as they listen to your neurons fire as they move your limbs. The last bit was a little strange, though.  They purposely go too far to make sure the probes are where they think they are.  This puts them into the part of the brain that works with the eyes.  The neurologist tells me to look for sparkles or lights and tell her where they are in my field of view. Not sure what this does for them but they seemed pleased with my responses., They temporarily applied voltage to the probes and it was amazing!.  My arm completely relaxed which it hasn't done in five years.  I could make a fist again and there were no tremors.  Now, this is what I had been waiting to see.  I got to keep most of that freedom even after they turned it off because of something to do with the trauma of the surgery creating some sort of temporary improvement. It lasted about three full days and was wonderful!
Closure.  With probe placement now complete, it's time to button me up.  Picture a staple gun attaching a small titanium disc to your head.  That's what it sounded like.  Again, there was no pain just this weird sensation of them attaching something to my me. Shortly after that it as back to where I started in Pre/post op.  I was exhausted and dozed off for a couple hours.  I know my family was anxious to see me but there was nothing that could keep me awake at this point.  I woke up around 3pm and had the family come in along with four ice cream cups!  My reward for making it all the way through.
I found out later that after each step of the process a nurse would call my family and update them on how I was doing.  Again, I would like to compliment the staff at Strong URMC for their wonderful care.
You get one night in the hospital so they can monitor you.  Then after a quick check by the surgeons, you're out the next morning.
Recovery.  Apparently, exposing the brain to the air can cause some of it to be trapped inside your head when they close you up again.  This gives you the feeling of having a sinus infection.  Your head pounds a little when you bend over and you feel a little dizzy...  This took me about 5 days to get over.  After that, the most annoying thing was how much the stitches itched as the wounds healed.  My scalp was a little sore too, where they tucked the wires awaiting attachment to the stimulator in the next Operation.
Speaking of which, on to the next post
Battery Stimulator placement.

DBS - Steps three and four

Steps three and four, to me, are the most interesting of the hurdles you need to clear before gaining admittance to club DBS.  Step three is a full psychological examination and step four is a meeting with the Neurosurgeon.

Step 3
Entering into the room with the Neuropsychologist (No, I didn't know one existed either) she asked, "do you know why you are here?"  I jokingly answered ' to make sure I have no plans to kill myself"  "Well, kind of" was her response.  "Kind of?" I thought "But, I was only joking..."  It sobered me up to how serious these evaluations were.  The group of specialists the University of Rochester had put together was there to make sure I was a good candidate. I initially thought it was purely to make sure their 'successful surgery' numbers better by weeding out candidates that would not show a strong improvement from the surgery.  I was surprised to find out it was much more.  They were genuinely concerned about how the surgery would affect me.  They wanted to make sure I had the best outcome possible.
By participating in Michael J Fox's PPMI study for the last five years I have been privy to many of the psychological tests I was about to be given.  While the tests were familiar I still thought I did worse than the last time I took them.  There were more than just memory tests, though.  Discussions on growing up, my siblings, parents, and relationships all were fair game.  We touched on a lot of subjects.  I must have answered most of the questions to her satisfaction because, in the end, she said she would recommend me for the surgery.  So, I was off to the next and final step.
Step 4
The meeting with the neurosurgeon was about two weeks later.  He was exactly as you would think a brain surgeon would be. Tall, witty, and just a little bit cocky.  He exuded confidence which, personally, I think you would want from a guy about to get an up-close look at your brain.  He patiently answered every question my wife and I had.  We asked about problems he has encountered with previous surgeries, what they do to reduce the possibility of infection and stroke, new emerging techniques and are they worthwhile waiting for, which unit he would be implanting, and an hour-by-hour breakdown of the surgery day.  He even commented that as a patient I was required to bring a joke to the operating room.   Over the next several days I thought about looking one up on Google.  I mean, there must be Neurosurgeon jokes out there somewhere, right?  Then one occurred to me.  "What is the difference between a Neurosurgeon and a Proctologist", I will ask the Doctor after getting wheeled into position. Hopefully, his answer will be "I don't know" at which time I will shout "hold it, stop the operation!"
He approved the surgery to move forward and now the dreaded wait begins for the scheduling person to call. It's obvious (and I guess good) that these people are in no hurry.  If they were in a rush there probably is something majorly wrong with you and they want to get in fast.  As excruciating as it is I will wait patiently to find out my drill date.

This whole process, from initial thoughts of having the surgery in March to the actual day of the surgery in August, has taken five months!  I'm not sure if that is typical but from what I gather reading others comments it's not far off.

Well, as I finish writing this, its T-4 days until the big event.....
"See you on the other side, Ray"

DBS - Step Two in the approval process

After making it through the initial qualification for Deep Brain Stimulation (DBS - see my last post), I prepared for step two, evaluation without and with medication.  Sounds easy enough, no meds for 12 hours previous to the exam then get to the Doctor's office and get evaluated.  Unfortunately, I forgot a couple of things.

1) I haven't been completely off medications for a while so I forgot how difficult simple tasks can be
2) Since this is a progressive disease I really had no idea how bad I would be.

I did think ahead a little bit though and got a hotel near the Doctor's office so I wouldn't have to make the 2-hour trip while unmedicated.  As it turned out, that would be the least of my problems.
About an hour past my reminder to take my next dose of meds I started tightening up.  My left foot was dragging and my face felt like it weighed 10 pounds.  I could tell my speech was starting to struggle so I reviewed my exercises from my last therapy appointment to avoid any awkward moments checking in to the hotel.
I made it to my room and as I lay there watching the Yankees get beat up on TV (again) things started happening fast.  I was getting weird spasms in my arms and legs.  My restless leg was now in high gear and my movements had slowed to a crawl.  Then the aches started and I knew it was going to be a long night.  Just how long, I was unprepared for because no matter what I did, positions I tried, or place I attempted to lie (bed, chair, floor) I couldn't sleep.  It would be a long night.  Lucky for me there was some good TV to watch (thank you Fraiser and the movie Monuments Men).  This got me through to morning as my night went from lying down to sitting up to pacing and back to lying down as I tried desperately to get comfortable.  I thought to myself "Well, the Docs going to get me at my worst for sure.  I took a shower and headed out for some coffee hoping it would work its miracle and keep me awake through the testing.
If you've ever taken your car in for service you have probably experienced this.  The car is making a strange noise.  Ever time you do 'this' with the car it makes the same noise so you take it to a mechanic.  He gets in the car and like magic, there is no noise.  Well, after the coffee and moving around outside for about an hour that's how I felt going into this appointment unmedicated.  As bad as my symptoms were the night before they were much calmer by the time I got to the appointment.  The Parkinson's was still there but, not in the nearly institutionalized, spasmatic version they appeared to have me in the night before.  "That's common," Dr. Burack (my new neuro for DBS) told me. Apparently, the withdrawal from both Amantidine and Sinemet can cause the pain and spasms I encountered.  I didn't like the thought of being 'hooked' on a drug but at this point I have little choice.  Hopefully the DBS surgery can reduce my need for some of the 18 pills per day I am now taking.  
The exam was typical of every other neurological exam for Parkinson's except you get to do it twice.  Once off meds and again after your meds have kicked in.  Since it takes my body almost 45 minutes to an hour for the medications to work their magic it gave me the opportunity to  ask a lot of questions about latest techniques, probe placement, what the day of surgery is like, etc.  I will share these in an upcoming post.  
On to Step 3

Deep Brain stimulation - DBS from the patient perspective

It astounds me how the progression of an idea works. I mentioned this in an earlier post but I think it's worth noting again.  Somebody at some point looked at a calf getting milk from its mother and thought, "hmmm, I wonder if we could drink that."  The same applies to other things like coffee and chocolate - "Let's do these 19 steps to this bean and we might have something good in the end."  The discovery of something new and the progression of how it got to that point intrigues me.  Somewhere along the line, someone witnessed what happens when an electrical charge is given to the brain. They applied that information to invent a procedure that today has been performed over 250,000 times.  Amazing.
There are plenty of sites that describe what Deep Brain Stimulation (DBS) is and how to take one for a test-drive.  I thought I would do something a little different and tell you about it from the perspective of someone going through it.  Namely...me.

How the thought of DBS even got in the discussion.
I always thought DBS was in my future.  I figured by the 10-year mark of my diagnosis my symptoms would progress enough and the technology would advance enough for me to have the surgery.  Well, here I sit at the 5-year mark contemplating DBS pros and cons.  In my last PPMI visit with my neurologist, Dr. Richard, and her assistant Paul DeRitis at the Univerisity of Rochester, we discussed the dystonia (distortion) and bradykinesia (slowness) still hindering my left hand.  On medication, my hand will open and close albeit VERY slowly making it difficult if not impossible to use.  Fine motor skills like picking up screws or nails to work around the house cannot be done.  Off meds, my hand curls closed like a hook and is useless. Our discussion centered around my medication regime and if there was anything else that could be adjusted.  I'm maxed out on Carbidopa/Levodopa as any more and I start to get the rolling wave of dyskinesis starting with my head and working its way down to my torso.  Nothing on the scale of Michael J Fox but dyskinesis none the less. Other Parkinson's meds are a no-go due to the side effects associated with impulsivity.  So Botox was mentioned.  The premise here is there are two muscles involved in most movements.  One pulling and one relaxing - think bicep verses triceps.  The thought is to inject Botox into the muscle of my hand to relax it so it won't form my hand into a hook. A couple of problems with this procedure: One - it only lasts a few months and you have to get reinjected.  Two, it weakens the muscle.  I'm already struggling opening things like Ziploc and Potato chip bags.  If this makes it worse I'll really be in trouble. I wasn't getting a good feeling about this procedure so I asked what else we could do. This is where they suggested I consider DBS surgery.

DBS appointment - Step one
With the anticipation of going down the DBS route, I get to add another neurologist and now a neurosurgeon to my repertoire of medical professionals. Dr. Richard and Paul are phenomenal and if you're near upstate NY I highly recommend you seek them out.  However, now I get to deal with another highly regarded movement disorder specialist, Dr. Burack also of the University of Rochester.   The new neurologist works in tandem with the neurosurgeon to perform the DBS surgery. While the surgeon is doing the cutting and insertion of the electrodes, the neurologist is directing the precise location and final placement.  I'm getting ahead of myself though.  Step one is to meet with the new neurologist to see if you qualify for surgery.  Apparently, to qualify for DBS you have to meet certain criteria.  

This is a suggested list, not a hard and fast rule.  Some places have their own criteria or worksheets to determine if you qualify.  The University of Florida has a multi-part form that is graded to see your probability of being a good patient. (here)  I can understand why they require you to be physically ready for the surgery, but I was not expecting all the questions on the mental readiness part.  Number 7 (above) Realistic expectations?  Would the surgery not work as well if I expected it to do more for me?  Number 8 - adequate social support- why?  To keep me from getting depressed if it doesn't work as well as expected?  There may be some side effects of this operation that I need to dig into more. 
 So after a couple hours of questions and a brief exam the neurologist determined that I qualify to move on. Step one, check, but I'll have to go back and ask her how realistic my expectations were.

Next up - Step Two - an MRI and examnation off medication.