By Valerie Graham
Copyright © 2013
When I had my first DBS surgery on August 30, 2002, little did I realize that I would become a contender for the title of "Person Who Had The Most DBS Surgeries." But, if I am correct, I suspect that I may indeed hold that title, a dubious honor to be sure, and certainly not something I set out to achieve!
In addition, I believe that I may also be one of an elite group of people, if not the only person, to have sampled virtually the entire smorgasbord of Medtronic batteries manufactured to date. This experience has made me somewhat of a connoisseur of these comparatively rare batteries, to say the least.
In an effort to educate prospective patients, I have decided to share my personal opinion regarding the perceived pros and cons of each of these batteries in the hope that it will enable patients to make a more informed choice as to which battery to have implanted or,assuming this decision is made by the DBS medical team rather than the patient himself, better educate patients so that they will be able to engage in a more intelligent discussion of this issue with their respective medical teams.
October 18, 2002 - the Dual Soletra Batteries
When I initially underwent Deep Brain Stimulation (DBS) surgery for Parkinson's disease, I was implanted with the dual Soletra batteries. These were separately connected to the electrodes implanted on each side of my brain.
Advantages of of the Dual Soletra Batteries:
Despite DBS surgical complications (my left electrode was not placed in the optimal spot and I ultimately had to have it re-implanted in February, 2003, coupled with the fact that, due to a broken extension lead on the right side, the entire right side electronics had to be replaced in yet another separate surgery in April, 2004), my batteries persisted. My Soletra IPGs lasted approximately 6 years before they had to be replaced in September, 2008. This was longer than the average length of time of 3-5 years that is more typical for battery replacement.
Disadvantages of the Dual Soletra Batteries:
My biggest objection to the old Soletra IPGs was that programming changes or adjustments could only be made by the neurologist or his programmer. Consequently, being difficult to program, I became psychologically dependent and was accustomed to having ready access to my neurologist or the programmer if I needed an adjustment.
September 29, 2008 - Single Kinetra Battery
By late September, 2008, it was time to replace my dual Soletra batteries. The neurosurgeon, at my request, agreed to replace them with the single Medtronic Kinetra battery. This required extensive rewiring of the extension leads implanted under my scalp because both electrodes implanted in my brain now needed to be connected to the single Kinetra battery.
Advantages of Single Kinetra Battery:
The most significant advantage of having a single battery rather than two implanted in my chest was that I was given the ability to make adjustments to the neurostimulator settings, within certain prescribed parameters. I found this added ability to control changes to the neurostimulation of my Kinetra battery immensely freeing.
Disadvantages of Single Kinetra Battery:
The surgery to implant the Kinetra battery and rewire the extension leads proved to be much more involved and complicated due to the extensive scar tissue that had built up around the original Soletra extension leads.
This battery only lasted approximately 15 months before I needed a replacement.
March 5, 2010 - Activa Rechargeable (RC) Battery
Due to the comparatively short period of time before I had exhausted the Kinetra battery, a determination was made by my DBS medical team that I should be implanted with the relatively new Medtronic Activa Rechargeable (RC) battery.
Advantages of the Activa RC Battery:
In theory, this battery is supposed to last a minimum of 9 years before requiring replacement.
It is a much more compact size (i.e., 2.1 in. high x 2.1 long x 0.4 in. thick, with a weight of 1.4 oz., compared to the Kinetra battery's dimensions which are 2.4 in. high x 3 in. long x 0.6 in. thick, with a weight of 2.9 oz.).
It offered the option for finer control of the stimulation field by configuring multiple programs per lead, and for achieving optimal settings sooner by defining 4 therapy groups.
Disadvantages of the Activa RC Battery:
The charge on my battery typically read 50% or less when I performed my daily check of the charge, causing me to need to recharge the battery every 2-3 days. I talked to one of the Medtronic reps while attending an APDA conference in Iowa, and he voiced his concern that because this particular IPG was a lithium battery, in theory, it should require even more frequent recharging as it ages, a fact, that, if true, I quickly realized could prove to be unduly burdensome.
It took 2-3 hours, for me to recharge the battery to 100% once it was down to 50%. However, if I recharged the IPG in several small sessions, rather than one extended session, it seemed to recharge more easily and quickly.
It was often extremely difficult to locate the best spot on my chest directly above the IPG where I was able to get the most optimal charge to the battery from the recharger (eight blackened bars signifying the most optimal charge, with the fewer boxes which were blackened on the recharger screen, the longer it took to recharge the battery). This problem was ameliorated when I was provided by Medtronic with a supply of small round sticky discs, which after removing the paper covering and attaching it to the skin directly above my implanted battery, greatly improved my ability to locate the spot where I was likely to obtain the most optimal charge.
The harness that was provided with the Activa RC battery was useless in attempting to recharge the battery. It was virtually impossible to get a tight and precise enough fit to get the most optimal charge to the battery. Instead, I found that what worked best for me was to place the recharger directly on top of the skin covering the IPG and to lie perfectly still until the battery was fully recharged.
Furthermore, while recharging, the recharger itself often became so warm during the recharging process that it was uncomfortable against my skin. I found this to be particularly true after the battery implant surgery when the scar was fresh. And, although it was my understanding that the recharger automatically shut off when it reached a certain designated temperature, I found that this only served to lengthen the time required to fully recharge the battery.
While it may have simply been my imagination, I also noticed that I began to get extremely fidgety or restless when I was recharging for any length of time. It was almost as if my skin felt prickly, making it that much more difficult to sit still so that I could get the maximum efficient charge to the battery.
It was extremely frustrating that the digital readout on the patient programmer only measured the amount of battery life remaining in quartiles, i.e., 25%, 50%, 75%, and 100%, rather than to the closest single percentile.
All in all, given the amount and degree of daily maintenance that the Activa RC IPG required, I became firmly convinced that I would not opt for re-implantation of this battery over the Activa PC, if I were given the opportunity to make the decision myself. Ultimately, for me, the amount of maintenance that the Activa RC battery required served only as a constant psychological reminder that I was not nearly as "well" as I would like to think. Given how active I had become following my DBS surgeries, this only served to reinforce the notion that I was "sick" and suffered from a chronic, presently incurable, degenerative neurological illness!
In hindsight, it is my personal opinion that the ideal candidate for the Activa RC IPG would be a more sedentary person who is capable of sitting still for long periods of time.
I can't help but ponder additional concerns which the Activa RC IPG raises if, for example, one likes to spend time in the back country camping and hiking for more than a day or two, as I do, or if one travels to foreign countries, where an adapter may be required in order to keep the battery fully charged, as was the case for when I traveled to Glasgow, Scotland, for the 2nd World Parkinson Congress in 2010.
May 7, 2012 - Activa PC Battery
Little did I know in 2010 that I would have the chance to have another battery re-implanted sooner versus later. I had surgery on December 1, 2010 to determine if the two electrical leads, that had previously been determined to be fractured, were fractured extra-cranial or intra-cranial. It was ultimately determined that the lead connected to the electrode implanted on the right side of my brain was simply a extra-cranial break that was easily remedied by replacement of that particular lead. Unfortunately, the fracture on the left side proved to be intra-cranial and, thus, required yet another brain surgery on December 9, 2010.
The incision on the right side of my scalp did not heal properly, and I was scheduled for wound revision surgery on May 20, 2011. Although that surgery was relatively minor in nature, I developed a rare staph infection that ultimately required total ex-plantation of the entire Medtronic DBS hardware system (including both electrodes, the leads and the extension leads, as well as the pulse battery itself) in two separate surgeries, the first, on June 24, 2011, and the second, on August 4, 2011. From the date of the first surgery on June 24th, I had a PICC line in my arm which was threaded through the vein into my heart, through which I was supplied with a continuous infusion (24/7) of vancomycin for approximately 14 weeks until I was finally cleared to have the PICC line removed on September 27, 2011.
During this time, I was without any neurostimulation whatsoever. It was this unanticipated vacation from DBS that made me realize and appreciate the full extent of the benefits that I had realized as a consequence of DBS surgery. I was forced to juggle approximately 45 pills per day in order to keep my PD symptoms somewhat under control. I underwent a complete new evaluation to make sure that I was still a good candidate for DBS surgery. This included a full neuro-psych exam, flying to Los Angeles to obtain a second opinion from a world-renown DBS specialist, and having a DaTscan of my brain. I was, at last, determined to be a candidate for re-implantation, which surgeries took place on April 20, April 27, and May 7, 2012.
However, when it came time to implant another IPG, I opted for the Activa PC battery, with the full approval of my neurosurgeon and my neurologist, and, to this date, do not regret my decision. It remains to be seen how long it will be before I require my next neurostimulator battery replacement.
I most definitely would have DBS surgery all over again. Despite the complications, I have experienced significant overall improvement in the quality of my life as a result of the DBS surgeries.
Disclaimer: The opinions expressed herein are those solely of the author, who has had no formal medical training whatsoever, and are based solely on the author's personal experiences and observations as a lay person diagnosed with Parkinson's disease for more than 20 years.