Many of you already know my adventures with getting Deep Brain Stimulation surgery (DBS), but for those who don’t… a quick review. I was first diagnosed with Parkinson’s disease at age 32, but I had symptoms for years before the official confirmation. I found excuses for my slowness, rigidity, or other uncontrollable movements. But I never thought it’d be Parkinson’s!
While we know Parkinson’s does not have a cure, the only thing we can do is slow the progression of our symptoms of PD. As many of my readers know, you don’t “die from Parkinson’s, you die with it.” What this means is that it’s the progression of symptoms that lead to complications that could kill you… Such as you fall and break a hip, have to go under anesthesia, or aspirating your food because you can’t swallow properly, and getting pneumonia.
I’m on my 4th battery change since having my stimulators implanted in 2010 which is about 2.5 years per replacement. They were cutting into the same place to remove the old battery and replace it with a new one. I knew I needed an upgrade. I am not shy to say that I am the girl that wants all the newest technology. Yes, this is me counting the days until Apple releases the latest model iPhone 13. No shame. I was stoked to be the recipient of a rechargeable battery that can last 10-15 years! What?! I’m game!
There were a few complications that I had to work through. I had 2 Medtronic Activa, bilateral single connector units. But the new rechargeable has a double connector. Let me start to unpack this…
My single battery on my right side was going dead. But my single battery on my left side still has juice, so it didn’t need replacing. Then we’re stuck with the question of do we tunnel the wires from the left side over to the double connector on my right side and is that the safest plan seeing as those wires have been encased in my body for over a decade? With the advice from my Neurosurgeon, we decided to replace my right side with a rechargeable battery and agreed to worry about my left side when the battery runs out.
The day of surgery came and was uneventful until I was in recovery. I woke up in a groggy drug-induced fog to an array of devices that I had never seen before. The Medtronic rep was there to instruct me on how to recharge my battery and how to connect to my stimulator. Then I was sent home to heal. With Fro Yo in hand and my dog nurse Crash overseeing my recuperation, I rested. It wasn’t until I woke up that evening that I realized that I didn’t know how to charge my battery. I was still on pain meds and staring at what seemed to be an impossible feat of tools and technology. I decided to not worry about it for a while. On the third day, I figured it out but was confused that the communicator stated my battery was still at 100%. I was freaked out that I got a lemon and that my battery was depleting, but I couldn’t charge it. I will explain the mystery below.
Here are some questions I’ve been asked about my battery replacement
-Why didn’t you get the rechargeable sooner?
Because I was waiting for Medtronic’s new “brainsense“ technology to come out. But after it was FDA approved, I learned the battery life span was equivalent to the devices I already had. It wasn’t until I chose not to keep putting my body through surgery every few years that I really gave a good look at the rechargeable.
-Am I still happy with my decision to get DBS?
I decided to Deep Brain stimulation surgery because I wanted to slow the progression of my condition before I lost muscle mass, flexibility, and balance and then got DBS when I was “bad enough”. I would not be getting a battery change if I didn’t want to keep it. I am absolutely happy with the choice of getting DBS and would do it all over again if given the chance.
-Was there anything that surprised me?
I was expecting to find that the battery drained like my iPhone, counting down from 100-0%. It started at 100% then 75%, 50%, 25%, then if you let it die completely twice, you will not be able to restore battery function and it will need to be replaced… Yikes, we’re talking surgery.
-Would you recommend the rechargeable for everyone getting DBS?
The rechargeable units are not good for someone who can’t manage to cognitively and physically maintain the charge. There is some awareness that one must have in order to work the device.
-Did you have any fears about getting a rechargeable battery?
Yes, being chained to an electric source, requires me to plan ahead. More importantly, my post-apocalyptic zombie brain thinks about a solar flare from the sun creating an electromagnetic pulse (EMP) hitting earth and wiping out all electricity… but I’m sure that that’s a common concern to have.
Share your experience with DBS in general, rechargeable or not. Have you found it helpful?
I have Dystonia. I got my DBS rechargeable stimulator about 11 yrs ago. right now I am getting electrical shock in my chest from my DBS. I have contacted Medtronic’s. And no relief Do you know what it is like to be shocked every three or four minutes 24 hrs a day. It is VERY painful.If Medtronics or my noersurgen . Ever get back to me I will be asking to have my whole system to be removed
Hello Kristine,
I am sorry you are having so much difficulty. Medtronic can run some tests to see if you have any apediences which will see if a power surge is happening along your wires. You could have a break in the wire. My Doctor assured me that having a broken wire is very rare, but I assured him I was getting shocked. Then they took a chest X-ray and there it was, clear as day, a break in my wire. I even posted the picture in my blog. I will list it below. Try not to give up on DBS… it can be a helpful tool. You need to have your Neurosurgeon to communicate with you better. I’m surprised that Medtronic isn’t being more proactive with helping you. You can ask our Medtronic rep to meet you at your neurologist’s office for an appointment. Then you can have 2 sets of eyes on your DBS. Good luck! Keep us posted!
https://www.perkyparkie.com/2014/10/deep-brain-stimulation-sequel/
Just saw your blog site info on Me Over PD website. Very timely info for me. I am contacting a neuro surgeon this week to evaluate DBS for me. Thank you for all you are doing for PWP. You are really a blessing.
Make sure you have the Medtronic tech make sure your leads are functional. My wife got leads that had one segment out per side, In her case, it was still working but not optimal.
I had DBS done in 2015 with single battery for both sides. I was diagnosed in 2007 at a age of 48 but had symptoms going back to the 90s. I had several Drs that recommended DBS but I said that I didn’t need it Boy was I wrong DBS was the best thing to happen to me. And I would do it again I only wish I would have done it sooner I have had 3 battery replacements and I went with the rechargeable the last time
You are such an inspiration… I read your book and loved it…I check your blog every day…😇…
I had DBS about 4 years ago and replaced my battery with a rechargeable one. It only takes about 15 minutes a day and is part of my morning routine. I would highly recommend DBS especially for those who are dealing with dyskinesia due to their medication. I was able to reduce the amount of sinemet I was taking which lessened the dyskinesia I was experiencing considerably.
Hi Allison,
Thanks for your DBS story! I had the surgery in 2016 with Dr. Duma (your neurosurgeon) in Newport Beach, Ca.& since then have lost track of all my battery replacements! My right device requires far more current than the left, hence more frequent changes. No big deal, the surgeries are not a problem.
Question: Which rechargeable DBS battery lasts the longest between charges, Medtronic, Abbott or Boston Scientific?
Thank you & keep your updates coming!
John Barry
Chicago, Ill.
Hello John,
As for you’re question, Abbott doesn’t make a rechargeable. Medtronic and Boston Scientific are comparable 10-15 years. Hope that helps!
Can i ask how much the replacement surgery and batteries cost you? Thank you for your blog!
About $7,000 out of pocket. Expensive, but I know it can be less if you have good insurance. Hope that helps.
I was diagnosed in my 40s. Had DBS installed 7/2020. Did both sides of the brain, and the single neurotransmitter all in one fell swoop. The Abbott DBS uses Apple technology. I was sent home with an iPod to look at settings and battery life, and as of last July, my neurologist can change my settings remotely by using an app on my iPhone. It’s like a FaceTime call, but she is connecting to my DBS system, making adjustments, and seeing the results through the app. There are so many new and amazing developments in the area of DBS devices, which is great while we wait for a cure!
You didn’t get the deluxe model that comes with solar cells mounted on a hat to charge batteries? Or maybe an option to re-charge from an Electric Vehicle? Very glad technology caught up with you. Next they should develop a wireless system while we work to defeat P. D.
Dad,
I think that model isn’t out yet. Ha-Ha!
Thank you Allison for this report. I had my DBS installed 5 years ago (and turned on May-2016), and I feel this was the best thing I ever did in my life (well actually 6th best thing after marriage 30, and our 4 daughters). Since 2016 I have had my battery replaced 4 times). My Drs set the voltage at 3.2 (4 contact points on the right) and 3.7 ( 3 points on the left). Single battery installed for both wires. I was considering getting the rechargeable one this past January but we decided to keep the regular battery type to minimize future charging issues. My memory stinks and I have more missed several medications times during the day even with 2 alarms set for my every 3 hour meds routine. I am looking forward to seeing your progress on the rechargeable type because the next replacement will probably occur next year and We were considering recharging to minimize future surgeries. Thank you.
Thank you for sharing your experiences. I’m newly diagnosed and in my early 50s so this blog is an inspiration.
All the best,
J
I am 64 and preparing for DBS. Your blog is a very important source of inspiration for me. DBS , although sees to be “The unique Way to feel better” I have the impression it is long, tidious,, uncomfortable. Only hearing you say(all of you) you would do it again reassures me. Thank you!
Can you describe the process of recharging your battery? How often do you do it? How long does it take are you tied to an outlet,?
Hi Charlie,
The last picture in my post shows the recharger. It’s a big white device that you place over the battery and it charges that way. You also have a weighted drape that goes over your neck to keep the device in place. I’ve been charging it about every 2 days for 20 minutes and that brings me to 100%. It’s fairly easy, you just sit down and watch one of your favorite show on TV. Hope that helps!
Hey Allison, thanks for all your feedback on the DBS battery options. I’m thinking about getting a rechargeable battery just because my insurance situation. I don’t regret having surgery done, it has given me my life back, as much as possible with the device. I highly recommend DBS for everyone!
Is there a way to know if it will help me?
Hi Boker,
To see if you’re a candidate for DBS, the Neurologist can do what they call a Sinemet challenge, which is where you go off your meds for a night, and then they test your movements without meds, then wait an hour and give you meds to see if you respond to Carbidopa/Levodopa.
I am guessing that much of the cost is out of pocket and insurance doesn’t cover DBS. How does a patient go about the finances of this option?
I am reading your story and another parlor who recently is this too. It takes a lot of courage.
Dr. FLory,
I would check with your insurance. I was pretty surprised at how many companies cover it. Good Luck!
I have a BC/BS plan through Medicare plus my wife has me under her own insurance plan. With all of the deductibles we ended up with about $1200 out of pocket for the battery replacement this year. The original Surgery cost about $1500 on my work BC/BS insurance plan. The process for getting approval was completed by the hospital PD team.
Good Morning P.P.
You inspire me so very much. Thank you for sharing your P.D. journey with the world. Praying for you always…asking Jesus to never give you more than you can handle. Stay strong my friend, you are amazing!
Warmest Regards,
Linda 🌺♥️🌺♥️🌺♥️🌺
Hello Linda,
Thank you for the kind words. You made my day!