I am going into surgery tomorrow to have my Deep Brain Stimulator batteries replaced. It’s time to get a fresh set put in. So while I am recovering, I thought I would repost this blog… enjoy!
Now readers, before I get started, I want to remind you that my blog is strictly for entertainment purposes and is not meant to diagnosis or treat any medical illness. These 19 facts about Deep Brain Stimulation (DBS) Surgery are based on information I have gained from my personal experiences. I am not a doctor, and although I am freakishly smart, you should probably follow-up with someone a little more serious than myself.
- Deep Brain Stimulation Surgery (DBS) is the surgical implantation of an impulse generator, which sends continuous electrical pulses to a targeted part of the brain.
- DBS is not a cure for Parkinson’s disease and although it does seem magical, it is important to have realistic views of its possible outcomes.
- Because “20 Things that you might not know of Deep Brain Stimulation” is just too many things.
- Since the introduction in 1987 of Deep Brain Stimulation Surgery to manage Parkinson’s disease symptoms, its evolution has led it to be a popular and acceptable form of treatment.
- Medtronic is the oldest and most used manufacturer of Deep Brain Stimulation Technology.
- Can you guess what these are? Clue? They were implanted in my body in 2010 and not during an alien abduction!
- A typical battery can last 2-5 years depending on the amount of electricity being used by the patient.
- Just as important as placement of the lead in the brain, is the programing of the stimulator. With four geographical sites on each lead, and the ability to adjust pulse frequency, amount of voltage and the pulse width…. You can see how essential it is to find your individual settings, which give you the best relief of Parkinson’s symptoms, with the least amount of side effects.
- Being a dude, my Neurosurgeon was not informed about the hazards of placing rubber bands in your hair and the likely chance that they will create a Bob Marley worthy dread that will have to be cut out. I guess you can say I am wearing a “layered” hairstyle now.
- Medtronic does create a rechargeable battery, which can last up to 9 years, but you have to wear a vest to charge the battery and it does not come in pink or purple, so this is just not fashionable enough for my sassy taste.
- The stereotactic head frame that is used to create a three-dimensional coordinate system to locate small targets inside the brain, is also called a Halo. But between you and me, there is nothing angelic about it… in fact, this was the worst part for me. It sucked a cactus, to put it nicely.
- Also, if you get dry mouth during the procedure, you can request a sponge sucker! Sounds super yummilicous, right?! Hey it’s better than requesting an oral swab that tastes like plastic.
- You don’t have to shave your head. Let me repeat myself ladies! You don’t have to shave your head. This was a huge factor in deciding to get DBS…. don’t judge me.
- All Neurosurgeons have their own protocol, but mine breaks the DBS procedures in to three surgeries done in one-week intervals. First week, one side of the brain is implanted, the second week, the opposite side, and the third, the chest stimulators are placed and connected to the wires leading up to your brain.
- Hoag Hospital in Newport Beach, California, where I had my surgeries done, offers free valet parking. Bonus!
- With the amount of iodine, blood and other debris, after surgery your hair becomes a perfect place for birds and rodents to nest.
- Some of the complications from DBS can include infection, diminished speech, poor balance, unwanted mood changes, or muscle tightness in face.
- Yes, if you break a wire above the connector, you will have to get a revision and replace the wire and lead. Look at it this way… at least I am still living life to its fullest…. wires or not!
- No, you will not be viewed as Frankenstein. No, you can’t not program your stimulators to be a better cook or a better lover. And no, I am not the bionic woman now, because honestly, I was already a superhero.
Do you know if you have two leads placed do you need to batteries placed or are they able to attach both leads to one battery?
Hi Ashley,
It depends on who the manufacturer is. I have Medtronics and they do have a battery that can hold both leads. It all depends on which company you go with. Hope that helps!
My doctor has charged me to decide between DBS and another surgery to help treat Epilepsy. I know a LOT of facts about the science etc etc, but now as a woman, I need to allow myself to think about my hair!!! I have AMAZING hair, so I would almost grieve it like a friend if it had to go. So your point was comforting. But can you explain how they could see and how they did the procedure around hair? Did they shave chunks here and there? This’ll be my first, and hopefully only, time taking a hack at the ole noggin so I don’t know what to expect at all.
Thanks
Elize,
They cut a small spot on the top of your hair, but it’s easy to cover with the hair surrounding the incision. I was so happy not to have to worry about my hair on top of the fear of my pending surgeries.
I was required to shave my entire head.
There is sooooooooo much misinformation about this surgery. 1) it is much more extensive that informed. I was told the battery would be placed near my collarbone I am a 36-C – so, no collarbone. Can’t sleep on right side (battery drops and extends); Leads on Right side, can’t lay head on left side, painful,. Hair hasn’t grown back where incision was made on my head. Can’t use Right arm for approximately 15 weeks; 13 weeks in bed. I had just completed 28 lb weight loss; only to gain 35 due to inactivity and bed rest.
I would NEVER encourage anyone to have this surgery. Fortunately for me; I had reached 100% out of pocket by the time I had surgery.
Ii sunk in to deep depression. I don’t recognize the person in the mirror at all. I’m sickened by how much time it will take me to be me again. I’m estimating 2 years.
How sad…I was full of energy, no complications AT ALL with Parkinson’s since diagnosed in 2012 and starting meds. NOW I look like I’ve aged 20-30 years, 30 lbs gained, no hair – have to wear 2 bras, sports bra and regular bra. Even then have to hold my breast when walking or riding in a car; can’t jog anymore, can’t exercise extensively as I did before ( for concern of leaf detachment) ASSISTED LIVING HERE I COME….Please read EVERYTHING if you have any type of social life what so ever – rethink surgery-I’m dying inside.
Hello BB,
I am so sad to hear you have had such a difficult time with the DBS. It doesn’t sound like your Neurosurgeon explained everything… the good and the bad. To shave all of your hair and not to be able to exercise sounds like it has pushed you in a tailspin. I can only imagine how depressed you would be. I wish that I had something to say that might bring you comfort, but my words fall short… all can say keep fighting! Thank you for sharing your story with us.
Oh boy, you laid it all out perfectly. I am 7 months out from DBS and while initially I felt better,now I am aging by the day, or so it seems!
my hubby had DBS in FEB 2019. Hoping to get some of his life back, however he has experienced voice issues and every time they adjust it he is sick as a dog the next day. Please if anyone is considering the operation. Read all that might happen then weigh the pro and cons.
Surgeon offices tell us the operation was A SUCCESS to them. in the Dr office when adjusted he does well. Hours later he is shaking and can’t stop. Sorry but I just hope people realize this might happen. He went through all the test before if.
Tess, thank you for sharing your experiences with DBS. It’s important for people to weigh all their options.
my wife has pd and a dbs with rechargeable batteries. she likes to stay active and hates sitting and waiting for the charge. she has a medtronic vest but it will not stay in position. what she wants is something like a muscle shirt tight on her body with a pocket for the charger.
do you know of such a thing or do we need to diy?
Robert and Sue,
Sounds like it’s project time! I think DIY would be the best, then you can make it specific to your needs. Tell us how it turns out!
Hi!!
I’m considering DBS and my surgeon does not give any options other than totally shaving my hair. So glad to read that that was part of someone else’s decision making. Whenever I bring it up I feel like I’m being superficial and people think my priorities are out of line. I’m guessing the reason for shaving is reduced risk of infection. If they don’t shave it completely don’t they have to shave partially? Any advice you can offer would be appreciated!
Tess, you are absolutely not being superficial. If I had to shave my hair completely off, It would have been a much more difficult decision to make and I would almost hate Parkinson’s more because that would be one more thing it had taken away from me. I had a small area shaved in my hairline, which was covered up after healing with my surrounding hair. So I noticed very little hair removed, but did feel like a chia pet when my stubbled hair grew back in that area that they shaved. Also, my stimulators (the batteries) were placed under my breast tissue, so you don’t see the actual device under my skin below my collar bone… which is the typical location. So there are other options, but it all depends on the surgeon’s comfort level.
Are there not other surgeon’s you can go get a second opinion? I know that every surgeon is different, but you also have to find someone who will listen to your worries, without judgment. Keep us posted on how you’re doing and what you decide.
Scheduled for DBS on July9, 2020. PD currently affects only my left side, but am having both sides installed as my health is currently stable, and the PD will eventually affect both sides. We just won’t turn on the device for the right side until it’s necessary. I appreciate that the surgeon will do the brain and the chest surgeries all in one session, because the school year begins August 10th, and I need to be back in the classroom with my little warriors asap! But shaving my head is going to be a humbling experience.
Karen,
I will send you positive thoughts your way hoping for a quick recovery!
Started the DBS procedure last week, but I stopped breathing while under twilight sedation. I have apnea, so I wasn’t surprised, but it freaked them out, so they stopped and rescheduled me for general anesthesia for the whole surgery. I really like the neurosurgeon and the device he uses (Abbott) but it was frustrating to be bald for a week… Looking forward to getting it done! And BTW, kudos to Mission Hospital. Nicest staff I’ve ever encountered.
Karen,
Oh no! I am sorry to hear that you had trouble with the sedation. But hopefully, they will get the surgery all taken care of soon. Bald for a week… that sucks! But the time for cute bandanas and hats! Thanks for keeping us up to date on your progress.
I had the surgery in August 2016. I also worried about the hair issue. My doctor only shaved a strip from ear to ear about 3 inches wide, leaving a fringe of bangs in the front. I could wear headbands and scarves to cover my stitches.
I am scheduled to have the surgery. Your sense of humor has eased my fears tremendously.
Loretta, happy to hear my blog has helped! Good luck with your surgery! Keep us posted.
I’m so happy for you that you got DBS. I’ve heard such wonderful things about it.
my mum Jennifer who is now 62 years old was diagnosed with Parkinson’s in 2010. She was fine for a few years then sadly went quickly downhill. She had to retire on the grounds of ill health and now has carers visiting 4 times a day as she lives alone as she was widowed in 2003. She is now at the advanced stages of Parkinson’s with drastic on/off fluctuations and dyskenesias. She can’t leave the house herself and is very often in a wheelchair.
Last year we went through the very long process of being assessed for DBS. We had our hopes up about this. My mum did well in the levodopa test and showed a good response to the drug, however she failed the balance test and they were worried that her already low speech would get worse if they put her through the surgery. She also didn’t score as highly as they wanted in the retaining new information section of the in depth memory and thinking test. We were devastated she wasn’t getting the surgery but the consultant at the results appt suggested the duodopa pump instead. This felt like light at the end of the tunnel and some new much need hope for us all! We had to speak to the Edinburgh consultant about progressing the pump. We waited a few months for the next appt. The Edinburgh consultant said he wants to progress the apomorphine pump instead. He said it delivers the same benefits and he only has one patient on the duodopa pump and therefore a lack of experience. I’m unsure how I feel as I’m obviously glad he has suggested something but it’s not the one I had spent time researching that the Glasgow consultant suggested.
Just looking for some help. My mum’s quality of life is so poor just now. She was always so active before and such an amazing mum. I just want her to get the best possible treatment and not be restricted due to experience or cost. Anyone offer any help/advice? Thanks so much, Alison
Alison, You are going through the wringer! I would start by contacting the manufacturer of Duopa. Their contact info is 1-844-438-6721 and you can also find them on their website online. Keep on advocating for your mum… she’s lucky to have you!
I would find a doctor who is familiar with the duopa pump – I had considered DBS about 4 years ago but was concerned about speech and cbalance problems – (I have more stiffness and slowness than tremor and it seemed to me that DBS wouldn’t necessarily help with those) I started duopa 20 months ago and am in much better shape now. I was also my dIoctor’s first patient to use the pump but the duopa manufacturer provides a lot of help directly to the doctors so that shouldn’t be a huge obstacle. I’m a year younger than your mother and it has made a huge difference for me. Is the apomorphine pump a rescue medicine or does it replace lcarbodopa/evadopa pills?
Hope the surgery went well. Take care!
Dan, thank you!
Good Luck Allison,
My last battery change 1 and 1/2 years ago was highly unusual. I was in rehab after my stroke and about to go home.When at home my Physical Therapist noticed I was moving slower than normal. Dr. Martinez said it was battery was extremely low. This was Monday, I begged the schedule nurse to get me in this week. It worked out. Still don’t know what caused the battery to discharge since it was ok the previous visit.
Battery change # 3 in 2017.
Tom,
That’s crazy! I hope they find out why your battery life is so short. Have you thought about the rechargeable? Good luck. I’m sending you positive thoughts!
Good luck tomorrow!! My dad’s doctor just recommended it to him and he’s starting the process of appointments and what-not to make sure he’s a good candidate. Any tips or advice for a first-timer?! Did you notice diminished speech, poor balance, unwanted mood changes, or muscle tightness in face from your first procedure? He’s nervous but cautiously optimistic – we all are! If he can get his tremors under better control to eat without using his fingers or play guitar again his whole life would change!
Hi Samantha,
I did experience some negative side effects, but they were able to adjust my programming to eliminate those issues. If his main issue is tremors, he will do famously! Good luck! Keep us posted!
is this possible to replace the non chargeable battery with chargeable battery after the surgery.
As always you make me laugh give me info I need to know. Last week my hubby and I had consult about DBS. I was over overwhelmed by all the info but my doctor was wonderful and answered our questions. Hopefully, I can have surgery in June after school is out.. Tomorrow calling to start the ball rolling. Thank you. Sharon
Good Luck!!
Hi Alison. Good luck tomorrow on your battery replacement.
I’m going to have my DBS done on February 14, 2019. It’s taken a long time and lots of appointments but now everything is moving very fast. I’m surprised how nervous I’m getting. I’ve been wanting this for a long time and now it’s almost hear. One of your points was my biggest problem. I have to keep reminding myself that everything I do is not a cure…as much as I know this, my brain keeps saying do an extra 3 push-ups, Run a bit faster or a little farther,1 more min of planks, punch the bag harder, eat this food not that food, rest regularly etc.
And I still slowly progress. A new symptom, meds wearing off sooner then 3 or 5 months ago. It slowly over takes without you really knowing. That PD monster can be pretty sneaky.
By the way I’m going with the rechargeable batteries. nothing to do about the colors. I figure I can get some more tv time or reading time when charging and my wife can’t say that’s enough tv..lol..
Gary, I wish you all the best on your DBS adventures.
Gary, I switched to rechargeable batteries, after the original ones needed replacement after only 2 years. Even though it’s an out-patient procedure, it still takes preparation. (Oh, and by the way, when they require an EKG, make sure your remote is with you, cause you’ll have to turn it off.) Rechargeables are supposed to last up to 15 years, but I find it a “Pain in the A_ _ ” to charge them each night. After 6 months, I am used to this nightly function, and even venture to skip a night or only do it partially. Now, I tell people hat i am the true Bionically Charged Woman, with my remote to access the DBS voltage, and my charging my body every night !!
i must tell you, that DBS changed my life for the better. Now, I speak to so many who desperately want it, but are not qualified candidates, and my heart goes out to them.
Great points to mention Ann! Thank you for sharing.
Just had my battery replaced. It was no big deal until I reacted to the covering on the wound and paper tape. A huge red itchy rash took over my neck and chest. But a little cortisone here and a dab of tea tree oil there and it’s almost all gone.
I think Medtronic should make an earring mounted DBS booster. When you need that extra power to get your right sided tremor to slow down, you nonchalantly reach up to adjust that left earring.
Love your blog and your humor.
Thank you Carol!
Hey Perky,
Have you heard of anyone have good results from DBS but the results didn’t last. Also, what makes one person a candidate and another not.
Thx
Rick
Hi Rick, Every Parkie is different, but in my experience, I have noticed that people forget that DBS doesn’t stop the progression of your Parkinson’s. So the programming of the simulators must be monitored to stay at the best settings that help your symptoms with the least amount of side-effects. Here is a link showing my posts about DBS…Hopefully, you find this helpful.
Hi my name is farhan ullah .i am from Pakistan I am also suffering from esstional tremor .the doctor have also advise for dbs so I am so worry about that I need some information in this regard so As there have any patient which has been done dbs.
What do I do if they insist on the head shave…help me please.
Every Neurosurgeon has their own protocol on how to work around your hair. Some require a complete shave to prevent the possibility of infection. Others (such as mine) worked around my hair. I think this is a conversation you should have with your Doctor. Then you can create a plan that works for both of you.
Good to know and thank you from the bottom of my heart?
Surgery is next week and I am freaking out? This help s alot!
Good Luck! No need to freak out, just take it one step at a time and you will do great!
Did putting that halo on hurt? I am more concerned with being awake while they place electrodes in my brain. Yes, I understand the brain does not feel pain. But, the psychological aspect of it is daunting, to say the least. Then I also read that you are not really asleep when they drill the holes that patients have heard the drill and felt the pressure.
They sedate you when they put the halo on. But I would say that was the worst part of having this heavy thing on your head. I was not awake at the time they were drilling in my skull. The anesthesiologist kept me comfortable and sage. It really is the anticipation of the whole “brain surgery” thing that gets you.
Thank you. That helps me, but I am not all in yet!
I was awake for all of it.. The drilling was the worst part of the surgery process.. The halo was the worst of the pre surgery process, aside from being off meds for that long.
Yes..well it was for me, the worst part..but I’d do it again in a heartbeat.. I just had mine done August 14th..
Hi All,
I’m having DBS surgery in 8 days (July 3, 2017) and am very excited and interested about the process itself as well as the potential benefits I hope to experience (fewer tremors and meds).
I am especially interested in the time after surgery and how long before I will be able to walk (3 miles) and bike (3 miles each), 21 push-ups, stretching, and shoulder “twirls” (frontwards and backward). Exercise is absolutely essential for me. I feel better in every way possible, including my physical health (i..e., strength, breathing (wind), muscles, etc.) but also my attitude…. I definitely feel better about myself, have more confidence, and enjoy the socialization of meeting neighbors and friends out walking their dogs, waving hello to drivers in their cars, chit-chatting with members of my club, and just an overall gratitude of my life, where I live, listening to the sounds of the great outdoors, etc.
Hippocrates, the father of modern medicine wrote that “Exercise is the best medicine.” This is so important. For most people I know, they rarely work out or if they do, they do it only 3 days a week. While the experts say after 3 days a week you only get about a 10 percent per day additional benefit. Hello? That means the extra four days I work out (7 days total per week…. that’s EVERY day!), means I’m getting another 40 percent benefit. Hey, I’ll take it, including feeling high and good about myself (beyond the physical benefits)!
I know we’re all doing the best we can but I want those who are suffering from Parkinson’s to try working out every day for a month. I’ll guarantee once you get in the habit and making your exercise time a most special gift to yourself and THE MOST IMPORTANT THING YOU DO EVRY DAY. Of course, I’m a strong believer that everyone would have similar benefits regardless of having Parkinson’s!
Love & peace to all living beings,
Michael Alexander (age 70)
El Macero, CA 95618-1002 USA
Hi everyone! I’m a horrific OCD sufferer, and am in the process for DBS surgery. I have some embarrassing vanity questions for you, followed a legit medical one.
I’ve seen a few pictures of people where they have giant lumpy bulbs on the top or sides of their heads (I’m guessing from the stereotactic frame?). Is that kind of response common for DBS surgeries, or were those kind of examples outliers? I’m guessing this question applies to board to people with tumors, Parkinson’s, OCD, and anything else DBS is approved for.
The legit medical question is: After DBS do they keep the device on at all? I know it’s 2-4 weeks after the surgery when you meet with a programmer to fine-tune the settings, but before then are you just straight out of luck?
Thanks for the help everyone!
Brandon, I have bumps, 3 years later. Fortunately I have ample hair to cover the bumps, so no vanity issues. But, my head is always itchy, due, I am told, to the fact that so many nerve endings are cut. So, in review, bumps, itch, no pain, symptom relief.
It took a few weeks after surgery for my doctor to turn me on, or at least my transmitters. I have now had about a dozen programming sessions with the fabulous Rebecka and Vanessa, my neurologists DBS technicians.
Tough job they have, trying program to a moving target. Meds change, metabolisms change (day to day) and so many other things that affect the effectiveness of the programming.
It’s been a bumpy road (pun intended) but well worth the DBS surgery and the constant changes needed to optimize my DBS.
I have not met another person who does not have scar tissue bumps, so i would resign yourself to having bumps too. They are good for an endless supply of “My Favorite Martian” jokes too.
Good luck.
Thanks Peter! That does help, especially with the programming information. Appreciate it!
The bumps that you see on my forhead in the picture on my blog, are from the lidocaine that they use, and it was gone within a few hours. I do have bumps on the top of my head from where the leads were placed and those will not disappear Hope that helps.
It sure does, I was wondering about which lumps were from what and which were permanent. I think you have me sorted out! Thanks again 🙂
I believe the 2 dome shaped lumps are plastic plugs used to seal the 2 drilled holes in skull. I think the MD explained thatto us a few years ago after my hubby had his DBS surgery
Love your blog — I’m two weeks away from surgery and the blog was great to help reinforce my determination. P.S. I’m told meditation helps during the long surgery — Kaiser has a CD called “Preparing for Successful Surgery” that includes imaging and affirmations. It’s very relaxing, only $#4 and available at their Health Education Stores.
Good Luck, keep us posted!
An amazing thing happened when I had my DBS implanted last April. After I woke up from the first part of the surgery I started to notice something was a little different with my PD. Before I went under I had to be without any carba/leva for 24 hours and 4 weeks off Azilect. This was the first time in 2’years that I did not have any carbs/leva in my system for that long of a time period. My tremors were out of control to the point that I had to be strapped into the bed so I wouldn’t fall out.
When the nurse offered me my first dose of carba/leva in recovery I noticed that the only tremors I could feel was in my left foot. I still had some freeze ups on my left side of body and my right hand but for a few days my PD symptoms were not as bad as before surgery. Then after about 3 days they started to get as bad as before the surgery as my carba/leva wore off. When I came back the following week to have the battery pack and controller installed in my chest the Medtronic rep asked me how much relief did you feel for first few days from the PD symptoms? When I told him about the improvements he said this is common in patients when the surgeon places the leads in the correct part of the brain. Because the voltage is so high and all of the settings on the electrodes are varied while the surgeon listens for the “sweet spot” where the leads give the best response, sometimes this type of temporary improvement occurs and shows a successful surgery. He said it was like being super-charged. Please let me know if you experience this temporary improvement. Best wishes for your recovery and I will be praying for you.
Yes. It’s called a honeymoon period. It’s a weird phenomenon that happens to many DBS people.
I just had DBS and it’s been fantastic for my symptoms – but the wire in my neck is super-tight. They said it might be scar tissue build-up. I had the surgery a month ago. But it doesn’t seem to be getting any better. What was your experience with the wires?
Wires are tight in the morning, but then loosens up during the day. Scar tissue in a month?
My DBS was August 25. The wires feel like cords under the skin, not tight but building up scar tissue. I was told it was possible there could be pain when turning my head. Have had no problems. Tremor totally gone but still walk unsteadily. Have had 3 adjustments. Trying to be patient. Sleeping just fine for a change.
Yes, there should be some tightness. I do feel that I have tension in my neck and get more frequent headaches… mostly when I am “off” and my body is very rigid. Wish I could say that it will go away, but I’m afraid that is some of the frustrations when putting the lead in. Congrats on your tremor being gone! That is huge!
Here is an update on my original post. My DBS was August 2016. My tremors have not returned unless I am very tired and my levadopa is not working. Other than that the Parkinson’s has gradually gotten worse. I have begun to fall frequently with repeated injuries to hip, shoulder, knees. I need a walker anytime I go outside and get dizzy and have vision problems. I am very grateful for the surgery and the lack of tremors but wish it had done more.
Linda, I am wondering if checking your programming and see if any adjustment could help. Good Luck!
I have adjustments every three months, sometimes more often and I have had medication changes too. I did have the crystals in my inner ears adjusted and that helped a lot temporarily with dizziness. Lack of energy and fatigue are far the worse problems.
Hi Linda, Lack of energy is a challenge. It’s difficult to get motivated to do anything when you’re struggling with fatigue. Hang in there!
Very random question, but I have had dbs. Do you know if getting a tattoo is ok?
I don’t see why not.
How long should u wait after being discharged to get a tattoo
Where on your body are you thinking of getting a tattoo? Will it impact your incisions?
I am a Parky too but not very Perky. I am considering the surgery in the fall and truthfully I am scared. You said so much I wanted to hear. I got the impression that I would have to have my head shaved at least the top! What?! Also what was the recovery like? How long and how debilitating?
Some surgeons still choose to shave your heard for DBS, so just double check with your Doctor. My DBS placement consisted of 3 surgeries, a week apart. Week 1: Right lead placed, 2nd weeks, left lead placed and then the 3rd week, the stimulators were placed and connected. Every Doctor is different, so just be sure to check with yours for his protocol. Recovery wasn’t too bad, seeing as there are no nerve endings in your brain. My worst pain came from my stimulators being placed in my chest. It is just a sensitive area. Recovery was about a few days after surgery, I was pretty sore. But by the 4-5 day, I was able to switch to over the counter pain meds. The programming of the stimulators takes the longest to find the perfect setting. That was a couple of months, making small tweaks before we found the best setting to control my PD symptoms with as little side effects as possible. But remember, we all have different experiences, this was mine. Yours could be completely different! Good Luck! Keep me posted!
Okay, it’s going to happen! I’m scheduled for August 25th and 26th. Brain on day one and wires and stimulator on day two..I asked both the surgeon (male) and PA (female) what to do about my hair and would he shave it. He answer “I’m going to give you a really bad haircut” I.e. A reverse Mohawk.
He also said the first question every woman asks is “are you going to shave my head?” And men ask “how much will it hurt?” Hmmmm. The female PA recommended I get a really short haircut the day before so the shaved part and the unshaven will grow back about the same and invest in some cute hats and scarves.
Now to the pain…I’ve had three 9 1/2 lb babies ( now in their forties), one with NO painkiller. I can take it. But please God, make it worth it.
I also need to know, how bad is the scarring on your neck and chest. How noticeable is the stimulator? Am I vain or what? Age 69 but still want to look human.
No, your not vain! Just because we have Parkinson’s doesn’t mean that we don’t care what we look like! The scarring for was minimal. But I also had my stimulators placed under my breast tissue, so the incisions are under my armpits. So you can’t see my batteries at all. I am so excited for you! Keep me posted!
Well, I had the surgery August 25 and 26 and came home that same day. First the head shaving…he shaved a strip from one ear to the other about 3 inches wide leaving bangs in front and making it possible to wear headbands in public. I have little memory of the actual surgery except for when they woke me up to test reactions. Post surgerical pain was not bad. The staples were uncomfortable and the processors inserted under my collar bones still bother me. The worst is the brain fog and confusion as well as terrible fatigue. My devices were activated August 27th. Interesting process. I saw my tremor disappear before my eyes! I had a honeymoon day of no symptoms and then they came back😕
Stay with the program. It’s a make all the difference. I didn’t feel that I had good benefits and programming until about six months after my DBS surgery. Hang in there! Thanks for keeping us posted.
Hi Linda,
I’d like to know did you go for your DBS yet? I am booked for 9 July and need to check in at the hospital on 7 July. It will be done in South Africa. Please let me know.
Regards
Retha Greyling
Yes I had my surgery August 25. Tremors still gone and some of my other symptoms were actually more due to high blood sugar which I am getting under control. There are days I can’t even remember what it was like to have a tremor!
Well, as long as they leave my hair alone, I’m doing it!
Ha! I hear you sister!
DBS – Prep/ Procedures /Recovery – I wrote just prior to starting the DBS process – ENJOY
Having Deep Brain Stimulation was not an automatic option, I must say
To have someone poking around in my brain does not happen every day
First -There were all the pre op tests to take and preparatory work to be done
And I will be the first to admit that they did not provide the least bit of fun
But proceed I decided to do- the sooner, the better – that was all my choice
But I did pay close attention to and listened to the concerns of my inner voice
I was eager to move ahead and see what improvements could be made
I really did not have any other decision – the groundwork had been laid
DBS programming is too much like magic for me to fully comprehend
I’m just thankful that the docs know which code to the remote they need to send
Going from my body shaking like a tree in a strong wind that was blowing every leave
To a stillness of my limbs and a calmness and serenity I could hardly believe
The bottom line is simply this – I have done everything that I can possibly do,
So Deep Brain Stimulation for Parkinson’s is what I opted to go through.
Not a decision made lightly or without a multitude of exams and serious talk
From memory tests and mental evaluations to observing me as I walk.
The latter was not as easy as it sounds as I was off my meds for more than a day.
I tried do as instructed but the best I did was stumble every which a way.
An hour later and one dose of meds, I was put thru the same exercises as before.
Now I performed with the greatest of ease and I was ready to hit the dance floor.
I am on the surgery schedule now and “D” day is quickly closing in,
But rest assured, this is one battle I fully intend to win
Beautifully done – must be the first poem I’ve ever seen about DBS!
Looks like you’re going in for a replacement battery. Did you know that Boston Scientific’s Vercise (the one my husband has) contains a 25-year battery? Wild, eh?
Good luck!
Enjoyed immensely.
If anyone is ever perplexed by the adage “Keep fighting the good fight” – please just refer them to Allison’s blog. She’s the best living example of said behavior that I’m aware of.
PS – shame on them for not providing a pink halo!
Allison, you are a super hero. Anyone who goes thru DBS with a positive attitude is a super hero. I am a huge Medtronics fan(DBS May 6, 2013). I do not know very much about any of the other DBS systems. I do know that DBS gave me my life back. As far as I am concerned I am a miracle of modern science and God. I never would have believed life as a Parky could be so good.
I’m getting DBS free through the NIH in Maryland!!!
i’m considering going to NIH for DBS. What has your experience been like? any info you can provide would be greatly appreciated.
I don’t have any experience with NIH, but as for DBS, it was the best decision I had ever made regarding my Parkinson’s.
I had a clinical study ANS (now St Jude’s Medical) system installed in 2006. They haven’t been approved by the FDA yet! It has had to have the batteries (IPG) replaced 3 times already and the wires twice. it has a clunky remote that reminds me of a remote garage door opener. It was like a miracle when it was first implanted It gave me a new lease on ‘near normal’ and it continues to do the job.
Vic
Some pithy comments there, Alison – great stuff! I do love your brave sharing! Just wanted to add some counter-points:
1. My husband’s DBS was done under general anesthetic (the whole she-bang, so no further ops!).
2. His is bi-lateral too, except he has both leads running down one side of the neck to ONE IPG – the ‘battery & ‘smarts’…similar to yours, but smaller – located just under his R collar-bone.
3. His battery(IPG) won’t need replacing until he’s maybe 85…that’s because his battery lasts 25 years (and counting….I like to imagine there’s a cadaver somewhere still ‘ticking’; 25-years is minimum).
4. Medtronic indeed it’s the global leader, but they are very much under threat from new techologies like the ‘cochlear’ platforms that my hubby’s is made of. They are scrambling to get this technology for themselves!
5. As Pete-the-hubby won’t be having further replacements (I expect), the alarmingly high risks of battery replacement are reduced to zero.
6. Difference between Medtronic’s device and Boston scientific Vercise: Cochlear. Obviously means very tiny, and if one ‘light-bulb’ (I always think of old Christmas lights) goes out, the rest override and take up the slack. In Medronic’s technology, if a lightbulb goes out, your stuffed until and new IPG can be replaced.
7. Medtronic RC IPG (recharable batteries) are cumbersome, as you said. BSC’s vercise is easy to re-charge via a comfortable sling around the neck – can be done in increments…say 10minutes to a couple hours, depending on your schedule. Once done, you pop the recharger out of it’s sling an onto a perpetual base the recharges it and needs no further attention until the next time.
8. Pete’s ‘remote’ is like a small cell-phone, just fatter: he ‘marries it to his IPG just by close-proximity – no touching required! It’ll give him his ‘levels’ for top-up, and to adjust his settings is easy (I’ve seen Medronic remotes – huge and nigh-on impossible to read as they’re all in symbols to make it ‘global’.
9. Lastly, my speel-chucker is one the blink…..apologies!
I imagine you’re a cross between Storm, Mystique and the girl who walks through walls. And the Asian chick who is like the Wolverine. A Parkie -Proud with attitude!
Hi Kevin….got your’s as a reply to me (expect you’re referring to Allison)?
Either way, here’s my posts re PD/DBS. You can skip part one of the first post – about the history….these were created a couple of years ago.
For V D Lopez – I know about SJM deices too!
Hope they help!
https://www.linkedin.com/today/post/article/20140816080835-134569387-the-parkinson-s-paper-dbs-read-this?trk=mp-reader-card
https://www.linkedin.com/today/post/article/20140830090301-134569387-parkinson-s-dbs-ii-the-ground-realities?trk=mp-reader-card
I had a very similar experience with the Bristol Scientific. I actually was searching for ideas of haircuts. I have the big long scar to cover and style with I want something feminine but I guess I’ll go to the hairdresser and be surprised. .
Somebody already said it, but yes, you are already a super hero.
It should be known that while DBS relieves certain symptoms of PD, it is really not understood as to ‘why’ it is effective. Who cares!! It works.
Good luck Allison. You know I am on your team.
Sending you hugs for a full recovery!
Yes, you ARE a superhero, Allison. Thanks for the clearest explanation I have seen. May your recovery go smoothly!
Thank you for such an informative, fun read! Wishing you continued success with your DBS.