Hello everyone! I have an appointment with a Neurosurgeon.

[Mary Beth Skylis]

Hey Ephren,

My Dad (diagnosed in 2013) had DBS this Fall. After the second surgery, he came home feeling really distraught. He wondered if he had made the right choice. Since coming home, he has seen some changes. I wrote a full column a bout it recently: https://parkinsonsnewstoday.com/2020/01/08/deep-brain-stimulation-tuneup-dyskinesia-sinemet-carbidopa-levodopa/

Dad does seem to think his freezing episodes have gotten worse. But that’s not something that DBS generally impacts, as far as I’m aware.

I think that my Dad (and anyone who undergoes a surgery like DBS) has every right to be scared. You put your body through alot. But just remember that it takes months to receive the full benefits of the hardware. So hang in there!

[Michael R. Scott]

Have you considered guided or targeted Ultrasound…. There are lots of articles about this process and I believe medicare has begun paying for that procedure which is much less invasive and is having great outcomes.
Mike Scott

[Patricia B Wargo]

I had DBS surgery  4.5 years ago.  My experience was totally positive.  I was diagnosed with PD in September 2004 and had my DBS surgery in October 2015. The timing of DBS surgery should be considered  following a thorough discussion and treatment of your symptoms with both your neurologist and neurosurgeon.

DBS surgery improved the following for me:  medication dosages were reduced from 5 to 3 times per day while eliminating the wearing off periods; tremors were gone; and the involuntary movements that were developing halted. Every 6 months my doctor, Dr. Tsao-Wei Liang, Jefferson University’s Movement Disorders Center of Excellence, makes any adjustments needed to address current PD symptoms.  Though not all symptoms are impacted by DBS, the surgery made it possible for me to improve some major symptoms, which affected my attitude and motivation to address the remaining existing symptoms.

Whatever course of treatment you choose, I recommend educating yourself as much as you can about that treatment, asking questions of your doctor.  Prepare for each doctor’s visit with:  medication history, including physical and emotional reactions to any new or increased medications;  changes in physical symptoms, and address any emotional issues. When possible, your primary caregiver should accompany you to your appointments. I find my husband’s observations and participation in the discussion of my symptoms to be invaluable.

Be sure to be well informed of your neurosurgeon’s experience with this surgery. Remember you are the consumer of their services and have the right to know as much as you can prior to surgery and what outcomes to expect.

[Mary Beth Skylis]

Patricia,

Are you glad that you underwent DBS?

[Shannan]

I just had DBS at 38 years old in October.  Like another post said the benefits are not immediate. The further out from surgery the more your symptoms come back and it’s up to your neurologist to determine the right combo of your medication dosage and the DBS programming.  And it takes several programming trips back during the initial months to get it right. I’m going through that now.  You have to ask yourself why you are considering DBS to begin with.  What symptoms are you wanting to be better controlled, is medication the issue, side effects of the medication. Mine was the severe Dyskinesias I developed. Once you know your why you need to discuss that with your neurologist and the surgeon for the best target and the realistic results.  You may have some new symptoms post surgery but that’s probably because they were already in the beginning stages.  Memory changes should be minimal and temporary…unless you have a surgical complication of excessive bleeding, which is less than 1% if I remember correctly. You have to undergo a Neuropsychological Evaluation before to be approved for the surgery. It checks your current memory and problem solving abilities. If you are too impaired currently there is a higher risk of more impairment after surgery and it being irreversible and they wouldn’t approve the surgery.  Don’t worry about the Neuropsychological….it’s not about getting everything correct, it’s about understanding directions, recognizing if you made a mistake, and just trying to do the task asked of you.  Even though it’s early and I’m still having struggles I can say I’m glad I had it done.  No more Dyskinesias!!!!!

[MaryAnn Cavanaugh]

I had DBS surgery last April, 2019 to help with my tremors which were not controlled by meds. I was extremely tired the first few months and thought I would never feel like myself again. Thankfully that passed. I also felt that my speech had become softer and raspier (no one else seemed to notice) but I asked my  neurologist for a script for additional speech therapy anyway. I had attended LSVT Loud when I was first diagnosed and felt a refresher was needed.  My speech therapist worked with me and my speech if fine now. I also had to have wound revision surgery twice since DBS. The first surgery was for a skin infection on my battery pack in June and the second was for a cap from the electrode poking through my scalp in November. Even with these setbacks I am so glad that I had DBS surgery. I thank God every morning and night that I no longer have tremors. Best wishes to you.

[Barb Bowen]

My husband was diagnosed in 2012, had DBS for his right hand (left side of the brain) in 2013 and for his left hand (right side of the brain) in 2014. It has been a game changer! Completely stopped the trembling the moment they turned on the transmitter.

It doesn’t have a big affect on any other symptoms, maybe a little on freezing gait or draggy foot, and some on trembling in his chin, but they told us it was mostly for the arms/hands/trembling which were his primary symptoms at that time. It works like a charm. When we have to turn it off for an EKG we see just how serious his trembling really is without DBS!

First he had to pass the intense battery of tests to qualify for the surgery at Emory, everything from a brain scan to a cognition test. The surgery itself was NINE HOURS under anesthesia. So he was really, really tired for a long time. And we didn’t understand our role in that recovery because they discharged him at noon the next day. After brain surgery! And I stupidly drove him home (a 2 hour ride) while he felt totally miserable. The second time we went back to the hotel and I tucked him into bed where he slept off and on for the next 24 hours before he felt like making the ride home.

The first time he had monster headaches for a few weeks after the surgery because they drill a hole in your skull to get the wires into your brain. After the second surgery, there were no headaches, so we aren’t really sure what was different. It was a three step process. (1) Hole in skull –  inserted the wires into his brain (used image-guided approach because his head was too big for the halo method). (2) Two weeks later they ran the wires down the back of his neck (under the skin, but you can still feel the hump of the wires) and into the front of his upper chest to attach to the transmitter that is implanted in the chest cavity. (3) After incision heals a bit, go see neurologist to turn on the transmitter. His hands stopped trembling IMMEDIATELY. I was in tears.

His hands don’t tremble at all now. And if there’s a little break-through trembling occasionally we can go up a notch (at home, with our remote) to control this. A useful tool as we face constant progression of the disease to keep him independent as long as possible. We see the neurologist twice a year for transmitter check-ups. He’s going great for a 77 year old. Mobility is another challenge, and speech and swallowing are intermittent obstacles, but we deal with it. They are not helped by DBS. But he can hold a cup of coffee, surf the Internet, brush his teeth, use an IPad, write his name, feed himself, dress himself, etc. Without DBS all of that would be out of reach, literally and figuratively.

Tips – battery transmitters last a couple of years and then have to be replaced in the chest. Outpatient surgery. Depends on how high your settings are as to how long they last. After one replacement cycle the next time we opted for rechargeable transmitters and have to hook him up like a cell phone couple times a week for an hour or two. Not convenient, but a world of difference from the trembling that would exist without it.

Good luck with your journey!