Parkinson’s News Forums › Forums › Living With Parkinson’s › Diagnosis Information and General Questions › DBS side effects
Tagged: Inability to tune, side effects
-
DBS side effects
Posted by geologyguy on July 17, 2024 at 8:19 pmI’ve had PD a very long time: diagnosed 21 years ago! Had DBS surgery 2 years ago, did wonderfully at relieving tremors, but unfortunately has been unable to tune, and took away my ability to walk. Has been most frustrating; neuros have tried to tune many times, including reversing polarity. Seems to work in the doc’s office, but tuning goes away in a couple hours to overnight. Advice appreciated!
Robert Ruiz replied 6 months, 3 weeks ago 10 Members · 10 Replies -
10 Replies
-
I am afraid that u got DBS a little too late.It does save the day the first 10 yrs for a couple of good yrs,depending on the early beginning of diagnosis.21 yrs with PD means another 5,altogether 26 yrs.This is medical information from me-a neurologist.As u correctly say it might do wonders for many yrs with the tremor and it is used in extreme cases of idiopathic tremor.In my country in Europe many immigrants sold their home to get DBS and nothing happened.They carried bedriden their loved ones home.Partly it is the fault of the neurosurgeon who think they can cure any kind of neurological disease from multiple sclerosis to epilepsy to Parkinsons and so forth.
-
Hi Maria! My husband is 59 years old and was diagnosed with Parkinson’s 9 years ago, although he had symptoms such as lack of smell and retropulsion for many years prior to diagnosis. He doesn’t have any tremors. His primary symptoms are dystonia, freezing, and pain. He takes Mucuna Pruriens and Sinemet which controls his symptoms fairly well, although his freezing and falls have become worse in the past 6 months.
We live in the United States and his neurologist has been pushing him to have dbs for the past couple of years. Although we have read about the adverse effects of dbs, when we ask him about the adverse effects of dbs, he downplays them. Unfortunately, we have many doctors who get lots of kickbacks from the pharmaceutical companies, hospitals, and equipment companies. As a result, we don’t know whether or not his doctor is trying to make money on the dbs surgery or whether he has my husband’s best interest in mind.
In your professional opinion, do you think Dbs surgery would be beneficial or not for my husband? We would be very grateful for an unbiased opinion.
Thank you so much!
-
-
Have had Parkinson’s 21 years. Had DBS in 2015 and besides replacing battery, the device has been relatively trouble freer and kept my tremors to a minimum. This allows me to cut back on meds which were creating a slew of bad side effects, including dyskinesia when walking.
-
There is a book about DBS put out by the Parkinson’s Foundation. The Foundation will provide a hardcopy for free or it can be downloaded from the website. I have not had DVS but I’m considering it seriously. I found this publication and invaluable learning about DBS. I’m including the link to the relevant page on the Foundation https://www.parkinson.org/library/books/surgical-options
-
I had DBS surgery two years ago. Through numerous trial and error programing sessions my neurologist programmed two different settings for me. This was necessary because the setting that effectively addressed my severve dystonia, which occurs in the morning reacts negatively with Levodopa, making it impossible to walk. I use second setting after I take Levodopa that does not prevent me from walking, but is not effective in addressing dystonia. The levodopa is effective in addressing the dystonia.
My inability to walk also was delayed until after I left the neurologist’s office, but it appears to be connected to the levodopa cycle and is the worst at the height of the cycle.
I know this is not your exact complication, but I wonder if the DBS impact on walking is cuased by a similar negative reaction between Levodopa and DBS.
-
My husband has had Parkinson’s for 10 years and starting to have severe dyskinesia. We are and have tried many things to off set the dyskinesia after his carbo-Levo dosage. His neurologist has suggested DBS due to the extreme side effects he has. He suffers mostly from tremors. I was curious if anyone with similar symptoms has had DBS?
-
A woman in my caregiver support group said DBS helped her husband’s dyskinesias a whole lot.
-
Hi Grammie, My 59-yr-old husband had DBS surgery in July 2023 after being diagnosed in 2018. He also had terrible dyskinesia from C/L. He had to drastically cut his dosage which meant he has very little “on” time. Since his first DBS programming, he has not had any dyskinesia to date even after increasing his C/L dosage.
Also Grammie
-
-
I’m so sorry it has not worked out for you. My husband has had a DBS for 17 years for his right side and 15 years for left and is still benefiting. Has Medtronic been able to help you?
-
I’ve just recently gotten DBS surgery and I talk a lot more now and I cuss a lot more now..not angry cussing because I’m always optimistic but yeah I’m driving my caregiver nuts! Lol
Log in to reply.