I’m a 75 year old man, in Feb. of 2013 I had my first DBS implant,(for the left side) to control severe tremor, I had it done at the Cleveland Clinic, and couldn’t of been more pleased with the good results! Then in Sept. of 2015 I had the DBS for the right side implanted, again very happy with the results! If you are a good prospect for DBS because of your severe tremor I would, from my personal experience say go ahead, it sure helped me! I’ve seen at least 95% improvement on the left side, (I’m left handed) and about 85% to 90% on the right side. If you would like to know more about my condition and DBS experience I could tell more of it, If you comment on this post, I’ll write more.
Thanks so much for you input! I’m so glad to hear that you’ve had such success with DBS. We’d love to hear more of your story, which may be featured on our site. You can do so by submitting it here: https://parkinsonsdisease.net/stories/. Thanks for being part of the community!
Chris, ParkinsonsDisease.net Team Member
I am a 68 year old male with Parkinson’s diagnosed 12 years ago. I had DBS surgery one year ago at Holy Cross Hospital located near Rockville, MD. Two leads were placed in the STN areas on each side of my brain. The surgery appears to have been successful, with immediate tremor and dyskinesia relief even before the system was activated. My neurosurgeon placed four fiducials (attachment points) in my skull one week prior to surgery. A Starz frame was secured to the fiducials at the beginning of the surgery. With this system your head is not secured to the table which was important to me due to claustrophobia. I was awakened during the lead placements to answer questions and perform requested arm and led movements. I then returned to sleep during the remainder of the procedure. I did experience some discomfort but no pain. Stayed in the hospital for one night, was released by the middle of the post surgery day. Returned one week later to have the neuro stimulator/battery placed and the wires connected. This was an outpatient procedure, I was sore but no true pain.
The stimulator was activated about four weeks following surgery. The improvements were quite noticeable my arm swing actually returned to normal!
DBS issues/warnings to potential patients: I have experienced great difficulty in achieving optimal settings despite at least eight adjustment sessions with several different doctors and nurses. DBS is not effective without proper settings. There seems to be inadequate emphasis placed in training the medical professionals on this critically important phase of DBS therapy.
Thanks for weighing in on the conversation, johne! I appreciate you sharing your DBS experience with us. That’s great that your arm swing has returned to normal. I’m sorry to hear about your struggle to dial in the optimal settings! We have an article about the pros & cons of DBS (https://parkinsonsdisease.net/clinical/deep-brain-stimulation-pros-cons/) and the sometimes lengthy amount of time it can take is mentioned. Are your settings still getting adjusted now? – Chris, ParkinsonsDisease.net Team Member
Hi Johne. I had bilateral DBS surgery in April 2016. I also had great difficulty achieving optimal settings for about 6-8 months. I had almost weekly appointments until we were able to moderate the amount of stimulation and the medication. I was very sensitive to the combination of stimulation and medication. I am very lucky to have a very patient and compassionate doctor that I trust.
I agree with you regarding the need for proper training for the medical professionals but also education for the patient and establishing proper expectations following surgery.
If you have a Medtronic DBS system, I have met many of their medical professionals that work in the field and they are very open to feedback. I would suggest contacting Medtronic with your concerns/feedback. They also have a lot of resources for patients. Here is a link with more information: https://www.medtronicdbs.com/parkinsons-ongoing-therapy/index.htm
Regards, Kelly, ParkinsonsDisease,net Team Member
Two highly recommended books for prospective and current DBS patients. Life With A Battery Operated Brain by Jackie Hunt Christensen and DBS, A Patient Guide to Deep Brain Stimulation by Sierra M. Farris & Monique L. Giroux. I purchased both on Amazon. Great information in easy to understand writing and diagrams. I wish I had known about these publications prior to surgery. To KellyW, I did contact Medtronics and I must say they were not helpful, reluctant to answer questions. I understand Medtronics has lost a number of experienced employees to St. Judes. I missed an opportunity to have the new St. Judes system by one week. Thanks to all for your kind responses.
I am currently taking Madopar 3 times a day, Azilect 1mg of a morning and Sifrol 1.5mg(this was increased to this level today) which is also taken of a morning to see if it will help with the tremors. So far I haven’t noticed any side effects from any of the!