DBS

[michaela13]

For those who have had dbs and had no tremor, how did the surgery help? In what ways? Did it affect swallowing, speech, walking, medication?

[etterus]

I have had DBS in 12-14 and was a PIGD(postural instability gait disorder) or non tremor PWP. I previously had great difficulty with dystonia and dyskinesias. Dyskinesias were worse during the day while dystonia was at night. I was also suffering from urinary urgency-uringency!- which was a nightmare in that I would wake up in a panic to get to the bathroom but had to crawl due to foot muscle spasms 4-5 x a night. this is all now history.

I still need to take c-l dopa every 2 hrs and when I awake at night which is 1-2 times. I also have some difficulty with gait when off but it is markedly better... most people don't recognize it.

I have had only 2 programming sessions and will probably have 2-3 more over the next 4-6 months.

I have less swallowing and voice issues. Everyone says I'm much easier to understand.

My target site was the Globus Pallidus Internus vs the subthalamic nucleas. You should talk to your surgeon about the 2 different sites. Is there a team of Psychologists, MDS and surgeons? Who will do the programming? These are important ??'s to ask to ensure good results.

In a nutshell.... I would do it again in a heartbeat. I don't know why I waited so long.

I also would confirm the procedure with another opinion or 2 if possible. GOOD LUCK

[michaela13 in reply to etterus]

Thank you!

[movinngroovin in reply to michaela13]

I too love my DBS-now that it is tuned properly. I have virtually no tremor, rigidity is minimal, my writing has improved. I also go daily to the gym which helps a lot too. It has been a real miracle for my life--PD for 18 years.

[bdbeveers2264 in reply to movinngroovin]

Have had Parkinson for 8 years had DBS impLANTED 1 YEAR ago.

am seeing a tuning expert next week...Hope for good rsults..they

fail to tell you how important the DBS tuning is...

[movinngroovin]

Sure do...

[Donzim]

My husband was screened for DBS at Shands in Florida, one of the foremost hospitals doing this treatment. We were told that they can only deal with the location of the brain which regulates tremor. They had not at that time,3 yrs ago, perfected the area regulating gait so he was turned down as gait was his major problem. They said they do a lot of corrective work on people who were promised more success than could be delivered. They did expect, however, that they would locate this part of the brain and have future success. Just be sure your doctors really know what they are doing...go to one of the teaching hospitals known for it and get a second opinion along with their statistics on success for your particular symptoms.