DBS surgery

[Sherry1960]

If you have had DBS surgery, share how long it took til you got the settings right to help with the PD symptoms. Thank you!

[NevJ]

Hi,

I had DBS in March 2019. It took about 6 months to get the settings to a level that my neurologist was happy with, but another 6 months before I started to feel significantly better. It’s not just a matter of getting the settings right, it can take your brain a while to adapt to your settings. Initially I wasn’t able to cut back on my medication, but was was able to cut medication by about 20% after one year, another 20% after 2 years and another 25% in June this year. After I had DBS I read a lot of posts online by people who felt an immediate improvement after surgery, which wasn’t particularly helpful. It’s important to know that everyone has a different experience with DBS and not to give up hope.

[Sherry1960 in reply to NevJ]

Thank you for replying to me. My MDS said the same place thing. I have had two appointments so far to check on my settings. I had my DBS in June. I had dystonia in both of my feet so that was the biggest motivator. I’ve had PD for almost 9 years. I was so ready for relief! It wasn’t a cake walk as you well know, but when you are prepared it makes it so much easier. Thank you again for your helpful insight and I am so happy for you on the medicine reduction’

[maungwin56]

Hi, My DBS was done in April this year. I am in Australia and the procedure is a bit different. In the states, it is done in three stages but here in Oz is all in one go. It took 7 hours for the whole procedure done. I was hospitalized two days before the surgery. On the morning of my surgery, had my head shaved and with the frame on my head took MRI and went to the theatre. I was like half awake , hearing my neurologist talking sometimes. then, in the afternoon about 4 p.m , I was in the recovery room. One night in the intensive care and after one week I was home. I felt so good after the surgery, feeling like everything has changed in my life. Later on, I found that it was because of the DBS was turned on already during the surgery with 2mV and I was taking 600mg of Kinson. then, after a few appointments, medicine was reduced to minimum 250 mg with a bit higher setting on DBS. Now, I am in the six months after DBS. So far so good, I can't complain. I can't walk very fast like before . ( that was very fast speed when the medication is 'ON" ) . apart from that, overall, I feel much better. No panic , can drive now. Sleep, sex life all come back. I had no pain for the whole procedure.

[Sherry1960]

Thank you. I appreciate your input. I had surgery to have the leads implanted. Three weeks later the communicator was implanted. It was turned on two weeks later by my MDS. I only had a few small area shaved. Still growing out. Lol. Like you I was half awake and remember bits and pieces of it. My feet hurt less now. Not perfect but I now take less medicine but like NevJ said it may take awhile for my brain to respond. My MDS has showed me how to increase or decrease settings. So it will take patience.

[masishere]

I had surgery march 2023 and stimulator implant/turned on Aprin 2023; nearly 3 months and there has been little improvement. From our studies most say it take up to a year for changes to start happening.