Hi All. I had DBS in August. I am trying to be patient with the process. I am still unsure what one's typical experiences are in that first year. can anyone share their experience- the good and the bad and what to expect months after the surgery. At one point did you reach the point of having the maximum benefit from the surgery. Thanks!
Hi Shirley. Sounds like you had a rough time much like me. Glad there are some more even results for you. Did your walking get worse after the surgery? I too have the walking issues as my main problem. My meds are down to 2 pills - nice you are on no meds. Are you doing PT for the walking or how are you managing that? I cannot walk unaccompanied. Really lost my independence. This was all much tougher than I think we expected. Hoping for continued improvement for you. Take care.
First let me say that my results are NOT typical. I had DBS in Oct 2015. Before surgery I walked with a cane and suffered from random gravity checks to the point that my Neuro would ask how often I fell in the last 6 months, to which I replied "with or without drawing blood". Since DBS I no longer need the cane to walk, my meds have been dramatically reduced. I don't have knots in the muscles in my neck and legs. My balance issues were caused by the meds (dyskinesia). Now we are fine tuning me to get that sweet spot of max benefit from the device
I had DBS done in June with exceptional results. No more stiffness, hesitation, problems walking during the night, getting on and off the bed. Basically its been a game changer. Very happy with results. Don't know how long until I will be able to cut down meds or will PD symptoms get worse. Right now enjoying new found quality of life.
My husband has had 3 DBS surgeries. The first in 2002 which was very successful. His second one a year later caused him to have seizures and headaches. He had that one replaced by a different hospital. He was back on course. It has been a blessing and he has a way to go on his DBS settings. Still takes meds though.
Hi Chimmy
Yeah I'm that guy. I'm sorry you're not getting better results, it may take longer to get the desired results. Remember the DBS has thousands of settings. Out of curiosity, has your Neuro switched contacts. There are 11 contacts om each lead. We've had to switch contacts after I was getting good results but the pad on my thumb of my right hand went numb. Sending prayers...