How did you make the decision to proceed with DBS? What was your experience with the procedure like? How was your recovery? Did you experience significant improvement in your symptoms? What do you wish you had known prior to DBS? What advice would you offer to someone currently considering DBS?
I had DBS in October 2014 after a 12 year diagnosis with dystonia and early onset Parkinson's. The pain relief from the dystonia was insant. I am still getting "tuned" to work out some other issues. There was significant improvement in other symptoms, though. Movement was restored, no more masked face, hand movements returned ( I'm half Italian and always talked with my hands until diagnosed). I could roll over in bed, and get up and down with ease. I wish I had more of a support system in place. I thought I did, but didn't realize it was going to be so difficult to get tuned up. I felt like I was out here in the middle of nowhere with no one that could help me. Eventhough the improvements were phenomenal, there were times I regretted having it done, because I felt so alone. But things are improving after finding that depression can be seriously affected(and was) by DBS. I even sent an email to MEdtronic during one of my rages, that if they are going to promote this surgery, they need to have more people trained and in place who are able to program. But, I am now in contact with a knowlegable team and things are back on track.
I had DBS a month and a half ago. I’ve been having problems with falling to the left side. It just kind of happens and I don’t seem to be able to catch myself. I am not on any medication at this time. I was on 14 pills a day off of the pride Tyree that should be RYTARY. I have been off work now for almost a month. I was so tired I wanted to sit down and every chair I saw. That is so uncommon for me, because I’m always on the go. Still having a few tremors in the left-hand. Still working with the neurosurgeon on programming my DBS. It seems, however, that is soon as they turned the other side of the DBS system on, that’s when I started falling. It also seems, that when I did mention it to the neurosurgeon, that I was ignoring, will have to try with the nurse practitioner when I see her for tuning in a month. Good luck to you with your devious. I hope it works. I will say, as soon as they did to her in the DVR system on, I got a straight 14 hours of sleep the first night and 11 the second night. What a relief to finally get some sleep.
@jaguarslimJust read about your DBS experience. How are you doing today?
@A MyParkinsonsTeam Member My brother had an easier time than your experience and I am concerned that perhaps the sudden no more Rytary was too quick for the body to adjust. I have gait and imbalance issues and have not been approached by my neurologist about DBS as a treatment. Well my neurologist always tells me Hang in There! And I prefer a more loud declaration to your neurologist to Help this patient Now! Remember the words to the song oops forget the title " I Am Woman. I AM INVINCIBLE!" It took my brother a good bit of tweaking before they got it right. His falls have been a result of standing up too quickly and dehydration. Orthostatic hypotension I think is the term. Compression hose ishelpful for him. Doctor has to prescribe these. Make sure you ask your nurse practitioner to put you through the simple steps of taking blood pressure several times as you lie down and get up etcetera. Keep MPT posted on your progress.