I had DBS surgery on Tuesday 12/17/24 and so far it has been the right decision. I contemplated the decision for several years and after I suddenly started going downhill after 20 yrs diagnosis and my neurologist said I was still a good candidate, I decided to go for it. When I trying to make the decision someone said, what choice do you have? They were right, it wasn’t going to get any better. So that’s when I made the big decision. I took the tests that needed to be done and talked to the surgeon and decided to go for it . The hospital had just lost a surgeon and we’re down to only one. They had hired two new surgeons and they said I could change my surgery date from late June to December if I went with one of the new surgeons. I asked to meet with him before I made a decision. I met with him and felt comfortable. He was an MIT and Stanford grad so I thought he must know something about DBS so I made the decision to go for it. My surgery was this last Tuesday 12/17/24 and as of today i couldn’t be happier. Besides a bad headache from the halo and a little pain from the incision from the battery, I believe I had a successful surgery.
The day of surgery I was a nervous wreck. I heard all kinds of stories but everyone is different so what would my journey be like? (to be continued I need to rest a few minutes). 😀🥊
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Congratulations. Like you I felt I had no other options, but overall I am happy with my decision. It’s been a little rocky with the programming but I am making progress. Best of luck to you with the next phase!
I m the same with you. But I have an infection after the 1st surgery, they have to cleanup my right dbs. So they managed to cleanup the right dbs and repatched my dbs insertion. Now, I am cleared of the infection and i have to adapt to the new dbs settings now. Hope to get through this dbs settings in order to start work again.
Hi pdpatient, I m not diabetic. I have the infection cos the 1st dbs surgery, I have surgery around end of June. My wound did not heal well after the surgery, I was readmitted due to the wound and I developed a fever right after that.There are 2 types of bacteria which I have after the blood test. 1st bacteria is a normal acne bacteria, 2nd bacteria needed Iv type of antibiotics...
Congrats on taking the plunge and it being successful. I am in the same boat LL, where I am declining and have thought about dbs, fus and the Vyalet pump with subcutaneous levadopa delivery. I was wondering if you considered the other two I mentioned and your thought process on that.
Hoping your quality of life improves for a long, enjoyable future. Keep us in the loop if you are up for it.
I will keep you informed. I can’t keep any promises but I thought I would try & do a daily and/ or weekly thing just to keep all of you informed on what the journey is like.
Tuesday was a good day as far as tremors. I had basically zero. Wednesday they came back but not as bad as they were before the surgery. I started taking my meds again. Thursday I had to take them every 3 hours which is normal. Overall I’m feeling good. I would never guess I just had brain surgery 4 days ago. I had a headache the first couple of days, I think from the halo and the pain pills took care of that and the battery pack is a little area is a little sore but as of right now I feel really good . The doctor told me what helped is that I was healthy and strong before the surgery. I think that’s what brings Rock Steady into the story. It helped me to fight this monster with all the power I could. So I think if you have the feeling of fight in you , you’ll be ok with going through this next step. Keep fighting! What other choices do you have.
Someone asked if I had considered FUS and/or I think it was croxent (sp?). I did think about them but I haven’t heard too many favorable things about them and they are expensive. (To be continued)
I did FUS GPI as part of a research study in 2016. It only lasted around four months. I have been waiting for the pump for four years and I just ran out of time. I looked into the Duopa pump but felt it was too invasive. I swore years ago that I would never have DBS.Just goes to show, never say never. I am happy to have gotten the DBS. I will keep the pump as an option for the future. Hopefully they will make the pump a bit smaller in the future and figure out a way around the cannula having to be changed every other day. I don’t understand how there can be diabetes pumps the size of a flip phone yet our pump is huge and unwieldy . I see my MDS next week for the First time since the surgery; I plan on ask her about Crexont although I tried rytary early on and it did not work for me.
Hi Julie, thanks for sharing your story, glad you are doing well! Curious why they recommended GPI versus thalamus for your FUS? Where did you have it done?
Understood. What symptoms were you trying to address with FUS? GPi isn’t normally recommended for tremors so I was wondering what they were hoping to achieve.
Great to hear a good report. Been in early discussion of DBS for myself so very keen to hear how others have got on. Good you are having a rest and taking it easy after brain surgery. Wishing you well with great continued success and I'll watch out for updates.
Very helpful information, thank you. Did you get the electrode implants done and the battery/transmitter pack in the same day? How’s your progress with the programming?
Juliegrace is the first one I read about that got the battery/transmitter done only 5 days after the electrodes were implanted. Since travel is an issue for me, it would be very helpful to have them done at the same time.
I expect to learn this coming Monday or Tuesday about my surgery date.
Perhaps recovery is easier from1 procdure. Less risk of infection. If the 1st procedure becomes infected, there is a risk of bacteria migrating along the wires to the controller. Less time anesthetized. And, probably other reasons.
thank you for posting this. Your position is much like mine. I have started the process but understand that it may take up to a year or more. I have come to the conclusion that I have no other options ….Parkinson’s is insidious. I’m 69. My brother, with PD, is 90, and we lost our sister 3 ya ago at age 86 from PD.
Agate_17 I am actually curious about your story. How was your sister's life before she passed away and how many years did she have Parkinson's? Peace be on her soul.
How is your brother doing now, and how many years has he had Parkinson's? How is his quality of life?
I am not sure if you intended to highlight the positive aspects of life experiences so as to give hope to those of us who are YOPD. The common perception is that a long life after Parkinson's is a torture, so any insights would be extremely valuable.
My mom has PD, As did one of her brothers. He died a few years ago, but not from PD related causes although it certainly didn’t help his situation . My mom has had it for about 26 years along with a plethora of other issues at 89. My PD which I’ve had for 16 years, since in my late 40s is much worse than hers.
Congrats on making the decision and following through. I had DBS surgery in early November 2024 (2 surgeries about 5 days apart). The leads were placed first the implant placed next. I just went for my first programming December 20th @ 2pm. I had to be off my meds for 12 hours before and that was tough. When my MDS switched on the stimulator, it was like I was a new person who had control of their body. I had to contact the Medtronic tech as my controller needed to be reset. Once that was done I have a window in which I can turn the stimulation up or down up to .3 units. I had been taking 3 Rytary 145mg every 5 hours and now take 2 tablets every 5 hours. I slept through my 1am dose last night with no issues. I am hoping to reduce my dose to 1 tablet every 5 hours.
They did my stimulater at the same time because my surgeon would be on vacations and it would have been on Christmas Eve. I was so happy. I got it all done in one sweep.
May I know what was the left setting n right settings.. I still have to take 1/2 madopar 125 mg every 3 hrly from 7am till 10 pm at night. For the 1am n 4am dose, i m taking 1/4 in order to sleep.
So happy for you! I had my DBS surgery in June 2023 after several years of painful dystonia in my feet. It was a huge blessing to have that alleviated!
I just felt more tired and stiff. My tremors were getting worse, my “on” time was a lot less. So I just felt like I needed to do something or I wasn’t going to be able to get around without assistance because I was starting to become slower and slower. 🥊
Today is the 26th of December and things are still going well. This must be my “honeymoon “ period. So far, I take meds and they start working about 20 minutes later and I take them every 3 - 4 hrs. right before my meds are due. Seems so easy. 🥊😊
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