Its been a long drawn out process but I will be having my DBS surgery in two weeks on 31st December. So if all goes well I'll be starting next year all wired up and by February ready to go.Just a few quick questions.
The surgeon tells me that I should be ready to walk out the next day. For those who have had the procedure, what was your experience of being discharged? And did you really do nothing for 2 weeks after the operation?
Also, how soon were you able to go back to work and how soon were you driving again.?
One more question. Did you manage to reduce your medication? I'm especially interested in getting off Amantadine.
Thanks for any help.
John
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gingerj
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They’re a bit obsessed with drug lessening Ginge and seem to want you to take the minimum afterwards. I tend to make up the shortfall using Mucuna. It’s quite hard waiting for switch on. I never went back to work: standing in front of 30 teenagers and trying to get them to jump hoops just wasn’t going to happen. Maybe as a postman you’ll find it feasible? Driving has never really been an issue for me.
Hj Jeeves, I hope they are as keen to reduce my meds, as long as the difference is made up for by the DBS.Ive never tried mucuna but think if it works, then it gives an extra flexibility when combating the PD.
Regarding standing before a class full of kids, I wouldn't be going back either. I seem to struggle with my words just talking directly to one person.
Alright mate. As far as I understand it the DBS takes about 50% of the symptoms away and you then have to mop up the rest with meds. The Mucuna comes in capsule form and I find that the odd 500 g smoothes over some of the med transitions. My speech was quite affected from the surgery and so they created a speech channel. It’s ok but I have to alter the program every time I intend to talk to someone for a long time. It removes power from the body effects unfortunately but it’s a compromise.
I only take c/l and have not reduced it yet, but it’s not even a month since I started programming. I walked after they wheeled me to the door with my husband’s assistance. I wasn’t driving before the surgery and still am not. Maybe I will again. And I work part time from home so not sure if that applies. Best of luck with your procedure!
Gingerj, I had DBS in July2024. In the first two weeks or so you feel great and I took NO Syndopa Plus. I was on six tablets a day before the surgey! But then the stupid brain adapts to the currents and slowly the symptoms (in my case it was intense off period after 3-3.5 hour of taking Syndopa) reappear although with lesser intensity. Yes, you should reduce medication. i am on 2.5 tablets (1/2 tablet 5 times) and able to work although not drive.
Don't expect magic from DBS as I felt the doctor's paint an overoptimistic picture and set our expectation from DBS very high. Post DBS the main challenge is to strike the right balance between voltage applied, medication and your physiotherapy. That can take 6 months to settle down and you may have to visit your neurologist to reprogram the device every 4-6 weeks.
All the best and I wish you speedy recovery post DBS.
Glad you are having DBS surgery—- if you and the Dr feel it’s the right decision. My husband just finished the 2nd stage and is doing well.
Letting the brain, muscles, and brain components heal does take time but prayerfully when you have the staples or stitches out after the battery pack and lead are inserted and connected— that’s stage 2– and after your body heals from that 4-6 weeks, and you go back for a follow up with the surgeon will switch the battery on— but no stimulation. Just to let the brain get used to the “lead” and the electrical current.
Then 4-6 weeks later your Neurologist will then work with the settings to get you to a”sweet spot “ to reduce meds.
Amantadine— my husband has been on it for quite a while. Supposedly it helps with Dyskensia and head drop— not sure it does a good job, but when my husband tried to titrate off— he found out it was indeed helping some.
Changing meds or supplements after DBS surgery? I’m not sure that would be wise. Imho. Your Dr knows your system and the meds that are and aren’t working. If you’re having a particular rough time, discuss it.
Surgeon’s policy for hospital stay after surgery? Depends on Dr— you’ll need aCT scan to detect any been bleeds due to surgery, but at least 1 night is a good suggestion.
You will need to start your meds right after surgery, and you need an advocate to make sure meds are there and given on time AND to stay with you. That first night you need someone with you to be your voice and eyes and ears to the Nurses for dosage.
If you have the Aware in Care Kit or the newer version, it gives what and what not to let the nurses give you, and great ideas to keep things going smoothly.
My husband didn’t have any pain after any of the surgeries and very little bleeding.
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