Parkinson's Movement
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DBS Surgery

It has been one month since my DBS surgery - time for an update. I am now "in charge" of my regulator. This means that my neuro showed me how to change the amount of voltage is sent to each side of my brain. This allows me to increase or decrease depending on my symptoms. I was encouraged to substitute the voltage for medications, thus reducing the medications gradually. How do I feel right now? I have cut my meds back from using the patch, plus 3 extended release Sinemet, plus 12 regular Sinemet each day to 9 or 10 regular Sinemet. The "on" time has increased, plus my energy is up, so I find myself being more productive. It can take up to six months for the brain and body to heal from this surgery, so I must be patient, but the prospects are certainly exciting! Please feel free to ask questions about the surgery itself if you wish and I will answer them as I can. Because my brain is still healing, I am being careful about spending a lot of time at my computer. Have a great day!

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That all sounds very promising. Tnx for the update.

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Excellent start plus prudent plans.... sounds like a great beginning.

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My (new) PD Doc has recommended DBS so I am gathering info. Could you provide some detail about the process?

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Could you be more specific in your question please? Do you mean what tests or the surgery itself?

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How many visits to docs/hospital before surgery? How long in hospital for surgery and recovery? General or local anesthesia? How long was procedure? How many post surgical visits? How long to get it working right? Thanks.

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Jake - I will do my best to answer any questions! Each hospital/doctor might have different numbers of visits, but as I got within three months of my surgeries, my neuro had me come in to see him to plan the psych analysis, MRI and so forth a couple of times. The rep for Medtronics met with me to show me the regulator and educate me on how that worked. I was in the hospital two nights to make sure there was no infection. I was asleep for the placement of the halo and awake for the placement of the wires into my brain. My surgery took about 6-1/2 hours, but I have heard of upwards to 13 hours, depending on lots of different things. Each surgeon is different. My first post surgical visit was a week later to remove stitches/staples and turning on the regulator. Three weeks later I went in for a fine tuning the the regulator. It can take up to six months to get it all set, so you have to be patient, but I can tell you that at one month, I am self-regulating - which can be tedious. You must be patient - and it will pay off. For me, to not do the surgery was not an option! It meant eventual nursing home care - probably sooner than I care to think about. With the surgery, I am out and about as I was not before. That is not to say that I am doing jumping jacks, but after all, it is surgery on your brain, and that takes time to heal. I don't know how old you are, but I will tell you to get yourself into the best physical condition you can. Learn the risks and take them seriously, but for me, the surgery was not an option. I wanted to fight for a better life - and I will get it. Good luck to you!! Keep me posted on how you are. Cheers!

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Thank you very much. That was helpful. I am 75 and managing OK with meds, so I have a decision to make.

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Thank you so much for update!!!

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Dear annmariebaird,

I am so happy to that you finely wrote. I last heard from you on the day you went for surgery and I was a bit worried. Since my doctor recommended DBS for me I studied this and decided to do the surgery. I did MRI and next week have Neurologist and Neuro-Psychologist appointment. Than I will be given the date for surgery. Hope that soon you will able to get back to your life, stronger than before' with less tablets and less symptoms no "of" .

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Thank you for your kind note. Posting here has been a challenge for me, as I had year-end business to take care of for my bookkeeping business. I am so happy for you! I am stronger than pre-surgery by far and already starting to manage my Medtronic programmer. The surgery is not easy, but if you go into it with help post surgery for a couple of weeks, you should be fine. My daughter made plenty of food and made sure my freezer was full before I went in, and that helped immensely! My brain was very tired afterwards, but again, if you plan for that, you will work through it. I live alone, so stayed with my family for a couple of weeks before heading home alone. Are you going to be awake during the placement portion of the surgery? That was the hardest part, not because of any pain but it was a bit tedious. Let me know when you get your date! Exciting!

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If it's not too much for you can you explain about your brain was very tired? Yes I'm going to be awake for the placement of the electrode. The thought about it makes me worried and scared.

I am 65 and live with my husband for 45 years now. He is my best friend and I can lean on him. We have 3 grownup children that are devote to me. So you see in this area I'm more than fine.

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Think about going to a stimulating environment for an extended time without sleep. Nothing to worry about. Don't be afraid to be awake - it was boring more than anything else. You will do fine - you have your best friend at your side.. The most wonderful gift to me was that during recoup at my brother's, I met his oldest friend and we fell in love - an amazing adventure for an older, bald, skinny woman (he says I am beautiful!).. I would never have that if i hadn't trusted God to take care of me! Go forth and be an adventurer!!!

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Thank you for sharing with me !

we'll speck again soon.

get better and enjoy every day. You seem to me a person who depreciate life.

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sorryyyyyyy

I meant appreciate...

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Hi Annemarie

What country do you live in and how long have you had PD before you decided to get DBS... I can’t stand living like this anymore. I just saw your post and it gave me some hope . Can you please send me your email address I live in the US thanks

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I prefer to correspond through this format - privacy issues. These posts do come into my email, so it works. I also couldn't stand living "like this", and that is what pushed me to have the DBS. Hope is a wonderful thing! If you "follow" me - you can access all of my past and future posts. Take care! Annie

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