I am now just over two months out from my DBS surgery. At my last neuro appointment, the doc changed my meds from taking one 25/100 Sinemet every two hours to taking one 25/100 Sinemet and one extended release 25/100 Sinemet every three to four hours. He also wants me to increase my regulator each day so that my body will rely on the voltage rather than meds. Wow! My "med leash" is now three hours, sometimes longer. I am also waking up at 5:00 or 5:30 in the morning instead of 3:30. Energy also seems to be coming to me, as I now am driven to hiking, walking, running errands that seemed too difficult before the surgery.
Please understand that everyone's experience is different, but this is my experience. If I can answer any questions about my experience, please let me know.
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annmariebaird
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You should be a bit scared - it's the only brain you have. The question is - what are scared of? The question is - are you okay with your status quo? The question is - how strong willed are you? Where do you live? Do you have a good neurologist? How old are you physically and mentally? Talk to me. Annie
You could be a good candidate for Dbs if you are healthy. I overcame my fear by asking myself if I would rather live in a deteriorating state or take a risk and have the surgery and get better. I couldn't stand the thought of not having an active future so I chose the dbs. Does that help you?
I have a few questions and apologize if you answered them before:
1. How long was surgery and would they give you anything
to keep you calm during it if you wanted it?
2. How long after surgery did you have to wear the halo I think they call it the device around your head?
3. After surgery other than a terrible headache I imagine and while recovering (the period before they turn it on) are you your previous PD self just taking your meds or are they’re any initial side effects like speech trouble that go away?
4. I realize it’s only hair and will grow back but just wonder if it all has to be shaved ? It wouldn’t stop me from doing it just didn’t know how big an area they need.
5. I also wonder your thoughts about the psychological test, was it difficult, stressful ?
6. Any advise that you would give someone that you wish you had known that would have made the process easier ?
Although I’m not scheduled for it I certainly consider it, If I could meet you for a cup of tea these are some of the things I wonder about, It’s more than a few so answer only those you may want to. Thanks for sharing and being open to questions !
I am happy to answer your questions. It is my way of paying the surgery forward.
1. The surgery was about 6-1/2 hours long, and I was only awake for what seemed like a long time, but was probably only 1/2 hour. They did everything they could to answer any questions I had during this time and to make me comfortable. At no time was I in physical pain.. At one point I wasn't sure what they were doing and started to get frustrated, but they immediately had someone talk to me and get me comfortable about everything they were doing.
2. The halo comes off before you leave the operating room.
3. I never had any headache problems. I had some upper back and neck cramping, but that was due to the neck fusion I have. Solved that with a Tylenol and bag of ice. I did not take any pain meds! I will only say that this was my experience, don't know if anyone else had headaches. They watched me very close - I was in intensive care for two nights and they constantly queried me for my name, age, where I was, etc. to make sure I was not headed for any stroke problems. I was very impressed with the nursing staff and their monitoring of my condition.
4. My surgeon told me that the risk of infection is much greater if they do not shave your head. They gave me a "GI Jane haircut - not down to the scalp but leaving about 1/4 inch all over.
5. The psychological test is designed to find out if you can handle the surgery mentally - it was long and tedious and at times challenging, but I looked at it as their way of knowing your mental capabilities.
6. I had very high expectations (gleaned from other folks who posted how "easy" it was). Looking back, it wasn't easy but I would do it again in a heartbeat. Be sure you have help at home, as your brain will act like you have been on a bit of a bender and you will want to be waited on for a couple of weeks at least.
I hope this tea time has been helpful. I am so grateful to the team of doctors and nurses that helped me through the surgery. I try not to sugar coat any of my experiences.
I will also tell you that I know my body intimately - when I take a med, I tune in to all reactions. That is so important in this journey, as doctors tend to throw a lot of meds our way and I don't ever take their word on how wonderful they are. I start out with one pill at a time and figure out what that is going to do to me. I am also a vegan and do not eat anything with sugar (except perhaps a small chocolate milkshake once in a while) and I don't drink caffeine or alcohol. Other than Parkinsons, I consider myself an extremely healthy person. I will say that I am a very strong-willed woman and once I decide I am going to accomplish something - get back Jack! You are asking all of the right questions, and if you think of more, don't hesitate to ask.
Thank you so much! I enjoyed our tea time! Just a couple follow up questions:
1. When you mention you were only awake for a half hour, were you given general anesthesia?
2. When I’m stressed or anxious my meds don’t work as well ,does DBS help with that, in a sense bypass the stress signals and allow the meds to kick in ?
Thanks again Annmarie as I don’t personally know anyone who has had it, so happy to hear of your successful outcome !!😊
I had general anesthesia and in the middle of the surgery was allowed to wake up so they could have me do specific movements to see if the placement was correct. I think that is pretty common with DBS.
I think stress crosses over even with the DBS - I would imagine it is because of the adrenaline that is released - guessing here.
Feel free to ask any other questions you may have.
I too am thinking about DBS surgery,but really scared of a stroke or worse. Where are you going to have your surgery? Maybe you live near me and we can get together too like you and Annmariebaird. I live in Mount vernon, Wa.
I am thinking about this surgery for my Parkinson tremor. I only have a tremor in my right arm,but have had to increase Sinamet to 12 tabs a day and Pramipexole 4 times a day. I am so fearful something will go wrong. How do you overcome the fear?
I decided that knowing where my Parkinsons was going without surgery was more fearful than all of the good that could come from having the surgery. Fear of the known overcame fear of the unknown. It simply became unacceptable that I was going to be a prisoner of my recliner. Simple as that!
It is not easy. Making no mistake that it is one of the hardest things I've ever done. For me the decision to go made it easier for me because I knew there was no other option. I did not want to grow old sitting in my chair. I wish you good luck and hope it all goes well for you if you decide to go for it
I am so proud of you. You've made the decision to take your life and turned it into a productive experience. Keep yourself extremely healthy in every way. If I can help you through my experiences please let me know. Wow! Please post your experiences those coming behind you and take heart. Good job!
I trusted my neurologist. If you don't, you have the wrong doctor. He needs to be comfortable with the surgeon, as he takes over as soon as the surgery is over.
Yes. This will likely change during the next few months as I move the stimulation up. It can take up to a year to find what works for each individual. I feel I have made great progress.
I'm inspired by you & your experience, thank you so much for sharing. It will empower others to make an informed decision when being pressed by their Neuro to undertake DBS.
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