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DBS

A MyParkinsonsTeam Member asked a question 💭
Swanhill

Hi l need some help my Neurologist said l can have DBS done but lm so scared to have it done as you are only sedated, so lm not sure l can handle that knowing what they are doing should l go ahead ive had PD for 7 year and take 1 and a half sinement every 1.5 hours

June 30, 2018
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A MyParkinsonsTeam Member

I’m anemic but iron pills constipate me so I don’t take them. One A Day plus iron may be a good answer.

July 7, 2018
A MyParkinsonsTeam Member

What do you mean the rt had 3 surgeries & the lt had 2? This doesn't get done all at once? What happens in between? How much time in between? Are you hospitalized until the whole thing is done?
Sorry for so many questions. My husband is thinking of having it done. He has had PD for 15 yrs & his meds no longer work long enough. He is 55 yrs old & basically can't do a thing. Thank you for any info you can share. I really appreciate it.
Lee

July 6, 2018
A MyParkinsonsTeam Member

Best thing I did! It's not for everyone but I had to do it. My quality of life was nil. I couldn't move without meds. I was taking 15 Rytary a day. 3 every 3 1/2 hrs. I stopped eating and the Dyskenesia was horrible. Right side done in 3 surgeries end of Feb and left side in 2 end of April. I have my life back. Surgeries were easy. The hardest part was waiting for my body and brain to work together and get down to 4 caps a day 1 every 5 hours. Been feeling good since early June. The Dyskenesia disappeared right away. The tiredness took longer.

July 5, 2018
A MyParkinsonsTeam Member

I, too, have wondered about DBS for my spouse. He has had PD for 12 yrs and he is only 54 yrs old. His meds are not working anymore. He is always running out before time is up for renewal. He is going thru the VA and they always give him enough to get him through. Although they admonish him for taking too many! But I'm glad they give it to him. He had a different neurologist that was not associated with the VA and she thought he would be a great candidate for DBS. Of course he balked at it, so we did a lot of researching. He still will not do it. He is afraid of doctors poking around in his brain (which I don't blame him). He asked a doctor at the VA, whom was not a neurologist, and he said not to do DBS, but didn't give any logical reason why not. We are totally confused and just a mess! I'm trying to find someone in the Tampa area, or even in the state of FL, that has had it done that wouldn't mind sharing their experience with him. If there is anyone out there please email me. (Email address can only be seen by the question and answer creators) I hope its ok to put my email out there??
Thanks for listening! Happy 4th

July 4, 2018
A MyParkinsonsTeam Member

Has anyone in Minnesota had DBS done and if so where did you have it done. My VA Nuerologist said There are only 4 VA Hospitals who specialize in it and they would send me to San Francisco but would go outside of VA if I could get it done closer to home.

July 4, 2018

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