Hi I had DBS STN surgery in Jan 2019. I’m seeking others who have had the surgery to discuss their experiences, specifically the impact on medications, side effects, your experience. Also happy to chat with those who are considering the surgery. I’m in Brisbane. Cheers.
Welcome Dan A few people on the YOP-X working party have had DBS so I’ll get them to jump on in here. Thanks
Hi Dan, happy to chat - I had DBS Stan may 2019…
I’m a bit late to the party, I only just grabbed the app. I had my DBS put in in January this year
Welcome Drenai Let us know if there’s anything you’d like to see included in the app
Hi, im from brisbane & am considering DBS - have my initial consultation next month.
I have terrible side effects.
Hi Dookie Welcome to YOP-X. Have you been able to access much information about DBS? I’ll ask some of our young onset Parkinson’s reps who have had DBS to jump in on this topic.
No - ive only met one person who has had it - i would love to hear their expectations before surgery - the good & bad of everything.
I don’t have DBS but am interested about what people think incase I decide in the far future. Only been diagnosed recently but do have an identical twin sister who has had DBS in New Zealand but unfortunately doesn’t speak to me.
Id really love to know post dbs how much medication you were able to drop, perhaps if your pre-surgery expectations were met & if you wouldnt mind noting any worsening of symptoms. I do realize outcomes will be different for each person🌈
Would still love some info/thoughts etc from people who have had dbs.
Hi, I dropped about 70% medication - which has improved quality of life out of sight.
I found that anxiety was worse though I’ve worked my way through this pretty well with my psychiatrist.
For me I’d still do it again in a heartbeat, life is better now for sure - still hard and Parkinson’s still gives me the shits but I feel more in control of myself and my life.
Cheers Todd, my anxiety is huge anyways. Who was your surgeon?
Matthew MacDonald was my surgeon.
Hi Dookie. I’m in Ipswich I’m happy to help with questions and share my experience.
I am on almost the same amount of medication despite being assured, even twice since the op, that they would get me off the medications. I had a lot of difficultly until I went back to my original neurologist John O’Sullivan (brilliant-best doc ever) who put me straight back on Effexor and solved my problems overnight.
Side effect wise I have problems with speech. I get a stutter when meds wearing off which I never had before. Weight gain is the other 71,kg to 89. Which has me a bit worries but seems to have paused there.
Despite these few issues it has made a big difference and it was definately the right decision to have the op. $20+K out of my pocket hurt the most lol.
Hi Todd. Thanks mate. I’ve read your reply to another post, I’m envious of your decrease in meds. Is the 70% reduction you mentioned referring to the levadopa? I have anxiety also, Effexor helps with that. What are your days like, having any wearing off between sinamet/kinson dose?
Hi Dookie, great to see that others have jumped into the discussion. I’ve had a chat to our clinicians here who recommend involving 3 specialists in discussions around DBS. A Neuropsychiatrist to discuss any existing anxiety or depression, your Neurologist who can discuss potential medication reduction, and a Neurosurgeon who can outline expected outcomes. Interested to hear the experiences of others too Katie
Hard to pinpoint exactly impact of just DBS… reality is I stepped out of a stressful job which also allowed for more exercise too!
But effectively I was on daily Azilect and 4mg patches, + 4 times a day 400mg of levodopa, 200mg of entacapone, + nightly sinemet cr + 2mg melatonin for sleeping and of course all the vitamins…
Now I just take madopar 150mg 4 times a day + a slow release at night. + occasional clonazepam for muscle relaxant And escitolapram 10mg once a day for the anxiety…still take some vitamins when I remember especially vitamin d and magnesium
Off times are rare, but I find after about a month I need to change between programs on my DBS ( I have four programs at the moment) when I feel more symptomatic.
Definitely agree Katie! Add a good GP and neuropsychologist should be part of the lead up process
Did you get dyskenisia before dbs. My problems are all in my feet now exacerbated by 2 hip replacements - 6 mths ago i was playing golf 3 x a week. I have trouble with toes moving which appears to be an on state & then my toes clench. Im going backward & forward with meds which is driving dr osullivan crazy. I have a very small threshold for dyskenisia & up until xmas i was just on madopar & azilect but was underdosing. Im allergic to sulphites & am on my 3rd attempt on the patches - just at night atm. Comtan extends me but it causes insomnia & the dreams are pretty bad - i was sure someone was in my room last night. Symmetrel made me paranoid. Not sure if i should be on a slow release madopar at night but dr osullivan was going on holidays so he is sending an anxiety script - i already on mirtazapine. Im mourning exercise - it was my release.