Were you taking Rotary before the operation. I never tried it although I tried just about everything else the last 23 years. Before the operation I was frozen every three hours after taking meds. Now I can move but take a 50/200 er every four hours. I feel the old me creeping back in the difference being I can move all the time. I am beginning to wonder if the meds are still adversely effecting me.

Is there a website for people who have had DBS. My next adjustment is in mid January but I can raise or lower the voltage a little as needed. thanks

National Parkinson Foundation Parkinson.org has a forum for DBS.

Thankfully in Austin, TX we have a "DBS support group" that meets monthly. Went last week, small turn out due to Holidays but glad I went.

Six weeks out after surgery. Honeymoon period has warn off, adjusting to the new me. Left hand ZERO tremor, right hand is very stable tremor at times.

Dystonia no longer an issue. Have not had any foot dragging or freezing (!!!). I can button a dress shirt on a bad day.

Currently at much reduced medication. My "on/off" transition is very mild (amazing).

Long journey to go, so far all it good. I was feeling too good and returned to exercising too soon. Brain swelling is real, so take it easy for six to eight weeks after brain surgery.

I'm 12 days post Stage III surgery (Vanderbilt ) with a couple questions. I was warned about stiffness in the neck but this feels worse than I thought might hit me. So, has anyone else experienced a stiff and tight neck after neurotransmitter insertion, from the extension lead having scar tissue build around it? I move my neck around frequently. When I get up I can turn my neck a full 90 degrees to the right, but to the left I might be able to get 60. What did you do? What was your outcome (positive I hope)? Sent surgeon pics, he thought it would resolve itself basically but repeat pictures next week.
Thoughts? Comments?
Merry Christmas from the hills of East Tennessee!

Scott - I don't recall any significant problems with neck stiffness,
so it may have been that it has subsided since surgery or it hasn't
been a problem to being with (lead insertion on 10/13).

I went to the chiropractor for the 1st time this week because of
lower back problems and the Doc whipped my neck around just
like old times....

My wires go down the left side of the back of my neck. My battery is under my left pec. I had the whole thing done in one day. The only problem I had was that they had to open up a space to work behind my left ear and after that would hurt like hell at times. That was when pain killers became good friends.
They did tell me that some people have trouble with the wires in the neck. Mine are a little sore still if I press on them but otherwise they never hurt. It's all less with the passage of time. (had mine 10/13 also)

My problem still is the effect that the old meds have on me. I am still taking 4 50/200 ER sinemet every day and they make my legs ache in the muscles. I can walk thanks to the DBS but I still have the feeling of dystonia still lurking.
I think food still effects me like before. I understand that DBS does not fix that.

I'm about 8 weeks out (Surgery 10/26; battery 11/2; programming started 11/9). Brain swelling can come down, but have dropped to 1/3 of my medications. Too little or too much caused stiffness, so quite happy to be on three 25/100 during the day. One 50/200 ER at night.

Battery location (pec), cable on left side of my neck. Best medicine is a great Massage Therapist. I've always had Dystonia issues, but really helps to get those knots out.

That's really interesting. I will ask the Doc during the 'adjustment' appt.
if I can DEFINITELY still see a chiropractor. I also couldn't believe what I
was hearing when I brought it up previously.

Once again, food seems to be the biggest challenge. I have gone back and
forth, desperate to find a combo that works. After the last change to 2.5,
I seemed OK, not great, taking the single 23.75 in the morning as well as
one at night. I'm still trying to get back to that after 'falling off the wagon'
last week and reverting to 5 (total) per day. But, last week I did have a
legitimate excuse, my mother was near death, with severe dementia. They
explained to me that they can program out much if not most of tremor, but
when it comes to high stress scenarios like the above, there is just so much
they can do. That makes sense to me. And even then I was at less than a 1/3 of the regimen before DBS. So, no, I will NEVER complain about that, or anything else that is part of the DBS experience, so far.

If somehow I can make the total of 2 work again, I really think it could be
a key for eliminating the overall food complications. My reasoning is one
capsule early, say 8 or 8:30, and one at bedtime, should allow me to eat
starting at 9 and on throughout the day, as long as DBS is adequately
doing it's thing. And by the time I take the 2nd capsule as I get ready for
bed, I will hopefully be asleep before the other complications return.

I will be ready to try 3, then 4, soon if the 2 'plan' fails me. NO complaints

That's interesting, I was told no neck adjustments.

Yes, I was taking Rytary before DBS, but found it nearly impossible to use. The interaction with alcohol (half a beer) felt like it was putting me into a coma, and the interaction with food was hopeless.

I try to get to the blog every other day. If you need anything else let me know.