Cool! The Medtronics guy was in the op room. So my surgeon talked me out of the 2 rechargeable packs and advised me with 1 larger pack but implanted in the abdominal area and not below the collarbone.

I was awake during the 9 screws (but no head frame), the electrodes positioning, and the scalp stapling. But thankfully I went under during the skull drilling!

I hope these details don't scare anyone off DBS. Because I wouldn't even consider it 2 years ago. It takes an average of 18 months of deciding before going for it. You'll know when you are ready. You will hit the wall and I don't mean literally. Peace came over me when I said OK and then I had no fears or worries about it.

Have a wonderful Easter!

Have there been any studies that track how DBS recipients do 2-5 yrs after the procedure compared to others who did not have the procedure?

Very good question. There has been at least 1 study that has been done on dbs vs bmt (Best Medical Therapy). One by the Va Office of Research and Development in 2009 of 316 patients with results posted in 2013 in the JAMA.
Results:
"In this randomized controlled trial of patients with advanced PD, deep brain stimulation was more effective than best medical therapy in improving on time without troubling dyskinesias, motor function, and quality of life at 6 months, but was associated with an increased risk of serious adverse events." This makes sense as usually meds are reduced by DBS and QOL increases.
The "serious adverse events" would mean stroke, infection, and bleeding during DBS.

It has been said that QOL can be improved at least 10 years or more after DBS.

As I recall, the first stage prior to surgery was to meet my new MDS/programmer, for an examination, and questions about symptoms..I do not recall whether or not I was required to be on or off..But I do recall going there off meds for about 6 hours after I woke up..I go to bed in off condition, so if I were to count that it would be about another 8 -10 hours..After an examination he asked me to take my meds, and waited to see how long they took kick in, and to see how bad the dyskinesia was, and another examination when I was instructed to be in on condition..That was a long day, and I was trashed at the end of it..It is a 68 mile commute to Boston from here, and the traffic is so bad during the rush hour, and hour and 15 minute commute could turn into 3 hours..Then they had me come in for the psych evaluation..I came in on meds, and a psych nurse spent about two hours with me asking all kinds of questions..Remember these 5 words, and in 15 minutes I am going to ask you to tell me what they were..Count backward 7-100..7-93..7-86, etc, and all kinds of other stuff..Then I came in for an MRI, to find and target problem areas in the brain, and to see what going on up there..Then come the day of surgery..Some folks here had good painless experiences..That was not the case with me..After they shaved my head, the next step was to put the halo brace on..This was brutal..They gave me 14 injections in my skull of I think Lidocaine?..Novacaine?..Whatever..This woman was in the learning process, and was being instructed by an anestetic specialist where to place the injections, and how to administer the injections..She stuck the needle down to my skull bone, and backed off a little bit, and inject..It hurt like hell until after she injected the numbing agent, but it didn't matter cuz, most of the pain had already been felt when she stuck the needle in my head


Then the placement of the halo brace..There were 4 screws with sharp points on them, and two screws with pads on them..Those went into the ears to center the brace..That Dr screwed those things so tight into my ears that I thought my head was gonna pop, and Im telling him to back those screws off and he said, “don't worry this won't take long”..Now he starts screwing in the screws that secure the brace, and in a couple of spots my scalp wasn't numb enough, so here comes that needle again..Finally he got all the screws in, and he loosend up those pads in my ears..He waited a few minutes and then he grabbed a hold of that halo and started yanking on it like a football player, and then he bolted it to the bed..My head was on a bit of a downward angle, and it was uncomfortable..They had stuck a picc line in my arm in incase I needed to be sedated..I never got a drop of it..The drilling didn't bother me much..It was the noise the drill bit made, and the sound of the thing grinding into my skull, and the feeling of him wiggling the drill bit out of my skull..That was when I realized, this is really happening


To me it was a grueling process that wears you out and drains you mentally..They asked me if I wanted to stop halfway through, and come back another day..I though to myself, no f-ing way are they putting that halo brace on me again!!..SoI told them to continue..I also told them I didn't care what it was going to take to tough this out, and get it done today, I was willing to do whatever it took..I didn't know that the leads were in my brain until they told me..Didn't feel a thing..Then they stapled me up and I was done..19 staples on each side, which wasn't bad


So, there were some parts of the procedure that were not exactly pleasant, but I got through it, and it was worth ever minute of the surgery, for better or for worse, because it was very successful, and I got my life back..Not everyting is perfect, but I am miles away where I was from prior to surgery..I would do it again if I had to

Steve, I don't think I could have said it better myself. I had too had a very similar experience during my DBS except for the incompetent nurse with the lidocaine needle. Oh yes!! I remember the drill!! the pain of them going into my head makes a root canal a blessing!!!

The whole process seems barbaric and that is probably why it takes some of us a long time before we consider it. BUT if you ask any of us if we'd go thru it again the answer would be yes. Because to live without SOME if not ALL of the symptoms is such a relief! I had my DBS done at a teaching hospital and that means some are students. That explains why I didn't wake up until 36 hrs later!! Luckily my dr is good at programming as I have very stubborn tremors and it took 2 hrs to find the right setting. What a relief! I'm 90% there but it is enough to grant me a new lease on life! I go back next week for fine tuning. I have to retrain my muscle memory to not tense up and to tremor. After 10 Years of it- not easy.
That is great that you feel better!!

Yes sometimes I feel like being truthful about the surgery will chase people away..But the real truth is, anybody can get through it..If I can do it, anyone can do it..You have the option of being sedated, or asleep..I went through the whole thing wide awake, and even though there were uncomfortable moments, there was no way that I could go from frustrating misery, to freedom and happiness..My surgery took about 4 1/2 hours..Prep may have took an hour..And after its over, it is over..Find a surgeon that has a good reputation..My surgeon has done over 1,000 surgeries, with some great results..So I trusted him enough to put the surgery in his hands..I would be lying if I said that I wasn't free of fear, but the fear was a knee jerk reaction to a reasonable concern

If you are sick and tired of the misery of
pd, then I strongly suggest that you consider this surgery..Looking back at the whole thing I will tell you what I am really afraid of..Living the way I was, telling my self lies, and justifications..For example..This is the price I have to pay because I have pd..After the dyskinesia,stops and my meds kick in, I will be fine..Such a bluffing of one's self..I knew that I had passed the crossroads of freedom and into the grip of pd's control..You know what I was really afraid of?..Getting up one morning and not being able to get out of bed to make it to the coffee pot, and I knew that day was getting closer..Now THAT is something to be afraid of

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