Hi everyone..It has been a long time since I have posted here..I hope you are all doing the best you can

I had DBS surgery on Nov 5, 2015 because I had wild dyskinesia, and I decided that enough was enough..I had plenty of the classic symptoms as well..Freezing, bad balance, falling down etc..No tremors


I had the surgery done at Beth Israel in Boston..I couldn't haved asked for a better team of Doctors..I had a meeting with my MDS/programmer, and my neurosurgeon prior to surgery..They both told me what to expect..They said they could do something with the dyskinesia but that was it..They said that I wasn't a great candidate, but that I was a good candidate


After surgery I had a profound micro lesion effect..Most of my symptoms were either gone or improved..This lasted about 6 weeks..Some of the symptoms came back, but a lot more manageable than they were before..However my wild dyskinesia was little to none, and four months later after two failed programming sessions my dyskinesia is still little to none..I was booked in January to try another setting, but I called my MDS and told him that nothing has changed since my last appointment, so he said that he would see me in March..I came in off medication as directed, and he examined me..Evidently they measure your examination on a scale of 1-100, with 1 being the best, and 100 being the worst..My score prior to DBS was 65..My score in the December post surgery was 43..My score on March 25th was 41..So I have actually gotten a little bit better since my last visit, and my stimulator batteries have been on for a total of one week since surgery..They are off, and have been off for about 4 months..The first setting lasted for a week, then it was taking 3-5 hours for my morning meds to kick in..Then I started to get wild dyskinesia, so I turned the batteries off, and my meds kicked in shortly after..The second, and most recent adjustment started off with my programmer telling me that he had a meeting with the surgeon who performed the surgery, some other Drs, and staff to discuss my case..And my programmer said that he didn't know what to do with me?..He was at a complete loss about what to do with me..He told me that what is going on with me has never happened before..The dyskinesia is 95% gone, and 4 months post op my score was 2 points lower than my last examination, with the DBS shut off..My programmer did not know what he should do..He said, lets leave it the way it is for now..Then he changed his mind and wanted to try a few settings..So I decided, that since it worked at the hospital with me off meds for about 15 hours, I thought it best to turn it on when I went to bed, and my meds had gone off for the day..When I woke up the next morning, my mouth felt like my upper lip was pulling to the right, and my bottom lip was pushing to the left..My mouth felt like it was twisted..So I shut the thing off again, and that weird feeling did not go away immediately like it was supposted to do..It took about a hour to go away


I wanted to mention that the DBS was done in the GPI area of my brain, and these Drs are so at a loss, that they asked me if I would be willing to have an MRI done to re- check the lead placements..So I see them June 3rd for that..My programmer is very, very good at what he does, and my surgeon has done over 1,000 DBS surgeries in his career, and is considered one of the best neurosurgeons in his field


I am very curious about the results from the MRI

Stevem,

Please keep us updated. MRI scheduled??!! You better get me in there or there's gonna be some really loud complaining and you're not going to like it!

Hang in there!

Jim, the appointment is on June 3rd..I will have a reply by late on June 3, or on June 4th..I don't have an appointment with my programmer until July..I don't know how much info I will have the day of the MRI, but I will share the info that I will have with everyone

This morning..Dyskinesia lasted about a minute, maybe less, and it was very, very mild..The DBS is off, and the only thing that is stopping the dyskinesia, are the leads placed in my brain with no stimulation going to them whatsoever

I am grateful for the work the the DBS team at Beth Israel has done for me..They changed my life..And now I am hoping that whatever they find can be shared with others so that hopefully they can benefit from severe dyskinesia..They were 100% confident that in 3-5 weeks, the dyskinesia would be back, but it has been 4 months, and it is gone, and it feels to me like it's not coming back..Time will be the judge of that..I am on the same amount of pd drugs that I was on before surgery..However I get about 5 hours more on time per day

Th is is my drug regimen

150 mg Stalevo 4 times per day

25/100 Sinemet 2 times per day

.125 mg Mirapex 4 time per day

100 mg Amantadine 2 times per day

This regimen was a nightmare prior to surgery..I felt like a junkie..I couldn't live with them or without them..I used to have to go through violent dyskinesia when the were in the process of kicking in, and violent dyskinesia when they wore off a night, as well as profuse sweating and heavy breathing like I was having a heart attack ..And if I started to wear off inbetwen doses, it was hell to pay..Sometimes that was the end of my day..Just lay in bed until the morning, or sit in front of the TV like a vegetable

I just spent an hour responding to your post but somehow it got lost. I find it hard to navigate on this board. I may try again later.
Best wishes

I have had that problem too..I guess there is a time limit, so what I do is type it all on "word pad" or "note pad" and copy it from there when you are finished, and then paste it here

I know the feeling of typing a response and doing a ton of editing so people can make heads or tails out of it, and then click on submit reply, and lose the whole post..It takes the wind out of my sails

Someone told me that if you log in first as a member, your long typed messages will not disappear, and for me that has been true! You might want to try that since it is frustrating to lose your message. Steven, I do remember you from when you used to post on here, glad to see you're back. I too had DBS recently & so far have had a good experience with it, but awaiting more programming to get it just right. I posted about it here but was hoping for more response from others with DBS or planning to try it. I too had a honeymoon, but nowhere near as long as yours, just a few days, but as the programming is getting more refined it seems to be getting better. Does seem like a miracle, doesn't it? In my case, I got huge relief from a bad tremor as well as improvement in some other stuff, both expected & unexpected. Good luck!

Thanks Peony..I remember you too..It does feel like a miracle..I don't know what my fate is going to be but they told me that I was way past the honeymoon period..I hope this phenomenon that I am experiencing continues on, but pd is progressive, and chances are sooner or later I am going to have to have this thing turned on..But for now I am going to enjoy my new life, and see what happens

Hi Steve, I too am puzzled at your extended time period with this honeymoon like stage. But I'm sure you'e not complaining about that! I wonder what kind of device you have implanted? Is it a Medtronic or another companies device?

I can sympathize with your periods of just having to lay there and wait for relief. Right now I'm on the Duopa pump. it is a constant dose of levodopa through a PEG tube in my abdomen. I have had DBS my lead placement for the left side was marginal but effective nonetheless. I do not have any tremor, my problem is gait and balance. After numerous programming sessions over the years I felt that I had about the most relief that I was going to see from DBS.

The pump has been great! There have been a few minor problems but this is not nearly as invasive as DBS surgery. I'm very interested in what ends up happening with your DBS and whether or not your symptoms return. my DBS was at the STN site. I had bilateral placement and I've gone in for battery replacement twice.

Hi Jim..It has a lot of people puzzled..This has been beyond my wildest dream, and it has been a very good thing..All of the people who know me, and have been close to me all tell me that they all can see a big difference..Some friends of mine, and myself had a get together to watch a football game one night, and they were curious about how I was feeling, and one of my friends said the he hadn't seen me sit that still in a long time, and this particular friend's Mother had pd..He and his wife took care of her in their home during her last few years of her life, and the other guys agreed, that DBS has made some profound changes in my life..And it feels good to hear that stuff from other people


I have been curious about the pump..Do you ever go off ?..Do you ever get dyskinetic?..Is it still very expensive..Is the pump surgically implanted?


If this goes away, and I have to turn this thing on, I wonder if it will work?..I definitely feel very different than I did before surgery..This feels more permanent, but feelings are not facts


I have no idea what is going to happen to me..My MDS said that the wire placement might have caused a lesion on my brain, in which case I think the dyskinesia will never come back..Not sure about that..I have one fear..I have only had a couple of adjustments, and they made me feel weird..I realize that it was only 2, and there is a bottomless pit of things they can do..If I ever get to having to have to activate this thing, I wonder if it will work?

During the programming when my settings were too high, my mouth would twist and my speech was terrible. With your battery turned off your batteries should last a long time!