1/20/19 . Does DBS directly affect non-motor PD symptoms?
Hi- I am a 51-year-old physician-I was diagnosed with PD diagnosed 10 years ago. It has remained asymmetric and my “on” exam is the same as at diagnosis. Obviously, I am on much more medication-I take Entacapone every 2 1/2 hours, I have off periods which can be awful-lately for approximately30 minutes after I take the l-dopa—it is very dependent on my GI function. I do get bad foot dystonia approximately every 3 days, and most importantly, in large part due to my family dynamics, I have developed a severe anxiety disorder. I don’t jhave any significant dyskinesia. My motor guy recommended DBS- mostly because of the fact that I still have. Good exam at 10 years and no dystonia, though he definitely thinks I t will have a big effect on my anxiety/panic- which obviously makes my PD manifestations much worse! I have written that PD is the ideal example for the negative vicious cycle Since it is all connected in myriad ways-DBS has the potential to help my anxiety via less dystonia-less off-less meds; does anyone know if it can have any direct effects on mood or psychologic expressions of PD. The neurosurgeon that I had an initial consult with told me I could be completely sedated, and it has been shown to have identical results with an awake procedure! (though I liked this answer- I would think awake would be optimal. There is no doubt that the placebo effect is very active in PD and if I think that my support systems is my biggest problem-I wonder if it will be less efficacious. Also- exercise/weight training is a huge part of my life and mood. I am interested in people’s experience with how obtrusive the generator.is, -especially in the gym. In addition. i know that her is theoretically no difference in outcome between awake/anesthetized patients. does anyone have any insights into this?

Dave

Dave,

I have no experience of DBS, but regarding your symptoms, are you sure that your drug regimen is optimal? Perhaps, your doses and frequencies haven't kept pace with the progression of the disease. I suggest that you discuss this with your doctor.

I found group therapy very useful to reduce anxiety.

John

Hello Dave,


I would first like to say that I can think of two PD members who have had DBS within the past five years, Steve and Peg. I have not seen recent posts by them on how they have done with DBS. It would be helpful if they checked in.
My wife was PD dxd about 16 years ago. Because she had visions with insight about 10 years ago, and now PD psychosis, she was denied DBS. The psychosis was made worse by drugs containing encaptone, like Stelevo. She has been on Rytary for the past 18 mos, much better than Sinemet. If you now have "visions with insight", it is a good predictor that it could go on to psychosis which will make life very difficult for you and all around you.

Hi Dave!

I rarely read posts here but somehow your post popped up and I was immediately drawn in, so I will toss in my little bit of info/advice.

For background purposes, I am a 48 year old non practicing pediatrician living in the US. I was diagnosed 15 years ago. I had DBS (GPi target) in April of 2017.

First and foremost, I would like to suggest, if at all possible, to find a way (be it psychotherapy, cognitive behavioral training, medications, meditation, mindfulness, whatever combo of these) to manage this anxiety. Anxiety can be so debilitating! It makes everything worse. And DBS will NOT likely make anxiety better, I think (I base this comment on personal experience, not data, so please educate me/us if it has been found otherwise that DBS itself lessens anxiety. In fact, it�s plausible that it could make anxiety/depression/psychosis, etc worse.). Either way, I sense (by your post) that anxiety is a significant issue at work here, and I would try to make it as manageable as possible before embarking on brain surgery. And, unfortunately, it can take a while to train your brain or retrain your brain but it�s possible. Either way, DBS does not cure family problems! (If only! &#129315 Best of luck to you! 🤗

Mary (aka xaxa)

I had DBS in June 2018 with the Gpi target. That target was chosen because there is less aggravation of non-motor symptoms which trouble me. I still have problems with cd ld/wearing off- linked anxiety. However, being better able to sleep and to eat,to exercise harder and be more independent has reduced its negative impact on my quality of life.

My surgeon has said from a few weeks after my surgery that I should not restrict my activities due to having DBS other than headstands in yoga.
I play tennis and practice yoga. I have had problems with the generator because I move a lot and scar tissue has not formed enough to hold it in place. My surgeon says this is rare. I have been taping around it with kinesiology tape and this allows me to move how I want to and it seems to be staying in place more even when I am not taped up.

Per surgeon, the device could be tacked down more securely but it would likely restrict my range of motion. So, my answer is no it is not obtrusive if you mean restricting motion. Can you see it in a tight tank top- yes? But it is not noticeable in any kind of shirt or top that is not tight across the chest or low cut.

The lead in my neck feels tight sometimes. I would ask your surgeon ahead of time how to avoid restrictive adhesions in that area. I chose the Abbott/St. Jude�s system. It supposably has the stretchiest leads but they are prone to coiling which seems to defeat the purpose.

So far, I have done only body weight exercises on my upper body. My husband wants me to start a functional fitness based weight training program. I feel ready! Kim

Either way, DBS does not cure family problems! (If only! &#129315 Best of luck to you! 🤗

Mary (aka xaxa)[/QUOTE]

I agree with that, Mary! The first few months post DBS were an emotional roller coaster ride for me and those around me, especially my husband. If possible, I recommend some marital therapy focused on possible role reversals, communication and expectations before hand. We made it but not completely unscathed! On the other hand, life is more of a partnership once again and we are having fun together.

I had DBS surgery 2 1/2 years ago. I was diagnosed 9 years ago. it has taken away much of my tremor. Love it and would do it again in a heartbeat!

I was dxd in 2003 but symptomatic for two years prior. I had bilateral DBS in March 2018. Prior to DBS I vacillated between being stuck in the chair and severe dyskinesia. I'm doing very well now. I was fitted with Boston scientific Vercise Gevia DBS system with rechargeable battery. I had the whole system installed in one four hour surgery under general anaesthetic, done in London. It's not available in Ireland yet, which is where I live. It has been life transforming surgery for me.

Initially I travelled back to London for programming but now I have found someone locally who is willing to train in programming my device. I think anxiety is an issue for most pwps. Initially I had some relief from it post surgery, but lately it has returned again. I find meditation and exercise helps.

It's my understanding that new techniques have improved the success rate of DBS under anaesthesia and in fact it is more preservative of speech function.

I'm happy to answer any further questions, just pm me.

Dear Dave,

I had DBS 2+ years ago and would do it again in a heartbeat! I was fortunate to have a very experienced surgeon who had done the procedure over 500 times with no deaths. I was anxious about the surgery but did it anyway. Sure glad I did. every couple of months I turn off the DBS and the tremors start again and am so thankful I had the DBS as I turn it back on and the tremors stop! Mine was done in the left side as I have right sided tremor. Apparently the left brain is where speech control is generally located and the surgery has affected my speech a little. I understand docs now know this and work to do surgery that doesn't affect speech, but suggest you talk to your doc about that.

Hope this helps,

Tim