Originally Posted by Jim091866

Hi, I hope I can help. Our situations are very similar in the amount of time we have had PD and the amount of levodopa we are taking. I had PD for a little more than 10 yrs prior to my DBS in 2007, I am taking 1 1/2 of 25/100 every 2 hours NOW after having DBS!
First if you are having dyskinesia your dose is too high, lessen it or space it out more. I will try to address your questions. Then I will add my experiences to it.
1. The days immediately after the surgery were great. They were the "honeymoon phase". Wherein the brain has been tickled by the surgery and the lead placement. You have a relief of symptoms but the DBS has not been turned on yet! This lasts for maybe about a week. I cannot relate to being able to do any work, I am retired and on disability since shortly after diagnosis. However, I don't know that you will want to, I needed to rest.
2. I don't recall exactly how long it was before I could return to my activities as before the surgery.
3. Dyskinesia and DBS. It works well for the dyskinesia, at least in my case. I now have a consistent level where I know that I can take a specific amount and I'm not going to be dyskinetic.
4. I don't know that DBS makes you sleep better. In my case my CPAP for sleep apnea and snoring makes me sleep better!!
5. muscle cramps. I don't have any so sorry but can't answer that one. These are perhaps dyskinesia? or are they dystonic cramping? Clonazepam should help in this case. Especially if they are occurring at night.
6. No I don't think it affected my eyesight. I needed to get glasses anyway, my eyes are getting weaker-I am 46 y/o.
7. What do I like about DBS? Despite my feelings for a long time that it did not help me, because I don't have a tremor, I can see many ways that it did. I would not be as stable as I am without it. I can stay pretty much on all day as long as I don't fall asleep napping and miss a dose. I can take my 1 1/2 tablets every 2 hours and I am fine.
8. I don't know what I hate about it. It is an ordeal to find the right settings.
9. Don't know what to say here about what I wished I had known.
10 and 11. What about it surprised me? Would I do it again?

My situation differs from yours in that I did not have to be concerned with returning to a job. Some of the important questions I would be worried about are:
1. Do you have a strong support system for after the surgery? Someone to take you back and forth to the visits for programming? These can be very complex and time consuming, draining for the patient. How well does this person know your Parkinsons. If you come out of a visit and on the way home these settings are not right and you start to feel more rigid or dyskinetic are they going to be able to get you back to the office? Or the next day? It is after the surgery that the work is put in. Finding your settings is a complex task.
2. I would recommend only having the surgery at a PD center for excellence. They have the experience and resources to best deal with DBS and Parkinsons.

Do you have a tremor? Those who do respond much more dramatically to DBS, it is easier to target the leads. If you do not have a tremor I still think that you will benefit greatly. It isn't as dramatic as someone whose tremor stops when they turn on the DBS. If you do not have a tremor, I would not even consider the surgery anywhere else than a center of excellence. There is more time spent in finding the right settings and programming than in the OR.

My surgery went well, no complications. I would not be concerned about "what if's" as far as future clinical trials go. The only thing I am holding out hope for is the Duodopa pump and I really don't see that coming anytime soon.

I don't know your age or your other medical history but:

If you have a good support system
If you can get to a COE preferrably
If you do have a tremor (this is better than not having one)

I would go have it done. You have the potential to gain these next five years being more stable. Or you can continue as you are going now, any trial that you participate in is not going to yield any new treatment in that 5 yrs timeframe!