Anyone With DBS? Please give me some feedback.

I could really use some feedback.

I was diagnosed 12 years ago. I've not had good results with any meds other than Carbidopa-Levodopa 25/100 and I have to to take 1.5 tablets every 2 hours. I know that's a pretty high dose. As a result the dyskinesia has really set in lately. My balance has noticibly worsened.

I also had a nasty health downturn right after Christmas that lasted almost 3 months and put me in the hospital twice. I have never been sick, enjoying remarkable health throughout my life up until this 3 month bout. The doctors are still not sure what happened... maybe the flu but whatever it was resulted in keeping me in bed, not being able to eat, sleep... miserable. I'm finally over most of that but it has left me in weakened condition. I also have developed numbness in my fingers and toes just in the past month. My blood pressure fluctuates wildly from a low of 76/54 to a high of 190/125.

My neuro has mentioned DBS at every visit for the past year or so. I pretty much just waived that option away feeling that it would prevent me from participating in clinical trials and possibly keep me from getting some new, remarkable treatment.

After this health scare, I have opened my mind to DBS but frankly am quite frightened by it. I'd love some feedback from anyone here.

Some of my questions are:

1. How did you feel during the days right after the initial placement of the wires? Were you able to do any work (light work like on the computer)? I have a job that I love and I am hoping to not have to take too much time off of work.
2. How long was it before you could do light work?
3. How well does DBS work to get rid of dyskinesia?
4. I've read that DBS makes you sleep better. True?
5. I have nasty muscle cramps. Does DBS help?
6. Did it effect your eyesight?
7. What do you like about DBS?
8. What do you hate about it?
9. What do you wish you had known before you had it done?
10. What about it surprised you?
11. Would you do it again?

Thank you all for your input!

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!

obviously not an "overview" but some food for thought
https://twitter.com/SierraFarris
http://www.centerformovement.org/201...b_source=pubv1

where you get it done is obviously very important.

I really appreciate your taking the time to offer your experience. Upon your suggestion, I am going to seek a second opinion at a COE.

Madamlash-
I am sorry that you are having a rough time. While I have not had DBS, there are enough similarities between our conditions that I thought it might help. Like you, I was diagnosed 13 years ago. After trying a number of meds I, too, have cast my lot with carbidopa/levodopa, although at a higher dose than you. I am taking 2 x 200/50 every three hours (6,9,N,3,6 and sometimes 9 PM) and doing pretty well. I have been on this schedule about six months. Had some DK at first but dropped the dosage quickly to a level that gave some stability. For the most part I am functional most of the day with a vulnerable period in mid-afternoon that I am still working on.

I took this route because the requip had been a DK nightmare plus a desire to experiment that would bring in problems of polypharmacy. My neuro approved especially since he doesn't trust the agonists either. And c/l is an old med whose problems are well known.

I particularly relate to the blood pressure issue since my high end has at times reached the same scarey levels. I have been taking a beta blocker and an ACE inhibitor and have recently begun to slowly shift to magnesium and potassium with some success. I watch it closely particularly as I change things around.

I also watch my GI system. Slow action interfers with meds so I take ginger which is a big help. Constipation I address with senna an old herbal laxative.

I take turmeric because anything with that much good press has to have something going for it. It has kept Ron alive so it should help me too.

I am experimenting with creatine at low doses for muscle strength and beginning to exercise for blood sugar problems that come with sinemet. And a multi and a B-complex to round things out.

I have noted improvements in GI function, sleep quality, blood pressure, dependability of PD function, etc.

I take as much c/l as needed to minimize symptoms and I stay in bed until functional. This gives both my wife and myself a psychological boost that is of great value and it is safer as well.

Finally, I group things that conflict with c/l or that make me sleepy at bedtime. I don't eat until coming on and then start with protein (esp eggs) to keep blood sugar stable.

Sorry for so much detail but it seems appropriate.

Some things that stand out with you are the bout of the crud that you just had and are still recovering from. It can take months for healthy folk to get over that and your doc may be rushing things more than he should. And you are vulnerable and just want it to be over. But even if you opt for DBS you want your immune system running smoothly beforehand. Infection is still one of the problems. Do a search for "attenuate microglia" for ideas here if you buy into my rambles as to PD and so on.

Good luck-

I always follow your posts with great interest. I would chew on old rat tails if someone could make a reasonable case for their therapeutic value. To be crushingly honest, you hit the nail on the head with your comments regarding my recent illness. It has given me a frighteningly up close and too personal look at how it feels to be really sick. I am going to insist on wearing my bitchy hard to sell hat and take whatever time is needed to do my due diligence. (my nom de plume was not of my choosing but rather was assigned by those who know me well)
Thank you!

1. A bit sore but nothing Panadol couldn't fix.

2. Some time as electrode on 1 side not put in as well as it could be and consequently gait and balance were much worse.

3.My dyskinesia was awful before DBS but since (9 yrs now) it hasn't returned.

4. Yes I definitely have slept better since.

5.Dystonia has gone. It was excruciatingly painful when it happened before
DBS in my case shoulders, neck and feet were most affected by it.

6. No eyesight I don't think was affected.

7. Lots! Let me start with the fact that my suboptimally placed electrode which caused pretty severe gait and balance issues after DBS was corrected 5 months later with excellent results.
For the first few yrs I managed without ANY P.D. meds. I was on 1,200mg pre surgery.

8. Not much to hate really. My balance isn't the best but part of that is a separate issue to the whole PD DBS thing.

9. That my neurosurgeon had only performed the surgery on 2 patients!

10. I continue to be surprised and very grateful for it every day and don't want to think what life would be like without this amazing gift.

11. Yes!