When is the right stage to have Deep Brain Stimulation?

[BMichalos]

[compucure]

Best to check with your neurologist. Tony

[Crbee3]

i did it as my last resort...it is up to your neurologist

as to when they believe it is the right time for you...

[etterus]

Current thinking is when the off periods progress to greater than the on time. Also, the earlier the better to protect downstream networks.

[BMichalos]

Thank you for this input. I live in SA and have been diagnosed at age 44, 7 years ago now but I work back to first symptoms having been in my early 20s. I have a son of 21 and daughter of 17 and absolutely no PD in the family until the other day when my mom's brother was diagnosed with PD at age 59. I tend to agree with your comment the earlier the better so as to retain my present stage which has been set at an early 4th stage. I am still quite independent although this comes at great cost to my body and the pain and other illnesses often occurring such as Shingles in February 2013 and now I have Tick Bite Fever. I am susceptible to all infections. I am appalled at the cost of DBS. In SA it is R250 000 and as a state patient I do not have such funds. I wish I could access an organisation that would perform the procedure Probono and I would pay the travel costs to wherever I need to go. My biggest problem is 'off time' and tremor, shaking and dystonias - surely a good case for DBS. I do lots of research and try to manage my DBS without it overwhelming my whole life.

[rch21 in reply to BMichalos]

my neurologist just recommended it to me - I had the impression it was only for when the meds stopped working. She indicated some recent studies that show that the best results are when they are still working , you are in good health and relatively young. she also indicated that if it is more pronounced on one side that would be another positive indicator. I am 59, still running and race walking and my meds work, though I do get worse at about 3 hours ( I take Sinemet 25/100 2 tabs 5 x per day, Sinemet slow release 50/200 2 tabs at night and Mirapex ,25 mg 4 x per day). I am still researching but am finding research that does support doing it early. I am leaning to this as rigidity in my right leg is starting to interfere with my workouts. Good luck.

[BMichalos in reply to rch21]

This is my sentiment exactly. I am 51 and had to quit working outside home about 3 years ago due to the problems with immunity and I keep getting whatever is going around as far as infections are concerned which is an indication to me that my body keeps going downhill. I am very independent and want to delay the need for caregivers as long as possible and so I would like to have DBS at the soonest possible time. I was recommended to have it at my diagnosis 7 years ago. I use 6 25/100 Carbilev daily and 3 x 2mg Requip too. I have about 6-9 hours on time daily. Thankfully, I have little dyskinesias.

[Carrie-AnnM in reply to rch21]

Hi, I know its four years later, did you have the procedure? I am now 59 years old, a runner, been through meds all my life. Nothing really works. I have Esential Tremor, that is sometimes really bad, and other times not so bad.

I would hate to lose running, its so much part of my life.

[rch21 in reply to Carrie-AnnM]

not yet - after considering various aspects of the situation, I decided to wait - partly due to wanting to be as active as possible as long as possible (my understanding that dbs works for a limited number of years. My exercise level remains very high and regression has been slow. I am getting closer now, though, as I am near max on meds and off periods are increasing. Symptoms during them are greater iin number and intensity, although not very consistent.

I am still race-walking (and doing a little running) 20 -25 miles per week plus doing other exercise as well. Good luck with your decision and keep pushing yourself.

[Susie01]

I am now 52, also an early onset. When first diagnosed I started researching (which I still do). At that time DBS seemed like a good idea to me. After being on this site for a few years it seems that just like different meds, everyone reacts differently. Some have very positive experiences, some are negative.

I have not personally met any other early onset PWP, nor anyone who had DBS. I would definitely like to talk with several person to person before I would have it done.

Like the others who have responded, I do seem to get everything that goes around and my

PD symptoms are always worse with any illness. I am soooooo tired of being sick, am just feeling better after a day illness.

[BMichalos]

Hi Susie01

Yes it is as you say. How long ago were you diagnosed and when do you think you started with PD? I also am a researcher and dont just jump into anything. Where are you from? I live in beautiful Cape Town, South Africa and was diagnosed 7 years ago and estimate I have had PD for about 25 years now.

[Jeanna]

I have heard that one should have DBS when the meds are still working, at least for a while, though they may be wearing off sooner than before. I had an "on-off" test, and my doctor saw a 40% improvement after the medications kicked in than when off meds for 12 hours. She then told me that I would be an excellent candidate for the surgery, and I did go ahead with it in late January, 2013. I had the leads put in the globus pallidus site bilaterally. I am still going to the neurologist for further programming adjustments at intervals, so final result is pending, but I do have a great reduction of my tremors.