When is the right stage to have Deep Brai... - Cure Parkinson's
When is the right stage to have Deep Brain Stimulation?
Best to check with your neurologist. Tony
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...
Current thinking is when the off periods progress to greater than the on time. Also, the earlier the better to protect downstream networks.
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.
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.
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.
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.
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.
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.
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.
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.
