DBS

[maidar]

I am looking for people who have had any experience with DBS!

[ccobroussard]

I had surgery on March 27th (a little over 4 weeks ago). I had the stimulator turned on yesterday. What kind of info are you looking for?

[mccshe in reply to ccobroussard]

Anything you can share would be great! I was told some time ago that I was a candidate for dbs. I thought it was for tremor only and since that is not a problem for me i immediately rejected the idea.

I have since heard that it can help with many things such as pain and stiffness and even depression. I am starting to reconsider the option while I still have health insurance and i would love to hear what your experience has been so far.

If you don't mind sharing would like to hear from you.

[Helenxxx in reply to mccshe]

LOTS of us would benefit...I am sure! My husband is due to have his first appt soon with the "Team". He also does not have a tremor...so i wonder how they can tell when switching on if it is "just right"...???

Thanks

[Hidden in reply to Helenxxx]

I didn't shake. They can tell by stiffness and other movements . Its great!!

[maidar in reply to ccobroussard]

Any you can give me! My neurologist at Yale told me that they don't do it and that it is very expensive

[compucure]

I highly recommend it! Had it done in 2011 and never looked back.....Tony x

[Jash]

It's made a big difference for me.

[srarndt]

Best increase for the quality of my life!!!

Type DBS into the search window on the upper right corner of the page and you'll find much more discussion, info, and experiences with DBS.

Best Wishes!

Steve

Bisbee, AZ

[landman in reply to srarndt]

Great bio! Have a blessed day.

[Sadiesadie]

I had it done in 2004 and 2005 and I would do it all over again. I had one complication but it was the best quality of life decision I ever made!!! Let me know if anid when you have it and how you do!!!!

[ccobroussard]

it has only been a month and I am still healing but would DBS again in a minute. IT IS FANTASTIC!!! I had some tremors but that really wasn't a big problem with me. My big problem was the stiffness and rigidity and dystonia. I had a lot of that in my feet and legs. It improved immediately. Just the surgery itself creates some micro-lesions (hope I am spelling that correctly) on the brain and you will feel a difference in the recovery room. My toes on my right foot ( which I had been receiving Botox injections in for the last 2 years) were no longer curled. I also had some pains that were gone. Now the pains came back I about 2 weeks but that is okay, I had the stimulator turned on Friday and it is a long and slow process. I am still on all my meds and according to my doctor I will probably have to continue taking all of them because of how far my pd had progressed but it least I am more comfortable. After turning on the stimulator for the 1st time, a majority of the tremor on my right side and the foot dystonia is gone right now. now I still have some pain and stiffness in my left hip but that I feel will go away too. I will go into the dr. every month for awhile till they get the stimulator setting just right. The brain they told me has a way of adapting and a setting that is good at the dr. office may not be good in 2 weeks and we all know how difficult pd is to treat. But all in all so far this has been a wonderful experience. The surgery was all done in one day where the electrodes and the stimulator were both placed. I just spent 1 night in the hospital and walked out the next day. very little pain in my head, the most difficult to get used to the stimulator and they say that is normal and will take some time. My advice is if your doctors and their team feel you are a good candidate go for it. You will not regret it.

[moonswife]

My husband Mike spent 8 months of evaluation in 2009. He was still working everyday in a physically intense business we owned. During the course of that year he lost 35% of his body weight shaking with tremor 24 hours a day, to the point we were finally paying employees to perform all but the office work, which I did. In January of 2010 he had the 1st stimulator planted. NO TREMOR. By then we had closed the business. I also work a 50 hour week at another job, so I was glad to give up his office duties. He resumed his hobby, which involved power tools and life was rolled back 10 years. Sadly, only having one side done left stimulation only on one side, and he began a lot of back pain. So they did the other side, which corrected the scoliosis like symptoms. Back to building teardrop trailers. Its not the magic bullet, but with the necessary reprogramming (about every 7 or 8 months) he takes less Rx and his ADL nearly normal. Now we are seeing the natural progression of the disease. He had done the recommended exercise to keep limber. Other issues, not PD related have impacted his life. His inherited bad feet hurt terribly. But, both parents and all his siblings have bunions and get painful callous. Would he do it again.........in a heartbeat. Is it right for everyone? Depends on the symptoms you are trying to slow down.

[etterus]

I also am not tremor dominate. I am bradykinetic with dystonias and dyskinesias. I am also very anxious with depression. I was evaluated by the Mohammudd Ali team in Phoenix and it was a go.

Since my son is a MD in Corvallis OR and affiliated with a seasoned neuro team, I elected to have it done in Portland Or by Dr Kim Burchiel. At OHSU.... world class. My final testing is scheduled for May 9th. I am expecting the full anasthesia with globus pallidus interns location.

[jonroberts]

I had DBS surgery in June 2012. My quality of life greatly improved. My symptoms are rigidity, bradykinesia, dysikensia, cramping, and mild cognitive impairment during "off time". These symptoms were much less during off time and I was more normal during on time. I was a passenger in a car accident at 35 mph. My head hit the air bag and saved me from injury. However, the impact caused my brain to not listen to the stimulator. As a result all my pre DBS symptoms returned. My Parkinson's specialist advised daily exercise and physical therapy will provide recovery over time. I am feeling better but still have a ways to go for recovery.

[98Rob]

I had it done in Jan. 2007. Best decision I ever made regarding the treatment of my disease.

[maidar in reply to 98Rob]

Please go into more detail!

[2Chrissie4]

I have several symptoms for Parkinson's but it is mainly tremor on the right side, stiffness in my lower spine on the left side, spells of extreme heat, numbness in my arms and pins and needles in my right hand, i also walk slowly with a gait that makes me look as if i have had a few. My main worry is the tremor as is is badly affecting my quality of life now even while taking Rasagline 1mg daily! I find it upsetting that i can no longer make a hot drink without having accidents scalding myself in the process also holding a plate with my right hand and the food slides off the plate due to the tremor. Would DBS help me do you think? Not due to see my neurologist until next April unless there's a problem. Also everytime i type i have to check everything as i tend to leave letters out of words and just lately when i talk i stop because i forget what words i want to say.

[bicyclingwithpd]

What specifically do you want to know? I had the DBS surgery in 2010. It proivdes me with a base of stability. I do not have tremors but I have difficulty walking and have balance problems, slowness of movement. before the surgery I was taking 10-12 sinemet pills a day. now I take 3-4. I still need the pills, but much less than before. one drawback however, is that it affected my speech for the worse.