I am a non tremor bradykinestic type. My off periods are characterized by slowness and dystonia in my feet with anxiety. The neurologists thinks it's time for DBS. Does anyone have experience with similar symptoms?
DBS for bradykinesia : I am a non tremor... - Cure Parkinson's
DBS for bradykinesia
Hi,
My dad has this type of Parkinson's. Virtually no tremors, all his symptoms (movement related) are slowness, rigidity, etc.
He had DBS at the end of July. We have noticed that the DBS has smoothed out his on/off periods, although he has not been able to reduce his meds that much. He also is not dyskenetic now, whereas by late afternoon before the DBS, he was all over the place from all the Sinemet.
We are still working with programming to get things optimized for him, but we have noticed a difference for the better.
Good luck.
My diagnosis is similar. I have minor tremors but my biggest problem is bradykinesia and rigidity I just had my 2nd DBS surgery on my left side and will get my neurostimulator on the 17th. Once it is balanced with my right side I'm hoping for great results. I'll let you know.
Bob
My husband has nn tremor type of young adult on sought pd. had DBS 10 years ago. For D this was short of a miracle. He feels so good and is off his parkie medicine. He sees his neurologist every 6 months for battery check and tune up. Also has botox in his jaw line for drooling. Will be having collagen injections in his vocal chords to speak louder. When his doctor suggests methods or treatment for his p.d., we jump on it. Hope you get the relief D has experienced. Good luck!
Dear Etterus,
I am a non-tremor PD person who had DBS In October, 2010, 4 years ago. it has helped-some. the biggest help is that it provides a constancy base from which it helps me stand and move-but I still need the sinemet I take even though I am taking 2-4 pills/day as opposed to 12 before the DBS. that's the upside. the downside is that they have to place the electrodes in your brain close to the speech center and it often interferes with speech-it does to me anyway. I have a controller and I set it at moderate output so that it is a compromise allowing me to have to work harder to make myself understood when speaking but at the same time allows me to move better. my symptoms are bad balance, walking unsteadily, and slow movement.
regards,
ken (bicycling with pd)
Thanks. To all. Ken, did you have dystonia before and has it improved? Is your balance better?
As to the placement of the dbs, I don't think I ever knew the answer to your question. I wasn't even aware there were different sites, sorry.
As to whether it has helped with my balance, it has helped somewhat. For example, if I choose to shut the dbs off, I feel shaky. My balance is best with the dbs turned on to the minimum voltage and I have taken a sinemet. I've been told the dbs works best for tremors-not walking and balance.
I am having DBS tomorrow for the same symptoms as you have. I don't have tremor either just an inabillity to move when my meds don't work. Some things have saiid DBS will help other say no. but the surgeons told me that if Levo dopa helps then DBS will help. I know it is confusing. Good Luck and Health to you.
I have seen 4 different movement disorder neuro's that have all agreed that DBS can help nontremor PD.... best of luck to you.
Hi Hidden
I am due to have GPi DBS early in June and would be really interested to hear if it has worked for you or not?
To be honest, if it's going to be hardly any improvement, I am thinking twice about going through all that and with all the time off work - I am a self-employed partner of a bricklaying company and we are really busy at the moment.
What would your advice be?
Cheers, Gary
The answer is yes. I had it the 1sy week of December. The programming was delayed due to holidays. Initially I was seen by my local neuro but went back to the neurosurgical center for subsequent programming which has improved my dystonia/dyskinesias/bradykinesia by 80-90%. I'm still awaiting further programming to see if I can start to decrease meds a bit more. I would do it agin Ina heartbeat but find the best neuro team you can. Good luck
I also am a non tremor pd person. I had dbs in March of 2014. It was gpi. My symptoms are bradykinesia and dystonia. So far, it hasn't helped a lot. Though I guess it takes longer for the gpi to take effect. Carbolevo is very effective on my symptoms. I have been prescribed baclofen also.
I have been to 6 different movement disorder Docs that have confirmed that DBS is more effective for tremors but still have success with dystonia and dyskinesia. I hope you improve overtime.
What does DBS stand for? My husband has all the symptoms of slowness, rigidity stooping and slurring when he talks.
I mean what do they do in dbs?
DBS is deep brain stimulation. It’s a surgical procedure that inserts electrical wires deep into the brain stem to control motor dysfunction that is not being controlled well with meds. It is not for everyone but is very effective for the appropriate group. It a lot like a pacemaker for heart problems.
etterus,
How often does the battery have to be changed and is it an in hospital surgery to replace the battery or something simpler?
Art
My unit is a Medtronic that doesn’t require recharging but has to be surgically replaced. I had this done year and a half ago. This was after 2.5 years of continuous high output use. The procedure is a same day technique.... a piece of cake. I’m very pleased with my results though my speech is effected adversely. I have not fallen once in close to five years. For the record, I’m a PIGD... no tremors but I have postural instability, gait disorder. I also have the less common electrode placement of the globus pallidus internus, GPI instead of the STN; sub thalamic nucleus.
If you are considering this, I would make sure that you are seeing the best team that is available... I went to OHSU at Portland OR and was treated by DR Kim Burchiel.... a world class team and facility.