Mitchell Niese
Forum Replies Created
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My main symptom, tremor, disappeared for few days but slowly returned as the brain swelling went down. I did sound totally
drunk for week. But, overall nothing of a big concern.
So happy for your fathers positive final result! -
The first 6 months post DBS I was able to go without any medication. Recently I’ve begun taking 1 or 2 C/L per day. It helps with breakthru tremors and seems to help with stiffness and slowness enough to get a good workout, which always calms me and makes me feel better. Before DBS I was taking
2 C/L 25/100 4 x per day and never felt as energetic as i do now, mainly because the tremors are now reduced 95%. -
Barbara,
Like you I had both BDS surgeries in April 2022. My experience is a 100% positive.
I’m a 66 year old male with severe resting tremors for 3 years. Its unbelievable to see the tremors just stop in the arm, hands, leg and feet! I can sit and relax for the first time in years. The pain and stiffness in the arm and leg have subsided with some work now that the tremors are gone. I not had any real side effects and am off levadopa except an occasional pill when I’m golfing or in a stressful situation.
I’m lucky, neurologist and surgeon said my symptoms made me a perfect candidate for DBS which I had done completely asleep.
Mitch Niese
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I’m currently investigating getting DBS and would like to here anyone’s experience with DBS.
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Linda, I had the totally asleep MRI guided DBS just 1 year ago at age 66. It went easier dared to hope for. At this point I get by w/o any meds. You asked about the placement of the generator; you’ll be sore for a few weeks but soon get around w/o knowing it’s there. Your only limitation is no skydiving.
My recommendation is if the Dr’s say it will work for you, consider it because it great! -
Fran,
Your reasoning is very sound. You are listen and learning but remember no 2 people have the same Parkinson’s or the same desires. Your doctors should give you straight advise, much better than our antidotes. Trust whatever YOU decide.
On a personal note. I had nearly the same questions 6 months ago. Had DBS 5 months ago just 2 years after diagnosis. Heard from people that it was to early; but my desire was to get in front of this as much as possible. I couldn’t be happier with the results!!
Mitch
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Nancy,
The need to take meds after DBS would be because of the type of symptoms, the severity and how symptom free you want to be. I get along w/o meds 95% of the time but when I golf I take a levadopa to get the last 5% of the tremor that arises in stressful situations. Some symptoms are just easier to control with DBS.
I’ve never heard about living alone to be a deal breaker except immediately following surgery; you will need someone to stay with you then. The voice on cognition risks, they can be mitigated with programming or as last resort just turning it off.
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Cap,
Enjoy the “pain and veritable torture”, while I take any and all relief offered today to live long enough to enjoy the cure.
Mitch
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Barbara, so sorry to hear your DBS experience. Like you I had DBS this past April. But, unlike you my outcome has been 100% positive.
Don’t be discouraged, it may take some extra effort to get it “tuned in” just right for you. During my programming sessions I’ve watched my left hand as it appeared to be possessed. They were able to open and close segments on the electrode to eliminate that side effect. Keep working on it. I’ll pray for you to find success, you deserve it for being so brave.
Ps.. May I ask the manufacturer of the DBS system?
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Sabine,
The 2 programs are interesting. I just had DBS in April 2022 and it works great on my tremors, which is my main complaint and i stopped the programming session when the tremors stopped. I was so thrilled with that! But I would like to improve my ability stride with my right leg and I’m going to look what they can do with that also.
Your husband must have a sharp mind, I would of hated to see my programming work the week of the electrode placement. I sounded like a drunk for a few days.
Mitch Niese