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Michael Ehlers

Honeymooon period before using stimulator

12 posts in this topic

I was curious how many of you who had DBS had that honeymoon period where you notice improvement just from the implants and before the programming started...

 

9/26 is my stage 1 day

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coacht,y?

 

Can I ask what dosage of Sinemet your  wife was on before and after the surgery?

Dont ever make the mistake of reducing sinemet right after surgery. Only do it after several months after your settings are optimized

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Mike,

I actually can't remember since she is not good at sharing information like that. She doesn't even let me see her take her meds unless there is no option. So needless to say, I am in the dark a lot. She actually did not take any sinemet for the first month after DBS. I think she was taking two every four hours before that. I think she is on one now. The biggest difference is the dystonia is so much better. I don't know if she would be walking by now or shortly as bad as it was getting. So, I urge all PWP to share what they are taking with their caregivers and family.

 

Coach T

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Thanks  Coacht,

We pwp have to let our caregivers know everything.

You said her dystonia is better do you mean she was freezing up or shuffling her feet.

I wouldn't be so nosy but I'm just trying to find as much positive actual results from patients that had symptoms that I currently have.

I know every patient is different but I hear so much about DBS helping tremors, I want to feel more positive about freezing, and shuffling, and more on time.

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Mike,

 

Her feet would curl up into the shape of a C. She wouldn't be able to walk and it was quite painful Also her shoulders were stiff and painful to move. She was shuffling her feet at the diagnosis, but not before the surgery since Sinemet helped that. She is starting to shuffle her feet and walk like a drunken sailor the last 5-6 weeks. Time to be reprogrammed. Her handwriting is not good either most of the time. Her speech is soft and trails off at the end of a sentence. That is the same as before. She is taking LSVT now. Her executive function is getting much worse also, but that has come and gone before due to the meds. Maybe a list of her symptoms would help? Let me know.

 

Coach T

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Coach T

So it seems to be the pattern that post DBS ones balance and gait worsen. Cognitive can worsen, and speech can get worse. So can I assume she is taking less meds and the stiffness is less of a problem?

Hopefully to the point that made the surgery worthwhile?

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Mike,

She gained 7 years physically with the symptoms I noticed when her dystonia started with her dragging her left leg. I think she would almost be bedridden by now without it. Cognitively, the side effects of the meds for the dystonia were worse in a lot of ways than she is now. Same with the agonists. the balance is a new thing two years after DBS, can't say that it is related to the surgery with her. The speech isn't any worse. Did get rid of many med side effects at least as far as cognition goes.

Hope that helps.

Coach

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In a PD group, I met two DBS patients who are very happy with it and one is off meds totally and doesn't show PD symptoms. He shared what he looked like prior and what he looked like when it turned off.  Huge Difference! 

 

The other one is a female and she was very happy with it.  I don't recall seeing her struggling at all.  I am not clear if she still takes some PD medication.  She walks normally.

 

More recently, I talked to a co-worker who had DBS implanted.  He says he doesn't need the PD meds with it.  He walks stiffly and with a very quick shuffle. I don't know if he is just used to walking that way.  He is very happy with the results.  He has also been in a bad car accident, so he has other competing issues.

 

When I first started my PD treatment, a friend referred to a PD mentor.  He had a DBS installed.  He said it was worth it, but claimed it didn't do a LOT for him.  He definitely had the PD posture and shuffle, but he rides bikes for hundreds of miles.  After one bike trip he said he couldn't move.  He realized his DBS ran out of power. When he got it back on, he was able to move around like before.  He then realized how much he really depended on the DBS.   

 

So, I have seen mostly success stories.  I think it has to do with making sure you are a good candidate and a good MDS.  I am starting the process for getting one now.

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