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DBS adjustments

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Husband had DBS feb. 8. Surgery went fine and is having no problems there now. He has already had 4 adjustments. First one lasted 5 days, no tremors and then they slowly came back. Second one same thing happened. Third one after two days he has dysk. so badly it scared him and myself so much I almost took him to the em. room. He could not walk without help and jerked so much it was scary. Called Caroline and she fixed him right up. {fourth one}. No more dysk. but his tremors are back now, but at least he can walk. He was on a setting of 5 , thats when all the disk, now he is on a 2. His tremors are almost as bad as before the DBS. Should I call again or just stick it out? He has another appt the 16th of April. I just hate to see him suffer so if there is some relief at hand, but Hate to be a bother to folks too. You do DBS so what would you want your patient to do?

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I would do the following things:

 

1- get an MRI and measure the lead location

2- if you have stimulation induced dyskinesia that is usually a good sign, however you need to go up very slowly on the settings (sometimes .1Volts every week or two)

3- it is still early so go low and slow

4- mix the medications in with the DBS

 

I would wait until at least 6 months with about once a month or once every two week adjustments before full court pressing for lead location and other issues.

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Guest

YOu said to get an MRI for lead location. If lead needs to be moved then that means another operation right? Well Dr. Smith is retiring the middle of may so we would be in a fix. Would not know where else to go. This is really a scary thought. But thanks for the info. will copy your advice and show Caroline. She thinks you are the greatest. Said she got her traing in Fla with you. We have the greatest confidence in her. She is great.

 

Thanks again for the info and all the time you spend on answering all our questions. marge

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Hi,

 

If you don't mind .... on the occasion of the 3rd adjustment, did you have the controller that turns the power off to the leads, or did you just visit the Doctor?

 

I'm 4 hours away from my programming nurse and am worrying about overshooting into Dyskinesia/Dystonia (yes, very scary) while away from the hospital.

 

Thanks!

 

Mike

 

Husband had DBS feb. 8. Surgery went fine and is having no problems there now. He has already had 4 adjustments. First one lasted 5 days, no tremors and then they slowly came back. Second one same thing happened. Third one after two days he has dysk. so badly it scared him and myself so much I almost took him to the em. room. He could not walk without help and jerked so much it was scary. Called Caroline and she fixed him right up. {fourth one}. No more dysk. but his tremors are back now, but at least he can walk. He was on a setting of 5 , thats when all the disk, now he is on a 2. His tremors are almost as bad as before the DBS. Should I call again or just stick it out? He has another appt the 16th of April. I just hate to see him suffer so if there is some relief at hand, but Hate to be a bother to folks too. You do DBS so what would you want your patient to do?

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Call.

 

Usually we try to reduce the medication first of we see dyskinesia which is in general a great sign.

 

Hopefully things will look up soon!

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Absolutely.

 

Emory or UF can fill in in the interim if you need help. This is not a probelm as we are all very friendly with the MCG site.

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Guest

Earlier wrote about DBS done on Feb. 8. Husband is still having much problems. Caroline is very flustered with not being able to get a good setting. At first we got the tremors stopped and dysk. was so bad, got rid of dysk and tremors are bad but about 30% less than before surgery. He is dragging rt foot now. Have had about 10 stimulations so far. We have lowered meds and are playing with them at this point to see just how much he may need. I know he is at 1.9 right now but dont remember all the other stuff she said. Caroline is such a dear person and has worked so very hard trying to help us. We were at her office from 10am until 4pm this last wed. She said she was going to e mail you to see if you had any suggestions. Just in case she forgot, I decided to. Help please. marge

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Caroline is a dear person.

 

You are still early. We generally see patients once a month for the first 6 months. We have patients come off for all of their adjustments. We take each contact and run what are called thresholds for benefits and side effects and then we select a contact and start programming. If programming causes dyskinesia this may be a very good sign and what we do is remain patient and go up very very slowly on amplitude (volts) every week or two (sometimes as little at .1 volts).

 

If after 6-8 months you are still having problems I suggest detailed imaging for lead localization as well as scales in each of four conditions. Your docs may or may not be able to sort it out with this information.

 

Finally if you are still having problems after the above a second opinion may be useful, but again give it 6-8 months.

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