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Topic DBS and Cognitive Changes Go to previous topic Go to next topic Go to higher level

By EachDay On 2014.09.13 19:28
We are 17 years into this journey. By way of introduction, my husband was 49 years old when diagnosed, retired at 54 but even now at 66 he remains mobile, social, and loves games such as canasta, Mexican train dominoes and horseshoes and does well at them. We moved to a CCRC (continuing care retirement community) 3 years ago and he is able to move freely here.

He is now taking his doses every 2 hours during the day with changes in the evening and then taking his last dose of time released sinemet for the night at about 10:30 pm.

We decided it was the time for DBS but after a 2 day evaluation including neuropsychological testing, he was considered high risk due to his psych exam. The test results had 5 levels -- level 5 they would not do the surgery; level 4 was high risk. We have decided not to do the surgery.

My question is have others had a similar evaluation and proceeded to do DBS. How did you fare? Overall for DBS patients, what has happened cognitively?

Thanks for sharing any of your experiences.

By Witsend On 2014.09.14 01:11
My husband took the neuro-psych testing prior to his DBS surgery in February of this year. His results were not good, but the psychiatrist stopped short of not recommending the surgery. His neurologist didn't seem to think there was any reason not to do the surgery, despite my extreme hesitation. He had the surgery, and his cognition has declined rapidly ever since. This may have happened anyway without the surgery, but we have to admit now that it was a failed attempt. His movements and cognition have declined since the surgery. I would say that the DBS surgery had a good deal to do with his mental decline. I hope that is helpful to you.

By EachDay On 2014.09.14 11:06
I am so sad to hear about the difficulties your husband is having. My heart aches for you. I agree that there is no way to know exactly what causes any of the changes. Your reply will help me to stay firm with our decision since our neurologist also did not think it was really a problem.

By moonswife On 2014.09.17 00:43
EachDay,
I would like to respond to both Witsend and to you. My husband has probably had PD since the middle 90's. His original diagnosis was essential tremor, and later PD. By 2008 (he was still working) his tremors were so bad he lost over 100 lbs shaking. We investigated DBS, were allowed to apply to Kaiser Permanente candidate group and he started the mental and physical tests. They do VERY few surgeries. They are the largest insurer in California, but only do one surgery a week. 50 a year, on Mondays except Christmas and New years week. He passed all the tests, had the surgery in January of 2010 and it stopped his tremors in their tracks. He went back to using power tools, restoring cars, building teardrop trailers. But PD marches on. With or without the surgery most have some cognitive issues (except Al and olpilot, who are sharper than anyone I come in contact with). Would he, if he had to choose again, have the surgery? Absolutely. Has he lost some cognition......well, he beats most at Scrabble, but cannot process he needs to STOP outdoor activity this week as it is over 100 degrees. He fixates on a challenge, project, goal and his tenacity is unparalleled. And he does not see that. Hugs to both of you. Tough decision when you have two historically different results to the same surgery.


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