My husband had DBS surgery in 2005 when it was still relatively new. Instantly it affected his walking though it was excellent for his tremor. We went back to the hospital but was told it was just one of those unfortunate things. The years passed and we changed hospitals to one nearer home for his check ups. We were fortunate enough to have a PD nurse who home visited us every six months. Originally his symptoms were only on the right hand side but about seven years ago his tremor went to the left side also.
When she visited the nurse would check his settings and adjust them if needs be. She set them for the left side too on a temporary setting til we saw if this was working when his symptoms started there. Then, about three years ago, she increased the setting on the left side because his walking had deteriorated even more. Gradually his Parkinson's got worse, particularly his balance, and he started to fall regularly. This was a problem especially in the middle of the night when he could not get to the toilet. He had to use a camping urinal. There was no improvement in his walking either.We asked for and eventually got a second opinion as to whether the implants in his brain were in the right place. After investigation it was decided they were satisfactory. That was two years ago.
In the meantime his PD nurse retired and we were told there would be no home visits. For more than a year and a half we did not see a DBS doctor or nurse by our own choice because the hospital was 90 minutes drive away and what could they do anyway? Then, last May, I thought we should contact the hospital and arrange for him a checkup. I was informed that the department had a completely new set up with a new set of staff and they wanted to see us soon.
Three weeks later we were seen by the nurse running the department and she was a breath of fresh air. She wanted to see us again for a longer appointment with a view to reviewing his medication and his device settings. We went on holiday where my husband had a series of falls, one of which was very stressful. Luckily no hospital visit was required.
Then, about a month ago, we went for the review. We were seen by one of the new young nurses who thankfully was also a breath of fresh air. She looked at his settings and was immediately alarmed to see that the frequency (if that is the term)on one side was too high and said that this was the reason his balance and his speech had been affected. She adjusted his device so that both sides were the same and he felt an instant improvement. We went back two weeks later and she suggested he reduce his medication and he is now on a new regime and is taking quite a few less tablets than previously. He has not fallen for a month or more and feels so much better than he has done for the past three years. He can also manage to go to the toilet unaided in the night.
We thought we should share this with other people who have had DBS. It was only because there was a complete change in the set up in the Neurology Department at our hospital that these improvements to my husband have happened. Also it is years on from when he had his operation and I suppose there is more knowledge and experience with the technique. There are also questions I suppose should be asked about why these wrong settings were not picked up on when he went into hospital two years ago for tests to see if the electrodes were in the correct place.
I can't tell you how grateful we are to these nurses. They have given us a new lease of life and we are more optimistic about the future. He isn't cured and his walking is still a problem but he is much better than he has been for at least three years.The improvement in his balance is the bonus. Hope this has helped some people who may be experiencing problem with DBS.
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