Husband with parkinsons & recently had DBS


#1
Hello - my husband is in his mid 60's has had parkinsons for 12 years or so & had DBS this summer to try & assist where medication was leaving gaps. Thankfully the surgery all went well, but we have been quite disappionted in the outcome as 6 months later we are still trying to see a positive result from the surgery. Has anyone else had this experience? We could do with some other comparisons. Thankyou, this is the first time I have tried a forum & I hope what I have written makes sense!

#2
Gill
Welcome to the forum. I hope you find this place as helpful and supportive as I have done. I was dx 8 years ago aged 39.

I'm sorry that you have not seen benefit yet from your husbands DBS surgery. I don't know much about DBS but I am sure that some of the other members here will be able to share their experiences.

Elegant Fowl

#3
Hello gill and welcome.

I have no personal experience of DBS but met the mother/carer ofa young man who had no benefit from the operation at a parky support group. At the same meeting there were a slightly older couple, the pwp was on his first social outing in 2 years after having had a good outcome from surgery.

#4
Hello. My husband, who is 61, had DBS surgery October 2011. Unfortunately things didn't go too well and he began to lose balance quite badly. The surgeon felt that one of the electrodes was in the wrong place so he had it re-done in April of this year. We are still going back for programming and have not yet succeeded in getting things right. It seems that when they get his tremor under control, his speech is affected. I have now asked for another programmer to have a look to see if she can give any input. Also we are not that confident in using the personal patient programmer. I have read though that it can take up to a year to get things right as the stimulator has to be fine tuned to tie in with the medication. If you would like to email me I am more than happy to chat with you about the situation if it helps.

#5
Hi gill mb
As with all surgery there is doubt,sit and wait,what works for one doesn't another but there's also the risk that it could gon
Wrong .my little daughters went wrong"she had surgery. No ne'er legs in five places the cuts should havev been bfive cm but they were massive she as really bad nerve pain for the rest of her life.im in lots of pain also and felt really down.
Today I'm glad I've got pd ( never thought I d say that) .i stay up because I can't sleep because of multiple. Pains .the wife had left the washing machine on before she went to bed.but she'd also put the microwave on for of ur mins.after the washing cycle finished I heard the microwave still on and about to burst into fllames.it would have wiped the whole family if I'd gone to bed.everyday is a gift.
John

#6
Welcome gill, best wishes to you and your husband :smile: