Decline since DBS Operation

My mother had the DBS operation in October 2017, she was switched on in November. At first she showed many signs of improvement and overall her life massively changed for the better. She has been back to the doctor several times since November and they have switched her up more or less each time to find a balance with medication however since beginning of March she seems to have rapidly declined and now its as if the operation never took place. Her tremor is terrible and her medication is not working. When it does work it only gives her relief for 20-30 minutes. She has been back to the doctor who tried to switch her up fully, nothing happened, and I think at one point the doctor suggested having to have the surgery again as there is no way of checking what’s wrong.
Has anybody had any experience with anything like this before?

Hi @Pocohontas,

A warm welcome to the forum.

It sounds like your mum has had a terrible experience with DBS following her operation which I’m truly sorry to hear about. You mentioned that she went back to her doctor, however, has she tried speaking to a Parkinson’s nurse? Parkinson’s nurses have specialist experience, knowledge and skills in Parkinson’s and may be able to offer your mum more information and support that is specific to her situation.

If you contact our helpline, one of our advisers can arrange for a Parkinson’s nurse to call your mum back in 24 hours. Please give them a call on 0808 800 0303.

Do keep us posted on this.

Best wishes,

Sorry to hear what’s been happening to your mum.


Hi as your mum gone back to dbs nurse to re-program as you mentioned your doctor as he can only put up & down I went back about 8 times within space of 3months to alter my frequency even had couple of overnight stays stick with it I’m sure that light bulb moment will happen. Where did your mum have dbs surgery

Hi Pocohontas,

I had my DBS fitted September 2013 at Addenbrookes and they switched me on before being discharged instead of three weeks after the operation. Fortunately all went well and I had three monthly checks on the settings to start with which then moved out to six months. My medication is 4 x 250mg Madopar per day, other wise everything went well although i’ve still got a Dystonic Tremor which the Consultant at the time poo pooed it has Parkinsons. Recently(March) I had the battery changed but I seem to have a tremor develop in my left leg when i’m at rest but all being well this will get sorted when I go to see my Neurologist next month. Hope your Mum gets the necessary help she needs asap to restore her faith in the Health system.