Feedback regarding DBS


#1
Hi. I'm new to the forum. I'm seeking help in relation to DBS. My husband was diagnosed with Parkinson's 10 years ago at 47 although looking back he probably started with it at 42ish. He didnt have much of a tremour but struggles quite bad with movement especially walking. His speech is affected and he gets very drained and exhausted. He works so hard as we have our own business and the business has motivated him to keep going and he has not let the condition rule him. He's managed the condition quite well with heaps of medication until about 18 months ago when he deteriorated and was on maximum meds. From Sept 15 he went through assessments for DBS. He was a suitable candidate and the 9 hours op was carried out on 4th July. Following the op my husband had a small bleed next to one of the electrodes which obviously had some consequences for him but he is a lot better from the bleed. The device was switched on in August and started at 1.0v. He has increased the voltage 0.1v every 3 days. He is now at 4v. The specialist DBS nurse has said he may not be able to go over 4.5v. The surgeon said it could take up to 2 years for him to get over the operation. He has reduced his ropinerole to 20mg and has stop taking the co-bendelopa. We thought after the op he would feel so much better but but hasn't happened. He still goes OFF many times in a day and feels and looks exhausted. it's taking time for his meds to kick in and he's still going OFF quickly. He does get dyskinesa when the meds kick in hence him stopping the co-bendelopa. We cant understand whether the DBS will work anymore effectively than it is now. He only has a 0.5v more increase. The DBS nurse says it will take time and to let his body get adjusted. I'm exhausted myself trying to keep him positive and every time he goes to a full volt we think it will make a big difference bit but it doesn't. Does anyone know any time scale for DBS effectiveness or could give any words of advice.

#2

So sorry to hear that this hasnt been as successful as you were hoping. 


Parkinsons UK have a mentoring scheme where you can get help and advice over these sort of issues.  Have you tried contacting them?

Good Luck with the DBS.

 

 


#3

Hi Lytham Lady,

I'm sorry that the procedure hasn't yet produced the results you both hoped. I'm sure other forum members who have had the surgery will reply with their experiences to give you an idea of timescales, even if everyone is different. In the meantime, please feel free to ring our free helpline on 0808 800 0303. Our lines are open between 9am-7pm Monday-Friday and 10am-2pm on Saturdays and our trained advisers will be able to chat about DBS or point you in the right direction if you need further information.

Of course, you can also sign up to our peer support service, as OxfordGills suggested, to be put in contact with someone who has experienced the same as you. You can find out more here: https://www.parkinsons.org.uk/content/our-peer-support-service 

I'm sure you are already familiar with most if not all of the information contained in our Surgery for Parkinson's booklet, but here you are a link to it just in case there is information there that you didn't have: https://www.parkinsons.org.uk/sites/default/files/surgery_for_parkinsons.pdf

Best wishes for you and your husband,

Mara
‚Äč(Moderation team)