Dbs recovery experiences please

Hello everyone,

my lovely hubby is having dbs on 8 December. He’s only having one side done because of his age (over 70) and his cognitive assessment which was excellent in all areas apart from speech and memory. So he can’t afford to lose any brain function which might occur with bilateral.

We were told he would be coming home the following day and obviously I am very apprehensive about the op, the risks and the outcome but I’m not sure what to expect in terms of how he might feel in those first few days after surgery. 

Could anyone share their experiences please? Both those who’ve had the surgery and those who cared for them.

thank you x

Good Evening,

I had DBS, Bi Lateral, installed back in July this year. I went in teatime on the Wednesday and was home by Friday teatime. The general anaesthetic side effects lingered for a few days, I  was constantly loosing my thread in conversations, don't let that panic you, all good now. The build up process to the op can be quite draining not only for the patient but also their nearest and dearest, consequently the sense of relief is huge following the op. Roughly week two onwards the brains reaction to the operation is often positive, this honeymoon period left me pretty much symptom free. It wanes gradually, bearing in mind I didn't get switched until 6 weeks post op. 

In terms of risks my Parkinson's Nurse assured me that no one gets as far as the op if even the slightest thing pushes the risk beyond the norm for that individual.

I was switched on in August and have since been able to cut my pill intake down to only 25% of the pre op level. I started back to work full time in post op week 7.

If you'd like to hear my Wife's experience of my DBS feel free to send a PM through this forum.

Which hospital will be doing the op? Do you know which make of unit they will install? Mine is Boston Scientific with "steerable" current electrodes.

Best wishes for the outcome we all aim for. 

Regards,

Tractorman.

Thank you tractorman, that’s all very good to know, especially the reassurances from your parky nurse.

my husbands dbs is going to be different from most I think in that it is only tagetting tremor so I don’t think it has any impact on the other parkys symptoms and unfortunately we don’t anticipate having a reduction in meds. That would’ve been good as he has dyskinesias but we are pleased to have the opportunity to regain the full use of his right arm. And because frustration fuels his tremor, if he can hold the phone and type etc then his frustration will be less and that should help his overall symptoms and perhaps he might get by with a few less meds. We will have to wait and see.

he is having op at queens in Romford, where did you go? It seems length of stay varies around the country. Was your wife allowed to stay in with you? 

thanks for taking the time to help, much appreciated x

Hi Mabelsmum,

I went to the John Radcliffe Hospital in Oxford. I think the stay in hospital is kept as short as possible to reduce the risk of infection, and providing there is suitable and sufficient support at home why not? We were never asked about my wife staying in too. But I reckon I must have been off the ward for 5/6 hours so my wife was much happier to keep busy at work.

Happy to  help. If you think of any other questions please don't hesitate to ask here or PM if you wish.

Regards,

Tractorman.

Thank you trsctorman. I don’t know how to pm but James would appreciate a chat with you if possible? He was a farmer so you may have some 4wheeled things in common! 

Hi Mabelsmum,

If you wish to send another forum user a private message you can do so following the instructions here: www.parkinsons.org.uk/content/messaging Please do let us know if you have any issues to send your message so we can help you further.

Best wishes,
Mara (Moderation team)

Hello!

If your husband would like to speak to someone who has been through DBS, may I suggest that you get in touch with the Peer Support Service via the Parkinson's UK helpline. Several of the volunteers, including myself, have had DBS and will be happy to share their personal experiences.

All the best,

Parklife 

I went through DBS in September 2013 at Addenbrookes, Cambridge, went in on Sunday afternoon and had operation done Monday(I was under for seven hours during which time I was due to take medication, so someone went to the ward, got it, I took it and didn't know a thing about it !!), they fitted the St. Jude system to me.  On the Tuesday morning I woke to find my Consultant sitting beside my bed tapping away on his laptop, he was switching on and setting up my DBS of which I wasn't expecting to happen for three weeks, could be that because I did so well recovering they decided to do it there and then.  I was released from hospital on Thursday a different man altogether although I still have a Dystonic tremor which has been with me for most of my life !!  Fact is they wouldn't believe that I could have a second tremor which I did and i'm proof.  To which they said, we can put you under again to rectify this, truth is they were convinced it was to do with Parkinsons and couldn't possibly be anything else which it was.  Going through the operation once is daunting enough without going through it a second time.  There you go, they know best.  All the very best to you Mabelsmum for a successful operation on your hubby to-day.  When he comes out he will look like something from a Mummy film but that aside all will be well.  Take care.