Another DBS Question


#1

Hiya, got switched on yesterday. Just want to ask those of you who have had DBS; do the wires going down your neck sometimes tighten? Also my battery sometimes feels like it is stinging, is this normal?


#2

Obviously yes.


#3

Hi @MrsPD,

I know you’ve directed this question to people who have experienced DBS, however, the fact that you’ve mentioned that you sometimes feel like the battery is stinging is a little concerning. My advice would be to raise this with your GP as soon as possible or call NHS on 111 to get this looked into.

Please remember that our helpline is also available to answer questions like this as well. Do give us a call on 0808 800 0303.

Best wishes,
Reah


#4

I had my done in december - I believe you had yours done in January? to be honest the road is long - I am having my best day and feel very positive - yet i can’t still use left hand scarring on right of head is stinging and when I charge my batteries it stings. However, I would still ask your consultant if its normal


#5

cant use left hand


#6

Not being funny but glad it’s not just me!!! May I ask what setting yours is at?


#7

Also did you ask your Consultant if it is normal to sting when charging battery?


#8

i m trying ti find notes having worse day yet x


#9

Sorry ti hear that. May I ask does rhe wires from the head to your battery tighten sometimes??


#10

you need to keep carefully moving head and stretching neck so it settles without restriction. I’ve had further adjustments and a bit dystonic and at other times dyskinetic but most settled so far. How are you feeling?


#11

Up and down at the moment, it sure is going to be a long road. I am just worrying about work.


#12

I’ve not been able to work for some time - thankfully, my husband is running our business. I’m hoping I get to a stage where I could potentially work again - although right now there doesn’t seem to be much light :frowning: It’s all so exhausting!


#13

I seriously do not think DBS is working on me, I am going backwards in stead of backwards. Surely there should be a little bit of improvement??? Waiting for DbS Nurse to call me back. If she tells me to take more meds, I shal! Scream. No point in Dbs. How you doing?


#14

Sorry I mean I feel I am going backwards instead of improving.


#15

sorry I don’t seem to get notifications. I was exactly the same and fell into despair crying all the time exhausted felt that the risks outweighed the benefits and that I shouldn’t have had op. However, I have had another adjustment i am back on medication but started back on 125mg madopar every 4 hours and gradually decrease to 62.5mg and I have to say things are more settled at the moment … hang in there x


#16

Hi

Wife had DBS in May 2015 at the RVI, she gets pain in her boob from time to time and the wires do tighten from time to time hers release when she moves her head and neck.

In my wife’s case she would ring the DBS nurse as she has found the 5 Doctors at our practice know nothing about Parkinson’s never mind DBS. As for NHS 111 in the north west they’ll send an ambulance and send you to A & E.

Our son went to Uni got to know medical students who told him in 7 years of training they spend 2 hours on
Parkinson’s.


#17

Hiya, what would happen when your wife went to A & E???