Urgent DBS advice needed please

Hi, I realise this is no place to ask this question but have been unable to get help through more official channels.

Has anybody here experienced DBS failure? My partner’s controller says it suddenly has “no programs to run”. We can see the hospital tomorrow about this but how do I get my partner through the night? Have tried giving more L Dopa but it’s not kicking in and partner can’t swallow easily in this situation. Any suggestions pleas? Partner is in terrible pain.

Many thanks

Have just seen this I suggest you ring 111 for advice.

Hello tiredcarer
Is your partner ok?

Thank you for your original reply Tot and thanks for asking. Yes, somehow. Tried to get more meds into partner’s body – not easy as swallow reflex was pretty much gone. Managed to keep going until 7am when carried them to the car and drove to the hospital. Was highly reluctant to get 111 involved or call an ambulance because it would have meant being taken to an A&E that would have known nothing about DBS and probably would have pumped partner full of strong painkillers which may have just slowed down metabolism and stopped any hope of PD meds being absorbed, as we have noticed in the past. (Even after initial DBS surgery only paracetamol was used as a painkiller because opiate PKs seemed to slow the absorption of PD meds.) Anyway when we arrived at the hospital the next day, DBS was returned to working order and so was my partner, so to speak.

The most worrying thing was having nowhere to turn in this situation. Expert help is not available 24/7. The correct course APPEARS to be to temporarily add extra L-Dopa to try to compensate for the lack of DBS but it is very tough when you cannot swallow, and we are not medics; so I would not like to say this is going to be the correct course of action for everyone.
Thanks again

I am so glad to hear you managed. With hindsight I should have suggested you call 999 but 111 was what came instantly to mind. Sorry I couldn’t give you a better response.

I understand your views on either the 111 or emergency services. I suspect if you ask what you are meant to do in this or similar situations should they arise in the future, you will be told the same as me ie I contacted my specialist hospital first who told me to go to my local A&E.
However the local hospital did then contact the specialist centre; perhaps they would have done the same with your partner.

It sounds like an absolutely horrific situation and it must have been quite frightening for you both. It’s sod’s law these things always seem to happen at the most inconvenient times such as the early hours of the morning.

Thank you for the update - hope life is a little less dramatic for the foreseeable!
Best wishes

Thank you Tot, I appreciate your thoughts and kindness. The local hospital might have been an option, from what you say, but I have endured a lengthy fiasco myself there, so I don’t feel confident it would have been able to contribute anything worthwhile.
I’m only glad it was a Thursday and not at the weekend…
Wishing you all the best.

What type of system does your partner have, my wife has a Boston rechargeable gave a strange fault code one night. Found out all she had to do was switch system on and off to reboot but don’t take this as gospel.

After the system is fitted your not given any handbooks etc. Which would be an advantage

Hello tiredcarer
It’s amazing how much reboots by switching the device on/off. If you find yourself in that awful situation again it might be worth trying GentechE1’s suggestion if your partner’s device let’s you do this

Hi, sorry for the delay and thank you for your responses GentechE1 and Tot.
GentechE1, yes it is a Boston with a rechargeable battery. It came with a brochure that doesn’t tell you anything in several languages. It wasn’t really a case of turning it on or off though according to all the computer department bods I have worked with, that fixes most problems with any device. The programmes had disappeared. We did try several options but there wasn’t anything to reboot as such. It was the lack of anywhere to turn in an emergency that was the most disturbing aspect of the whole palaver. But all is back to what passes for normal in our lives now with no apparent ill-effects.
Thank you again
TC (no relation to Top Cat)

I can understand that not knowing who to go to or how to get help was your biggest worry at the time but has anybody been able to tell you what caused the problem or even may have caused it. Programmes don’t just disappear. More to the point have you been told what to do should it happen again. Anyway it’s good to know normal business has been resumed and long may it be so.

1 Like

Hi @tiredcarer having just got back on here, my recommendation would be to contact the hospital who fitted the DBS even if you contact their secretary. There should be comprehensive operating instructions for all eventualities I suppose it depends on how efficient your hospital is !! I am quite impressed with Bristol so far so we will see.

As it stands i’m due to have my St Jude replaced by a Boston Medtronic at Bristol but we have insisted that we have full written instructions. The Operation is due to take place on a Friday which was when I had my current one fitted but at the end of the day. Baring in mind I was still coming round from the op I had the Consultant stood beside my bed telling me how to operate it before disappearing off for the weekend !! NO written instructions were issued but some of what the Consultant said must have gone in as I did muddle through with it. We eventually got some instructions printed off by my Neurologist and have recently had a brochure from Bristol who now deal with St Jude. My op is due to take place in the morning and should only take about an hour so I should be awake and alert to absorb instruction but will insist on written ones.