DBS help please


#1

I'm hoping someone can advise me please.

my husband had DBS in May at Queen Elizabeth Birmingham. We went to be switched on 2 weeks ago but they thought he still had medication in his system so couldn't do it. We have been back today and it was still unsuccessful, they have done a CT scan but we won't get the result for 2 weeks as the surgeon is away.  

We are beyond devastated, has anybody been in this situation but gone on to a successful conclusion?

thank you

 

Karen x


#2

KAren

I have no experience of this.  But is it that they haven't turned it on yet or that it is not functioning?

Andy (Ojalahey)

 


#3
Can't judge it at least for some time after it is switched on

#4

I had DBS surgery in March 2015.

I am puzzled by: "but they thought he still had medication in his system".  This is such an important event in someone's life, that I am certain you and your husband followed  instructions to the letter and that he avoided medication prior to being switched on.

If you are having no joy with your contact within the NHS, I suggest you get stroppy and change to someone who can be of help.

Peter.


#5

Karen

How's it going with your husband's DBS .   i assume they've switched it on.

So has it helped him ?

 

Andy (ojalahey)


#6

Had my DBS November at Addenbrookes last year and electrodes were placed on both sides. It has not been easy, in fact my surgeon, consultant and nurses are perplexed by my reaction to it!!  The operation was for a tremor on my left side and was carried out under general anaesthetic and had to wait two weeks for the "switch on" - understandable as the brain has suffered certain trauma.  Since then, in spite of some good times when I felt so well and thought I could tackle anything, I have now developed a severe tremor on my right hand and left leg is off again.  The left arm is ok (for the moment). Those good days were wonderful.

I have tweaked till I am all tweaked out, I have tried going without PD meds; that didn't work because all the other symptoms got worse. Switched off, that was horrendous! Upping the amps to far makes my head fell weird!

I had a visit to the hospital couple of weeks ago for pains I was getting in my head and the tremor on the right side and after an hour or more there were three people shaking heads, shrugging shoulders, because and they will tell you they really haven't got a clue!! 

So what next, keep going, keep annoying the doctors, keep positive.......big grin

I might get a second opinion? Does any have any experience of having a second opinion?

 


#7

https://www.technologyreview.com/s/602488/injectable-wires-for-fixing-the-brain/?utm_campaign=internal&utm_medium=homepage&utm_source=features_1

sort of related.  Just adding it here as well as Research .

 


#8
Have tried all of the pulse strengths and all settings as i find this hard to believe as medtronics dbs system as over 100 different settings and the new Boston scientific device has more than that as it has more contacts on each wire making it have more scope on settings .the first year i had mine done i must of made at least tèn visits to tweak mine.i phone up bristol brain centre and they would fit me in within tops 3 days and even couple overnight stays to make sure i was ok next day.i would keep on at them

#9
Thats amazing david

#10

Sorry I've not posted until now, we are having a terrible time.

 After my husbands DBS they decided that the electrodes were not placed correctly and then he developed an infection - after a lengthy hospital stay and a further 2 months of intravenous antibiotics at home, they removed  everything in October 2014.

last tear we were told we could have Duadopa - 1 week before he was due to go in he completely lost his swallow - a lengthy stay in hospital followed and a peg fitted - obviously Duadopa trial had to be cancelled.

husband now at home - feeling dreadful and life is just horrible.

I hate Parkinsons!!!!

 

Karen 

 

 


#11
Sorry to hear this did they not other dbs again reasons why.

#12

Hi Karenb, 

Sorry that you've had so many problems to handle. It must be very difficult for you both.

If you feel that you'd like to talk to someone or need advice on any of the issues you're dealing with please do call our Helpline on 0808 800 0303 from Monday-Friday 9am-7pm and Saturday: 10am-2pm. 

Take care, 

Edwina

Moderation Team


#13

He's never fully recovered from the surgery Gus, think now he has early stage dementia - the most horrible 10 years of our lives X 


#14
That's so sad i sort of know what he's going through i felt useless when my pd got worse i have three children and all i wanted is when dày comes is play with my grandchildren walk my two daughters when get married you need to talk to him tell him he's still got lots to do. My dad passed away five years ago 86 great age he was the best.anyway have you tried getting referred to a different hospital bristol southmead brain centre has a robotic theatre guides the wires 0.2mm target it's worth a try.all the best