DBS I am having a tough time


#1

Hello,

In March 2015, I had DBS installed.  It was switched on late April.  Since then, I have had two further programming sessions.  Each time, I was able to walk without medication, my arms would swing, I would smile, life looked encouraging.  However, pretty much the next day the gains were lost. My brain had fought back to nullify the work done.

At the moment, almost four months after switch-on, my PD symptoms are worse and I am taking more medication.

Has anyone else suffered similarly?

Peter.


#2

Hi Peter,

Thats very disappointing for  you and not what i wanted to hear just days before i go for my surgery!

May i ask where you had it done?

All i can suggest is that you pester the life out of your consultant - 2 programing sessions in 4 months doesn't seem like a lot if you are having serious problems.

hope you get sorted soon 


#3

Southmead, Bristol.


#4

 

Hi Peter

It's a shame this has happened to you, were you not informed of the complications etc., that may have occurred after your surgery? If not I would take it further.

We have one lady at out parkinsons meetings who has had this done and she is so pleased with the outcome, where she used to have spasmodic movements, the difference in her now is amazing.

Please don't give up on this - Regards Sheffy


#5

Hi I may be being a bit thick but what is DBS


#6

DBS stands for Deep Brain Stimulation.  Used to suppress and/or alleviate symptoms in people who have suffered from PD for a long time.  It involves inserting some electrodes into the brain.  A very low electric current is passed through the electrodes via a little box of electronics embedded under the skin just below the collar-bone.

There is an article on the subject in Wikipedia.

Peter.


#7

Thankyou Peter, I had heard  something  about it,was having an off day but thankyou  for the information 

Martin


#8

hi martini

i also had mine done at frenchay which is now southmead ,myself had same problems in the end booked me in for overnight so they could see me next day done a bit of tweaking with meds & dbs all went fine. I went back & fourth about 8-9 times so don't give up your get there in the end & don't be afraid to phone them for re- programme.You can message me and i will give you my number for a chat as not to could at typing.


#9

My last visit involved staying three nights in hospital.  Two of the nights I was medication-free and was wheel-chaired to the Brain centre for tweaking in the mornings.  The nurse did a good job of tuning me.  However, her hard work just wore off over the next day and I was left rather frustrated.  I am having a six-month assessment next week, I'll see what more can be done.

Peter.


#10
Your be fine I was really bad about 3 weeks ago as I went up to brain centre to see if they could get my walking any better as going holidays in 14th September so went in and my nurse mange to get walking bit better but said she thinks my medication wearing off to soon so went home that day by 8 pm that night my shaking was back went to bed sleeping tablet woke up next morning all was calm so my wife went to work 1 hour later my shaking was back my head was going got out of bed could not walk thought I was going to phone ambulance but got my wife home my daughter and her boyfriend hes a school teacher phone brain centre they said would wait till got there stopped meds arrived 2.30pm talk nurse and wife to hold me up but me back to old settings ok again she said will wait for dr whone as he was on ward rounds see me 6.30pm I said yes what about you nurse said not a problem dr whone came agreed my meds were wearing off to quickly but me on entacapone said thanks to both of them for staying on Friday night 7.30ish let nurse know how tablets working by up to date emails it's been a couple of weeks now and I have seen improvement already so don't give up peter .all the best keith

#11

Hi Martini

I too have had DBS at Southmead, with a similar response to yours when getting the device re-programmed.  I originally had Medtronics installed, but after a few months developed an infection on the site, as well as several side effects - like bleaphospasm  (Sp), although tremor was largely controlled.  So in February 2014 I had a new device fitted, made by Boston Scientific, called Vercise - again followed by reprogramming difficulties, despite having BS agent on hand to advise.  Presently I have switched off the device, now into 6th week, strangely the tremor is still largely controlled, and other side effects continue, which begs the question: does it continue to work even when it is turned off?  Also the debate is yet to come, which is do the electrodes need repositioning?

I wonder what device you have?


#12

shakingsteven

                          if my device was turned off ! my life would not be worth living !


#13

Hi ShakingStephen,

I have a Medtronic device installed.  Immediately after the operation, I was told by the surgeon that the electrodes were installed in exactly the right place.  I wonder if there is more than one "right place"?

Anyway, my medication has now increased by 50% over what I was taking before DBS.  My stimulator is still switched on.  I have switched it off a few times for an hour or so as an experiment and could not feel any difference.

Peter.


#14

Have you tried going back for re-set ,also when you have had dbs for a year you go back in hospital & stay overnight with no meds & dbs turned off ,then the next morning re-program ,new amount of meds .This was very good for me i could say that it was the turning point  !  dont give up sorry to butt in on conversation 


#15

Hi again Peter and Gus

Thanks for the rapid response.  I've been back for stays in Southmead several times, either with or without meds..  All with similar effects, except one period when I was shaking so badly I had to be fed (which my wife now reminds me followed the infection of the first (Medtronic) device) so I only had the electrodes and wiring from ear onwards still in place between March and August.

'Right place' seems to vary, including calling it 'optimum position'. Which for me has not changed - even though it is now controlled by the 'more sophisticated' device from Boston Scientific) so the same electrode position is being used, although we should remember that we are talking about an area the size of a grain of rice.  What they failed to tell me about the new device was that no MRI could be used with it, which would make repositioning difficult/impossible.  Which reminds me that there is a significant disadvantage to being under general anaesthetic as opposed to local when finding the right place.

I was not expected to be able to bear the device being turned off for more than about 3 days, so imagine their surprise when I reported that I had turned off for a week, initially, then going on 6 weeks now, without great difference.  I've still been afflicted by the eye closures, which can happen as many times as 150 in a day, and never fewer than 70 times, although presently waiting to see what happens after the latest injection of Botox into my lids.

As for medication, I have kept about the same, which is 5 Sinemet daily, including one slow release at night, 2 Trihex, 1 Pramipexol - the latter deals with restless legs, and good old Paracetamol.  So I'm shocked to be told yours has increased by 50%. It would be interesting for you to discover how much longer you could be turned off...

In solidarity, Stephen


#16

Stephen

                 so sorry to hear your not getting results you would like,my dbs says on 24 hrs if i turn it off would have no control of my body, the two devices i thought were the same just boston having more scope ,as i was always told going under mri was dangerous but can be done only if really needed. 


#17

Probably of interest to all DBS patients is a recent  article on www.medscape.com. Once on this site click (left, top corner ) on Parkinson's Disease, which gives you an article headed by the sentence :" With DBS for Parkinson's Disease Implantation Sequence Matters....".


#18

can not find it in top left corner


#19

had to click on neurology found parkinsons then does not let you read have to sign up !


#20

I had DBS switched on in February.  After a good start,  when my walking and the off times greatly improved, I am having a tough time.  I had DBS at John Radcliffe in Oxford.  The DBS system is made by Boston.  The stimulator has turned off 6 times.  On 5 occasions I found out at night that the Stimulator was off as I could not move without a lot more help.   I am going for a check up on Wednesday and hopefully someone from Boston Has anyone had this experience with the Stimulator?  I am going for a check up on Wednesday and hopefully someone from Boston will be there.