Experiences of DBS


#1

In the next issue of The Parkinson we’re hoping to include an article about DBS and want to hear from people who’ve had a range of experiences of the procedure.

I’ve got quite a few examples of positive results – and a few more would be great – but I’d be particularly interested to hear from people who feel their results haven’t been as good as they’d hoped.

If you’d prefer, you can email directly vhancock@parkinsons.org.uk.  

Thanks!


#2

I was diagnosed in autumn 2010 aged 60 with pronounced tremor being the main symptom.  Tried most drug treatments with always the feeling that Parkinsons was accelerating and winning. Chance remark about DBS from Parkinsons nurse had me looking into it last year, calling the nurses at Frenchay to see if I was at all likely to be a candidate for DBS. Was looking to hear primarily if age might prevent me being the one in 10 that are suitable.  I asked my consultant neurologist to refer me, and was first seen at Frenchay in November 2013.

Research showed me that tremor was the symptom most likely to be helped, But I would need to be without depression, or other ailments.

Then the treatment and assessment started to accelerate, despite being told that I should expect to join the 8 month long waiting list.  I'm not sure if things were pushed on faster by the nearing move of the neurosurgery unit to new premises at Southmead later this Spring.  The next contact was in mid January inviting me in as an inpatient over 2 or 3 days to further the assessment in early February.  This appointment was at the mercy of the bed manager who I had to call on the morning of admission, and after a few phone calls was arranged to be as an outpatient the following morning.  So I had an intensive day long session when all of my movements, dexterity, and levels of cognition were tested, which convinced me that I was wise not to try to tread the boards as an actor - the whole thing was videoed, both before any medication (which I stopped the previous day) and after.  Results were conveyed to the consultant neurologist, who told me that I was a good candidate for DBS. 

I'm not sure if I had ever been a suitable case for anything in my life before, and now I was a suitable case for brain surgery.  Would I wish that on anyone!

Suddenly, out of the blue, in mid February I was called to see if could come in the following day, for surgery the day after!

It seemed too good an opportunity to miss, with the only reason not to attend was the lack of mental preparation  -  which I realised was a blessing as it shortened the worry time.

So after an uncomfortable night was under general anaesthetic for the scans by 9am,  It seemed I had 2 scans as I coughed during the first one, so was 'out of it' for about 6 hours.  I think another sort of scan also took place, and the results were cross-referenced so the electrodes were precisely placed when the next part of the surgery took place, two days later.  

That was Thursday gone.  I went home then returned on Saturday morning., very comfortable with my treatment and response to the general anaesthetic, in no pain at all.

Presuming everything went well with the placing of electrodes joined to the battery just below my collar bone.  I briefly met the surgeon before I went under, who casually mentioned which leg I was having removed (briefly I was stunned in shock until I realised it was a joke). 

Slight discomfort with lots of bruising over and around my eyes, in technicolour times two, ready for the continual monitoring around the clock until I was allowed home on Monday night.

 


#3

Had my dbs operation in feb 2013 it was the best thing i had done,i would say never give up with this op as it took me a year to get the right settings . AND I WOULD LIKE TO SAY A BIG FAT THANK YOU TO ALL THE STAFF AT FRENCHAY HOSPITAL BRISTOL.  ps thanks caroline my surgical movement disorder nurse specialist for never given up on me ,also big thanks to dr alan whone & prof gill and his team for keeping me asleep for the whole operation from start to finish.


#4

continued...  Stitches on top of head removed after a couple of days, and tape around area below collar bone where generator was planted within a week.  Some very strange sensations on top of skull as it felt like itch below the skin that was numb on surface, so scratching didn't help.

Tremor has intensified, and is bilateral - enough to need a beaker with spout - how or why I do not know.

Presently waiting to be turned on and tuned in on 8 April.  No way of knowing if reduction of tremor has worked, for it surely will make for a social life that is largely on hold at present.  Recommendation also on hold until then.


#5

after having dbs surgery for some unknown reason you feel great for a while this is due to swelling of the brain due to opp,when this subsides you will get tremor back! .hope stephen your tremor goes when you get switched on,it can take several visits to get it perfect so be patient whos your nurse ,all the staff at frenchay will never give up untill they make you pd easier to manage so hang in there it can get tough but you can aswell.try rubbing some cream on your head helped for me ive got the same problem a little thin up top wink