DBS - any advice


#1

My husband was diagnosed 14 years ago and has coped amazingly with everything Parkinson's has thrown at him. He has been had an apomorphine pump for the last 4 years which has worked well. The biggest problem for him is dyskinesia, and peaks and troughs of on/off periods and is now being considered for DBS in the next 6 months. The consultant has explained that he will still need to use the pump after surgery which we hadn't realised. Does anyone else have experiences of DBS they are able to share please.


#2

i was diagnosed with parkinsons 6 years ago aged 48. I am a patient at queens neurological hospital in London where this summer i underwent Deep Brain Surgery. I was the first person in the world to have a new type of electrodes implanted into my brain and the battery pack inserted under the skin on my chest.The battery now lasts for 25 years,where as its predecessor lasted for 5 years. This operation has reduced my tremor and limp which has given me a better quality of life.I still suffer fatigue and aches and pains,but i know longer get stared at or pittyfull looks when out in public places. Also, i can now type a text once instead of 4 times lol.


#3

I had DBS at queen’s sq a per your response above you may find you will be able to get rid of the pump it really depends on how successful the DBS surgery is. I was on 21 pills per day just for the pd and anything between 2 to 10 Apo-go injections per day mine was performed on march 7th 2017 in two operations probes march 7th battery march 11th switched on march 13th since then no more painful stiff joints, tremor greatly reduced, no distonia whatsoever. Pills wise now just 2 Madopar with 2 entacapone per day and no injections at all now. I can’t say I am pd symptom free but considering I am stage 4 advanced Parkinson’s I am much better than I was NO REGRETS WHATS0EVER go for it think you just might be surprised. I know it doesn’t work for everyone but think it’s worth a try xxx


#4

I was diagnosed 8 years ago & recently underwent DBS. I don’t mind admitting I was scared to death of the thought of having my skull drilled into but my life was getting so miserable & I thought I can’t carry on like this so I went for it. The actual operation where they drill into the skull is weird but painless & you are awake. The second part where the battery is inserted you are put out. The most painful part was putting the frame round my head so the surgeon can position the drill correctly. I was in for 3 nights in all & my life & confidence has improved tenfold. Any procedure has it’s risks but for this op they are minimal. I haven’t had a pump so I’m afraid I couldn’t comment about whether you’d still need one. My meds have been halved & I’ve gone from every day being a bad day to the occasional bad day now and again. I now can say to friends that I can meet them instead of I’ll see if I’m well enough that day & pray I don’t switch off on the way. I hope this helps?


#5

How do you find the 25yr rechargeable dba as I had battery changed over yr ago .Medtronic over 6yr I was advised to stay away from rechargeable as they were still ironing out problems just like a update


#6

Dba sorry spelling mistake Bobby that’s so weird I’m 47 in July had mine 6yrs .At Bristol where your totally asleep for the whole operation meaning less stress and damage to the brain. Had battery changed after three yrs as on high voltage but now a lot lower.


#7

I had a persistent and exhausting tremor on my left side, just over two years ago I had a dbs op in Addenbrookes and for a while it worked well. However over the last year or so a really bad tremor has started on the right side! I have been going back every two months to have my consultant shake his head and shrug his shoulders totally perplexed! Even the left side is starting up again. So, what next? Has anyone experienced this?