I am starting down the road of DBS, my Specialist is referring me as of yesterday.
He is going to enquire as to the best place to get it done, does anyone know where is considered to be 'the' place to go to?
I'm fairly centrally located so travel isn't a big issue.Assuming I get a choice of course?
Whilst I'm still waiting to be switched on, only had DBS installed just over 3 weeks ago, based on my experience of the process thus far the team at the John Radcliffe Hospital in Oxford have been superb. I've felt well cared for, well informed throughout. At no point have I had even the slightest cause for concern.
I had mine done at Addenbrookes Hospital Cambridge, I was under for seven hours and was switched on and set up the day after my operation, this was almost four years ago. Living where I do my nearest is Southmead Hospital at Bristol whereby they do the operation in about four hours. My battery was set to last for five years but they have had some only lasting three years so I am checking the power level on mine every two weeks with the remote control. With the system Bristol fit it is a re-chargeable unit which is totally different to mine and I may have to have mine totally removed unless they can adapt my battery to perform like theirs. Will see come the time.
Living on a Scottish island, Mull, DBS would have meant a slog to an English centre, but in April the national centre for DBS was opened in Glasgow. That's where my neurology team hang out anyway. I don't remotely need DBS at the moment, but it's good to know I won't have to negotiate border controls when and if I do.
Thanks for the reply. I go to JRH as part of a Rearch programme and they are always very helpful. I am due down ther next month so hope to question them further then.
It's quite a drive from N Staffs where I live, but that's a small price to pay if it means geting a good job done first time.
Good luck with your 'switch on', let me know how it goes, I would be very interested.
If you live in the Bristol area how come you went to Cambridge for your op?
How have you found DBS, has it made a difference for you?
Aylesbury, now here is a twist, I was born in Bletchley(sound familiar !!). Anyhow, later in life I changed jobs and moved to Peterborough hence having my DBS done at Cambridge. Back in January we moved to South Devon making Bristol my closest Hospital.
The difference having DBS done was instant, I was like a new man, gone was the violent shaking I was experiencing day and night and I could actually write again, before this I was wobbling like a jelly !!(I am happy enough to be able to take the mickey out of my condition which astonishes people, life is too short to be miserable, make light of the situation). The only downside, as i've said in other posts is the fact that the Consultant wouldn't accept that I had two tremors, the Parky and the Dystonic. He was blinkered to the fact that everything was to do with Parky, had he listened to us they would have sorted my Dystonic when doing the DBS but as always he didn't and when he realized I had, it was, "Oh, you still have a tremor, we can sort that and put you under again." That is all very well for them to say but it is daunting enough going through it the first time and am sceptical about something going wrong at the second bite of the cherry. We will see when my battery comes up for replacement and what can be done. Otherwise, life is good, I play Flat Green Bowls(in Leagues) and have, up until we moved, done Ten Pin Bowling but only socially with friends. I walk to town everyday to fetch a paper and am able to help my wife by hoovering for her. My side effects with Parky are, my voice gets emotional when I am excited about something and tend to stammer a little, I tend to talk very quietly, I walk like I am drunk, also I am prone to sometimes losing my balance and get a bit forgetful at times with things I use to be able to recall instantly.
That clears that up then, thought you had chosen Cambridge because your local wasn't up to scratch.
Glad to hear it's made a difference, you sounded worse than me though so the benefits will be greater I suppose? I am lucky (?) I have just the tremor in my left hand and slightly in my left leg, general slowness etc noticed in the last few weeks my voice seems to be fading as well. PD Nurse suggested DBS, Specialist didn't, as she thinks if the tremor was stopped I would be almost back to normal. I can still do most things, just more slowly and with more difficulty, fortunately I only write left handed everything else I'm right sided for. Hearing other peoples experiences I wonder if they will think I'm not in too bad shape and will turn me down?
ps: Aylesbury is the name of our place in Florida, not where I live.
pps: I have treated PD as a joke from day one. Worked for 41 years with barely a day off then was diagnosed with this a month after I took early retirement. That's a 'Joke'!!!
Aylesbury, there was me thinking you were a young Buck didn't think of the Florida connection but different all the same. Because of where we lived Peterborough Hospital was my closest point of referral and I wasn't given a choice of where to have DBS done but having said that, Addenbrookes is World renowned for its advances in Medical excellence. In fact, Papworth(the heart hospital) which is just up the road from Cambridge is being relocated into the same area as Addenbrookes so everything is under one roof so to speak as everyday people have to be transported there. My Parky affects the right side of my body and of course i'm right handed but I cope. Like your good self I had worked over 40 years and with very little absence and paid my dues into the system and yes, with the diagnosis of Parky I was Mentally Retarded oops I mean Medically Retired so now looking to getting my State Pension in five months !!
cc, how did you find the op itself, were you awake? Also how do you find the people at Bristol? I have spoken to a lady locally who had hers done at Sheffield and said they were excellent, so that looks a possibility as it's only an hour away. The other is Oxford where I'm on a research project, but that's a bit of a jaunt. Long way to go yet though,I might not even get accepted?
Yes I've always made light of it, what else can you do? I have a friend of 58 years who was also diagnosed with PD just before me, won't talk about it, totally depressed by it, not the way to handle it at all.
Aylesbury if you've watched the operation on tv you are given the impression that the patient is awake, this is not so. They give you like a date rape drug so as they know when they have hit the right spot with the wires but you don't know anything. With me, I was under for seven hours and within that time I was due to take medication, they went to the Ward and fetched it and gave it to me and I didn't know a thing about it. The people at Bristol are warm and friendly and they have an excellent Parkinsons section where you can talk to someone. Since joining the Forum I have found that I am one of those who haven't had the diagnosis for as long as a lot of the membership but I contribute where I feel I am able to without treading on any toes.
At the JRH, I was asleep for the fitting of the frame and the visit to the CT scanner. On return to theatre I was awake for the drilling of the holes, I was still awake for the insertion of the electrodes and the fitting of the "clips" to hold the electrode wires. They then connected the electrodes to the test supply and I had to raise my left hand for them to see it shaking and see it stop when current was applied to electrodes. They manipulated my right arm to check it lost its stiffness when current applied also. I also had to countdown from 100 in sevens! Didn't get too far but far enough to tick that box. I can recall most of what was happening during this middle part of the process.
Then for the insertion of the IPG and the leads down to it I was totally asleep again.
It seems to vary depending where you have the op carried out? Not that it's an issue one way or the other, just curious.
My neurologist told me I could have my operation wherever I chose, but suggested the NHNN in Queen Square, London, or Cambridge as being two of the best in the country. I told him that I wanted to be referred to the best - "that'll be Queen Square, then" he said. Whatever you decide, check out their complication and infection rates online. I certainly did, and it confirmed that I had made the right choice.
Queen Square is amongst those with the latest operating theatre equipment that enables the latest "asleep" operation - totally stress free. The only bugbear is having going back to London every time I require adjustment, but thankfully those occasions are becoming fewer now (operation was April 2016).
If you take a look at my YouTube channel (https://www.youtube.com/user/ianfrizell) you will find a playlist called DBS which has lots of informational videos about the operation, including one of my neurosurgeon (Ludvic Zrinzo) performing the "awake" operation at Queen Square.
Thanks Ian, I'll check the infection rates when I get some suggestions from my Neurologist, hadn't thought about that.
I'll also take a look at your channel.
It may come be a surprise to some but DBS surgery is carried out in the North too. Wife had her op at the RVI Newcastle great care in 0730 Tuesday out 1200 Thursday. All switched a little tired but no side effects. Great care can phone up th Parkinson's helpdesk and speak to Parkinson's nurce that day. She was fitted with Boston rechargeable unit.
Thanks Genteche, Sounds like your experience was a good one?
I live in North Midlands so I'm hoping for somewhere a bit closer.
Thanks for the reply, it's true that the world doesn't end north of Watford Gap!!
You say LONDON NNN is 'amongst those with the latest op equipment".
Do you know where else has this latest equipment?
Enjoyed a few of your videos lately … very informative …!
DOES anyone have any experience of Liverpool Walton or Sheffield Royal Hallamshire re DBS please?
Addenbrookes, Cambridge is where I had mine done in 2013. You could also look at Southmead Hospital, Bristol, unfortunately @OjalaHey I have no experience of the hospitals you mention.