After a long time (I was diagnosed in 2012) I have now got a DBS assessment at Bristol Southmead coming up next week. If anybody on here has been to Southmead I would be interested to hear what they thought.
The closer it possibly gets the more daunting it becomes! I have read up a lot about DBS for ages now and the thought of wires being poked about in your brain and a gadget implanted in your chest are hard to imagine. But things are rough when I am OFF nowadays, I wouldn’t be considering this otherwise.
I have read many posts on here and know some people have not had great experiences with DBS. But also I know the majority of cases seem to benefit from the surgery. Anyway I might not even be suitable yet so I’ll wait and see.
Good luck - for me the chest implant hurt the most but the swelling goes down - i barely think about it now - stay strong & have faith in the medical staff - they are truly amazing.
I’ve had mine done for 10yrs now, the best thing is your asleep the whole operation as they have half the best technologie out there they do there mapping 3d 4d something and a robot guides the wires within under mm .I had the medtronic device, i know they fit the boston which was not available when i had mine but was offered itwhen i had my rechargeable battery fitted, but i stuck with what i knew they have come on leaps and bounds i would have a chat with them what one’s available and pro and cons. The team are the best nothing too much they go the extra mile ,but do remember not every one is excepted .i know if i didn’t have it i would not want to here.Its not all plane sailing it takes time to get your meds & dbs settings right. All the best it’s a no brainer.i got my life back
Thanks for all your info Gus. I’m ok with it taking as long as it needs to, especially if there is some improvement. It’s good to hear that the staff are so good, and it’s great that your experience is so positive. Good luck for the future!
Graham.
Hi @grahamp62 , I come under Southmead now i’m living in Devon and the staff there are first class, have no fears as everything will be explained and you will have a better quality of life. Yes it is daunting thinking about the operation as we explained to the Consultant, he does it every day without batting an eye. Personally the first time I went for it(which got cancelled) I broke down fearing the unknown but when I went in for it I adopted a gung ho attitude & said, let’s get on with it !! I had a St Jude fitted at Addenbrookes, Cambridge but because the Consultant didn’t listen to my wife telling him I had TWO Tremors, he poo pooed it. So i’m left with a Dystonic tremor, the Parky one is controlled by the DBS.
Southmead have now fitted me with a rechargeable one, no problem whatsoever. I made the mistake of having my battery fitted on the left side of my chest which covers the heart as I feared it would interfere with my right arm but it doesn’t, the only thing is with having it on the left is that I have to turn it off when I have an ECG done as it affects the machine !! If you fire guns and you’re right handed then you should opt for the left side. It is a good chance they will fit the Boston Medtronic which is rechargeable even though they have now included St Jude. Keep us posted on how you get on. Take care.
Hey Les, thanks for the reply. I’m pretty sure the device they are using now is the Boston Scientific rechargeable one. I hadn’t really thought about which side it might go but I will see what they sat at the time. I’m still trying to keep from rushing ahead and I’m keeping in mind that this is an assessment not the actual event.
I hope that I don’t bottle it at a crucial moment, I don’t think I will but it’s not exactly a regular type thing to deal with. Cheers and the best of luck for the future! And I’m also in Devon near Newton Abbot.
Graham
Hi Again @grahamp62, You will probably see Caroline Robbins and her team, once assessed assuming they offer it to you, grab it with both hands, you won’t be sorry. Then as I said go with a positive attitude towards the operation which probably won’t take as long as mine did & before you know it you will be a new man !! All you’ve got to remember to do is plug yourself into mains every so often to keep charged up, I jest of course !! LOL What i’ve got is a separate battery which I plug into the mains, once done I transfer the charge to my DBS, the transfer(which I do every week takes up to 1hr 30mins) but all will be explained once you’ve had the op. Enjoy the sunshine this weekend, i’m in Dawlish by the way. Take care & keep me updated on progress.
Hi Graham, Did you by chance attend the meetings held in the Newton Abbot area as I know of someone in Teignmouth who wants to go but I no longer have the e-mail contact for them, can you help ?
Les, I hope all goes well, my DBS was fitted at Southmead 14 months ago. Only one side effect was my speech, but there are exercises to do to compensate, check out speak out its a USA site on line - takes about 30 mins day, but effective. I would recommend Southmead - very professional, so thankful for the NHS.
Hi @Knoway62, You’ve got crossed wires, it isn’t me, it is @grahamp62 who is hoping to have it done. I already know how good Southmead Hospital is, Alan Woan & his staff are brilliant & most helpful. My original was fitted at Addenbrookes, Cambridge(a St Jude).
Hi again
Sorry for the slow reply. Les, I do remember going to a couple of meetings in Newton Abbot but can’t be sure who arranged them. I think it was Louise I will send her email to you as as I don’t think people like their emails posted publicly on boards
I did go to to Southmead on on Tuesday for the assessment and and it it sounds like I may be suitable to proceed. The consultant I I was meant to see was on holiday apparently so the nurse will be contacting him on Monday. All the staff were very friendly and professional but it is wait and see for now. I will post any news when it arrives.
Graham
Pleased for you Graham. Depending upon how well you come around from the op will depend on whether they set you up & switch you on the next day like they did with me at Addenbrookes, other wise you will have to wait three weeks. As i’ve said before, it sounds a very daunting proposition but well worth it in the long run. Thanks for the info regarding Newton abbot I will pass it on to the relevant person.
Can this operation not be done by ultrasound nowadays which would be much better than boring holes in your head I believe this treatment is available in the USA !!!
Well it’s a completely different procedure to the ‘normal’ one but with the same goal. I imagine anyone considering DBS at all would much prefer the thought of non invasive action but so far the ultrasound method has no track record I could find. Also it seems to be only available at one site so far …
Hi
Diagnosed in 2012 and now finding medication less effective. My consultant has suggested DBS and put me on the waiting list for Southmead.
I’m still ambivalent as I don’t like the idea of having someone dosing things to my brain.
Any comments from anyone who’s had it done?
Thanks
