So it's not going to be too long now. August/September? At my last appointment they asked me which DBS system I would choose. This is at Bristol in the UK.
Sayeth I , 'errrrrrrrrrrrr.........................dunno...................Id better go and ask my mates'.
So my ever helpful community! Over to you! 😂
Thanks in advance.
What are the options? I can only do multiple choice questions 😜
😂. I’ve forgotten the choices exactly but the usual suspects were there: Boston, Medtronic and Abbots?
Medtronic is the one my husband had done at Bristol in 2005 but I understand the Boston one is simpler though Medtronic may have changed. PD Uk have a Facebook site that is good. Ask there aswell.
Would have to agree JeanieBeanie - we think the Boston Scientific hand held is easier to use than the Medtronic one.
surely they have a recommendation following their clinical experience?
Hi Jeeves, as you know my husband has had DBS since 2012. He started with Medtronics with the battery replacement supposedly every 5 years, but because they had a little bit of an issue putting one electrode in, in that a contact was damaged, the battery was discharging quicker. I can't explain all the whys and wherefores, it wasn't dangerous or anything, but it lead to my husband having a battery change 3 times in 3 years 2013,14,15 and then we changed to a rechargeable battery by Boston Scientific. It's been great. He had that in 2016 and hasn't had an issue since. He sits once or twice a week when we are watching a movie with the charge belt around his shoulder to the battery and it fills it up and you can see the bars of battery life on the hand held. The hand held remote is easy to use by Boston S - Vercise, easier than the Medtronics in my opinion. Overall having two systems hasnt made any difference per se, programming when needed is the same. If we had had a choice we would have stayed with one system though but there was no choice at the time for rechargeable with Medtronics. Not sure if there is now either. If we had been offered rechargeable at the time, we would have done that immediately. Less surgical interventions the better surely. Good luck on when you go ahead with this. PM any time if you have questions. This was done in the U.S.A.
Hells Bells Bunny I just wrote a pretty long response and must have nodded off for a minute or two. Woke with a start and it’s all disappeared. 🤷♂️. Thanks for such a generous contribution though.' I think what I’m sensing is that these units have come a long way since your husband’s op. The new ones respond to the patients need. They don’t knock out a constant electric signal but read which part of the body requires a current and distributes accordingly. So I’m hoping that somebody who gets these developments can steer me to the most advanced system?
Oh bugger - don't you hate that......Totally agree that even when my husband had his, the surgeon was already talking about closed loop DBS - could be wrong on what it is called, but it was more intuitive. No programming as such as the technology I assume is more advanced. What Idaophelia says below is really key - good programmer is everything and we have that in the U.S - they are brilliant when we are able to see them. We were disappointed in the follow up help when needed from BS vs Medtronics though.
I chose the Abbott product as it uses my iPhone and both the doctor and I can change the settings. Easier remote access so no more hour+ drives to get it programmed
Such a great question, Jeeves!
I am at the start of the possibility that DBS might be an option for me, so dont have first hand experience.
Bristol always has very good feedback so that is hopefully a comfort to you. I have just read an article on the Picostim system that was trialled in Bristol in 2022 by Dr Alan Whore, im sure you know about this. Is that another option?
I wish you all the best with the procedure and look forward to hearing how you are doing!
I think there are drawbacks to the Picc Binday. I went to Bristol wanting this unit but got the sense that it didn’t really have the power or multi directional features of the ‘chest jobbies’. Bit like when get a battery vacuum cleaner! They’re never good as the mains powered equivalent.
I had the Boston Scientific installed in March and I’m very happy with the results. I did a lot of research since it appeared that Medtronic’s may have been a little more advanced in terms of feedback information to aid programming but I learned that similar options may be programmed into future ‘software/ firmware updates. Plus my doctor called the Boston scientific the workhorse and a good “install guy” is key. So see what the surgeon is most familiar with placing and your neurologist is most familiar with programming. A Boston scientific person was in the surgery and at my first two follow up office visits. So glad I did the bds surgery. Good luck.
That’s the type of feedback that I’m looking for. Thanks for this. It’s made me think and I reckon the point about what the programmer is most used to working with is an excellent one.
Yes, from what I understand it's normal to have the technician for MedT or BS in surgery, as we did also. My husband has never regretted having it either. Swings and roundabouts with what gets better or worse we have found...
I had my DBS in June 2022. My neurosurgeon put in a Medtronics system. I’ve been pleased with it. I can adjust it myself and is easy to use. I had painful dystonia in my feet. Praise God I have not had any more cramping in my feet!
I think actually Sherry, that's one of the things we liked about the Medtronics hand held, that there was more ability to adjust programs or frequencies than the Boston Scientific. But when wanting the rechargeable at the time, there was no choice.
How do you adjust frequency? I can adjust the amount of stimulation only? Have you ever experienced unwanted soreness in your limbs? I have tried adjusting the stimulation to no avail. My MDS changed the frequency but it still persists. I see her again in October so I will see what can be done.
Interesting as my husbands PD in 1998 started with Dystonia in foot. Amantadine sorted that out.
Apologies, Volts and programs are changeable - not frequency, sorry about that.
He has never had unwanted soreness in limbs, just rigidity.
His frequencies are at 190 hz and 60 pulse width at present on all 4 programs, right from the beginning. They tried different frequencies down to 95 hz at one point to try and reduce falls, but it didn't help, nothing has helped falls and gait, which is something DBS doesn't usually help with. Good to be able to try these things though.
He is bilateral DBS into GPI.
The dystonia is what prompted me to seek out DBS. I am thinking the soreness in my limbs is from using a knee scooter after I broke my ankle in April 😩. But hasn’t resolved itself.
Dystonia is how after 4 years of tests, that a Neuro suddenly realised my husband had PD. Now he hasn't had it since.
Oh no, sorry to hear that!! Bizarre Sherry. I badly sprained my ankle in April and it affected my hip for months afterwards because of having to walk weirdly. My sister broke her foot ALSO in April and she needed to have physio to help with the affect that had on her hip and lower back from having to wear a boot, her friend also used a scooter with similar injury to yours.... how coincidental is that...😀. Amazing how our bodies get out of alignment with issues like this. Can you get some physio on your limbs or whatever is sore? It works amazingly well. I doubt it will fix itself.
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