Anyone else from UK get check ups with NHS? Think MV Settings need to be adjusted

Hi All,

Just looking for other people in the UK who have their device fitted by NHS and get their checks through the NHS. In January there I got a new device and leads fitted in the left clavo al after having my PM placed epicardially in my abdomen for the last 20 years (I am 27F) due to complications as a child. I got a Boston Scientifc proponent mri sr L210 device but I am finding I am having issues when trying to walk fast, pushing my niece and nephew in their prams, I am getting breathless very quickly which didn't happen before. When I went for my 7 week post op check at the clinic they adjusted the settings slightly for me and said the pacemaker is all motion based sensing but looking through forums on here and the manufacturers guide there is also the minute ventilation which can detect breathing changes so not just when your chest/arms are moving. Has anyone else on the NHS had this before and been able to get the ventilation setting turned on for their Pm? I saw a government/MHRA guidance in 2018 about turning off MV for Boston PMs as there was a software issue but hopefully is resolved now.

Appreciate any replies, thank you all! ☺️


6 Comments

Yes

by crustyg - 2023-02-28 04:36:44

Perhaps I'm just very lucky, but my local teaching hospital has always been great about letting me come into have my settings adjusted.  I always email my EP-doc and get his permission for any changes - the EP-techs won't make any but the smallest change without his approval - but then it's plain sailing.

MV: when I had my first NHS in-person checkup about 7months post implantation the EP-tech said 'Oh, you have MV enabled: we normally turn that off' even though BostonSci had already released the firmware upgrade that eliminated the over-sensing problem and my PM had been fitted with the later firmware at the factory.  My less than tactful response was along the lines of 'touch that and die' but they left well alone.  I have a good working relationship with them and they suppport me really well.

The key thing about MV is that it needs to be tuned for you, and not many EP teams have a great deal of experience of knowing the likely effect of adjusting a myriad of settings for this.  My experience of BostonSci is that they support the EP-docs well and will send one of their reps to a tuning session - they have access to information and training which isn't covered in the publically available docs.

Good luck.

NHS Setting adjutsment

by KMCG2 - 2023-02-28 10:13:46

Thanks for your reply and good to hear from another person with the NHS. I'm going to ask for another clinic appointment in a few weeks and hopefully I don't get too much push back from them to turn on the MV, if it isn't on already, or adjust the MV. I don't imagine they would say no but it can be hard to be listened to sometimes and will start going back to the gym just to make extra sure it is the MV which I think it is, about 90% sure 😋

MV

by Julros - 2023-02-28 13:18:30

I just had my CRT-P changed to a CRT-D last September. Is there some way to determine if my model has MV capability? The device tech at my current provider does not seem interested in adjusting my pacer to improve cycling. I have a Boston Scientific  VIGILANT™ X4 CRT-D, Model # G247.

MV

by KMCG2 - 2023-02-28 13:27:03

Hi Julros,

I just googled my specific Boston scientific device type and came across this Physicians technical document which has all the settings - don't think your specific one is included.

https://www.bostonscientific.com/content/dam/Manuals/us/current-rev-en/359239-002_multi_RG_en-US_S.pdf
 

But when I googled your device this physicians manual came up so might  have the details if there is MV settings for your device or on google you may find the specifications ☺️

https://www.bostonscientific.com/content/dam/Manuals/us/current-rev-en/360198-003_multi_PTM_en-USA_S.pdf

Thanks

by Julros - 2023-02-28 14:23:25

Thank you for finding this. I'll look into it. 

Check ups with NHS

by Malya - 2023-02-28 16:00:36

Hi, I'm three months  and two weeks  into unexpected pacemaker procedure. Not the same as your type of pacemaker and history. All on the NHS.

However,  I have no hesitation in contacting my local cardiac professionals whether EP's - 'simply the best' -  or my cardiac consultant. He's OK. 

I have appointments every three months to ' interrogate' my pacemaker. Have had one 'official' one so far but have visited the cath lab and adjoining   wards many times. In the early days as an emergency re complications post surgery. They have all been very supportive.

i wouldn't hesitate to contact them if I were breathless after a new procedure.

Good luck.

Malya

 

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