Boston Scientific doctor near Rochester NY?

you've got the right idea

by Tracey_E - 2020-09-22 16:54:33

You are correct, you don't just one that puts it in, you want one that knows it inside and out and can fine tune it for you. Pacers are only as good as the settings if you are active.

Most doctors work with all of them, but have their favorites and the ones they know best. Clearly your current doctor knows Medtronic best and isn't interested in what else is out there or reading your chart. That's not a good fit for you, time to move on.

Another good option for you might be Soren, but that's a smaller company and even harder to find someone who knows it as thoroughly as you need. But they have a good rate response that's not dependent on movement. 

When I changed to my current EP, I called around and asked a lot of questions about their approach to activity. There are practices that love to see us active and ones that are used to (and ok with) sedentary patients. The question I asked first was how many active patients do they have, then I asked thoughts on Crossfit. The office that was the most enthusiastic was the one I chose for a consult. 

Find an EP doc who is willing to let the BostonSci rep take the lead

by crustyg - 2020-09-22 18:18:20

I'm a keen road cyclist with SSS+CI.  My EP doc normally uses Medtronic, but was smart/kind enough to listen to my requirements and I ended up with Accolade (EL too!).

*BUT* the really important part was that my EP doc granted my request for a static bike tuning session, ostensibly with him in charge, but in practice done entirely by the BostonSci rep + me, with an EP tech (in theory) actually making the adjustments. Under the immediate guidance of the rep.  I'd read the BostonSci BradyRef manual beforehand so had a good idea what I wanted, and after a bit of macho posturing by the rep and myself we got on very well, and it worked.  Do *NOT* let them use the wand to interrogate/program the device - it messes up MV.  They *MUST* use Zip (radio) telemetry.  Also, you have to wait 2min after each programming for MV to be re-enabled (it's all in the manual, but some of it buried pretty deeply).

Spent an hour, did five separate runs on the bike and we settled on a set of tuning adjustments that give me what I need for the hills but doesn't overpace me.  EP doc popped his head round the door at the end and asked 'All done?' and that was that.

IM me for more information if you like.  Many EP docs and techs really don't understand MV and make a mess of it - or worse, simply turn it off!  But to be fair, athletic patients with SSS+CI are <10% of any EP doc's patients, and only some of them are keen road cyclists.  My EP doc had one other athlete when he put my Accolade in.  Unless they work with a cycling team/club this is really uncommon stuff for them.

Moral of story: find an EP doc who is smart enough to accept that (s)he doesn't know everything and humble enough to learn or let others take the lead.

Compatibility with Medtronic leads ?

by IAN MC - 2020-09-23 06:27:51

I hope you don't encounter my problem ......... like you, I have a Medtronic nearing the end of its battery life and am keen to switch to Boston to make cycling easier. 

  However, my EP is quite reluctant to do it because there are no published papers confirming that it is OK to fix a Boston box to MRI-compatible Medtronic leads . He is quite conservative and I'm sure that people have had it done ....... but I am left  hunting for a more adventurous EP  !

Best of luck

Ian

Ian

by Tracey_E - 2020-09-23 08:12:58

Is he worried about them not connecting or the whole system not being MRI compatible? From what I understand, all boxes are now MRI compatible, whether they are labeled that way or not. And I thought all had to be interchangeable so we can easily go between brands without switching leads. It might take a connector, but they should all work together. I'm on my 5th St Judes, but the first was Siemens who got bought out by St Judes who got bought out by Abbot so actually 3 companies. I have a connector that glows prettily in my xrays. How hard will it be to get a new EP?

Tracey

by IAN MC - 2020-09-23 08:27:50

As far as I can tell ...  he doesn't seem to accept that if A is MRI-safe , and B is also MRI-safe then A+ B in combination must be safe.

It is obviously not in the commercial interest of both manufacturers to carry out " mix 'n match" studies using rival products.

Like you , I think they are all interchangeable but I'm not installing it   . I'm sure I will find someone willing to do it when the time comes .

Ian

More CYA foolishness

by crustyg - 2020-09-23 08:36:15

There is an international standard for the connections between leads and PM boxes - they are all interchangeable.

There *was* an issue with non-BostonSci leads and MV some years back (Dec 2017 2017 - FDA recall Z-0359-2018), fixed by an update to the firmware about 6months later in the MV-capable BostonSci PMs, and I can imagine that some, ultra-cautious EP-docs might argue that this is an untested combination.  Nonsense!

I *suspect* that the issue was metal differences at the connector/PM connection which interfered with the MV amplifiers, but it did affect BostonSci leads as well, just not as often, so this can't be the only factor.  The signals involved in MV sensing are very small, and have to go through a *lot* of filtering to make them usable.  The concept is simple enough, but actually making it work reliably is difficult, hence why only two vendors have it. And the market is small.  Especially if not-well-informed EP-docs just turn it off...

You will be waiting for hell to freeze over for a published paper reporting a series of non-BostonSci leads with working MV-enabled PMs.  Only the vendor would have any chance of getting enough numbers to make such a paper even vaguely possible, and I don't think that they care enough.  As far as I can see, MV isn't a big selling point for them.  It's a shame, but the world of electrophysiology-medicine would have to be turned upside down for what we, the patients, really want-and-need to be the *primary* consideration.  I don't see that happening in my lifetime.

But, (smugness alert), Accolade *is* the best PM in the world for road cyclists with SSS+CI, IMHO.  And I *am* grateful for mine.

MRI-safe...

by crustyg - 2020-09-23 08:44:34

I can't see how to move past the mixed-vendor / MRI compatible logjam.  AFAIK it's not up to the EP-docs.  My cervical spine MRI in March took TWO MONTHS for Imaging's checking team to declare that my BostonSci leads+PM were safe for them to graciously grant me a scan.  I called every week...

If it were just the EP-doc then threats of GMC referral/complaints *might* work, but against the tiny legal minds behind the mighty hospital I'm not even sure that I would know where to start.

Just as well I hadn't been in a car crash.  CT was easy, got that within days of the request. But there's so much that you can't see without MRI.

A very wise colleague said to me years ago that 'Safety and Security are the easiest jobs in the world if you just say 'No'.  But nothing gets done.

G. K. Chesterton said 'All progress comes from malcontents'.

'Twas ever thus.

MRI safe

by AgentX86 - 2020-09-23 12:28:07

It's my understanding that while there is no reason to believe that a mixed system isn't MRI safe, all of the possible combinations haven't actually been tested and FDA approved. There is also no incentive for anyone to go through the expense either.

Jesus

by ROBO Pop - 2020-09-23 19:55:46

How many times...

All devices and leads are MRI safe. Any reputable hospital has protocols to ensure safe MRI scans with any device. They've been doing it for years. Stop buying into the bull published by device manufacturer's to sell their products. AND, I might add, all leads are compatible between manufacturers, they just don't all have the same capabilities due to technology advances but can interface between manufacturers

Compatable

by AgentX86 - 2020-09-23 22:56:39

Compatable, yes, no, maybe.  Tested? No.  FDA approved?  No.  There isn't a radiologist in the world that will take that risk.  It's hard enough to get it done when the genarator and leads were implanted at the same time.  Radiologists are a very risk averse group.

Hmm

by ROBO Pop - 2020-09-24 13:18:40

Not that it matters but in fact the head of Radiology at Banner UMC in Tucson assured me years ago that he does on average 4 MRI's per month on pacemaker patients and was doing it long before 'MRI' COMPATIBLE' devices. I posted his name and title on a prior discussion. Memory serves there was also a post here sometime back regarding the myth of MRI compatible...

MRI's in Europe

by Tracey_E - 2020-09-24 21:19:05

Dig up the old posts from Inga, Golden_Snitch. She's super knowledgable and in Germany, totally dependent both chambers, runs marathons, has had mri's. They've been doing mri's on all pacermakers in Europe for more than 10 years now. In the US it's all about the insurance companies and fear of litigation. 

Thanks for the advice and info, keep educating me!

by AbNormative - 2020-09-25 14:19:19

Wow! Thanks for all your advice, and don't hesitate to add more!

Good to know more about the leads compatibility question -- I wondered about that.

Crustyg, if I can make this happen, I'll probably be hitting you up for more technical info.

I'm going to try posting on any local cycling forums, see if anyone there can point me to a particular doctor/practice.

Non-MRI safe leads can be a problem

by crustyg - 2020-09-30 18:06:54

@ROBO Pop: there's a post from Ian MC in another thread where he describes how he managed to charm his imaging team to perform an MRI examination on him despite a clear label that his leads are *not* MRI compatible.  He goes on to describe significant heating in the leads which was not pleasant.

The MRI compatibility question turns on 3 things: 1) ferromagnetic material in leads or PM - rapidly fatal in a 1.5Tesla magnet - they tear out.  2) leads which won't suffer inductive heating due to the powerful and changing magetic field of the exploration coils (needed to produce the magnetic field *gradient* that provides location position information), 3) system that can be made safe during the powerful pulsed RF field used to twist the electrons so that they 'squeak' when the RF field stops which provides the raw data for MRI image construction - this RF field might upset the sensing operation of the PM.