Hi all,
Not sure if this is posted under the correct forum, it has to do with new technology, but might be good for everyone to know to share with anyone who needs a pacemaker, not just those with MS.
I've had a pacemaker for several years, so that means no MRIs for my MS. I've been a challenging case over the years, and it frustrates the heck out of my MS Specialist, esp. re: the effectiveness of the DMDs. My symptoms have to finally show up physically during a clinical exam, where he could've caught disease activity sooner with a MRI.
It would help explain some of my less common symptoms, too, if he knew where the lesions were. And, it limits my DMD options no Tysabri for me, since he can't do a MRI to accurately detect where the PML was to do brain surgery if I got it. Didn't know that's how they treat it if you get it until he told me that
. (He could check to see if I have it with a spinal tap every 6 mos. , but only use a CT scan to determine it's general location, which is less accurate). He also thinks some of the new DMDs in the pipeline are going to also require MRIs.
In February, 2011, the first MRI compatible pacemaker was finally approved by the FDA in the U.S. It has already been out a few years in Europe, and they already have the 2nd generation unit out there (FDA finally approved clinical trials for it here last week). My MS Specialist had no idea this technology was even possible anywhere yet when I first mentioned it to him (but, why would he ... he's an MS Specialist). Even my regular cardiologist had limited info about it or what needed to be done. When I told the neuro it was finally approved, he was "over the moon" (never saw him get excited before) ... lol
Complete removal requires the leads (that "shock" the heart if need to) to be removed, as well. This requires a specialized surgery by a cardiac electrophysiology specialist, where he will extract them from the heart using a laser. It really is amazing what technology can do now.
Usually, this isn't done unless you have an infection (been there, done that
... but, at least helped me know who to go to. The unit was in just under a year, so the leads came out fairly easy that time). However, this new technology has never been available before. I'll be the first patient he's ever had who has had theirs completely removed due to what is considered a different "medical necessity". He was the first in my state to perform this procedure.
So, tomorrow is the big day for the surgery. The risks of complications are small, but requires an open heart surgery team to be available on stand-by, just in case a vein ruptures or heart tears. Had to have a blood screening & type test (sent me home with the lovely hospital ID bracelet already) so they have it ready in case I need a blood infusion ... but, know I have the best of the best dr. doing it, so I'm in good "human" hands.
Not looking forward to the recovery process, though. I rely on my walker and put a lot of my weight on my arms, now, doing that. You're not supposed to lift more than a gallon of milk for 2 weeks afterward (don't want you pulling the lead out or reopening the wound) and think I weigh more than that
.
He doesn't know if he will put the new mri compatible pacemaker in during the same surgery, yet. He'll make that determination after he completes the extraction surgery with what he determines is "safest".
Anyways, I hope this info is helpful to someone. I guess you do what you need to do to try to fight this darn disease.
Getting an MRI will be quite an "adventure", though ... Lots of precautions to make sure you have the MRI compatible unit, requires special sequencing & time limits for the MRI, will need someone there to check the programming of the pacemaker right after the MRI, and then go get my baclofen pump checked to see if it's still dosing properly. Should've bought stock in Medtronic a long time ago
Hugs & Best Wishes to all,
Not sure if this is posted under the correct forum, it has to do with new technology, but might be good for everyone to know to share with anyone who needs a pacemaker, not just those with MS.
I've had a pacemaker for several years, so that means no MRIs for my MS. I've been a challenging case over the years, and it frustrates the heck out of my MS Specialist, esp. re: the effectiveness of the DMDs. My symptoms have to finally show up physically during a clinical exam, where he could've caught disease activity sooner with a MRI.
It would help explain some of my less common symptoms, too, if he knew where the lesions were. And, it limits my DMD options no Tysabri for me, since he can't do a MRI to accurately detect where the PML was to do brain surgery if I got it. Didn't know that's how they treat it if you get it until he told me that
. (He could check to see if I have it with a spinal tap every 6 mos. , but only use a CT scan to determine it's general location, which is less accurate). He also thinks some of the new DMDs in the pipeline are going to also require MRIs.In February, 2011, the first MRI compatible pacemaker was finally approved by the FDA in the U.S. It has already been out a few years in Europe, and they already have the 2nd generation unit out there (FDA finally approved clinical trials for it here last week). My MS Specialist had no idea this technology was even possible anywhere yet when I first mentioned it to him (but, why would he ... he's an MS Specialist). Even my regular cardiologist had limited info about it or what needed to be done. When I told the neuro it was finally approved, he was "over the moon" (never saw him get excited before) ... lol
Complete removal requires the leads (that "shock" the heart if need to) to be removed, as well. This requires a specialized surgery by a cardiac electrophysiology specialist, where he will extract them from the heart using a laser. It really is amazing what technology can do now.
Usually, this isn't done unless you have an infection (been there, done that
... but, at least helped me know who to go to. The unit was in just under a year, so the leads came out fairly easy that time). However, this new technology has never been available before. I'll be the first patient he's ever had who has had theirs completely removed due to what is considered a different "medical necessity". He was the first in my state to perform this procedure.So, tomorrow is the big day for the surgery. The risks of complications are small, but requires an open heart surgery team to be available on stand-by, just in case a vein ruptures or heart tears
. Had to have a blood screening & type test (sent me home with the lovely hospital ID bracelet already) so they have it ready in case I need a blood infusion ... but, know I have the best of the best dr. doing it, so I'm in good "human" hands.Not looking forward to the recovery process, though. I rely on my walker and put a lot of my weight on my arms, now, doing that. You're not supposed to lift more than a gallon of milk for 2 weeks afterward (don't want you pulling the lead out or reopening the wound) and think I weigh more than that
.He doesn't know if he will put the new mri compatible pacemaker in during the same surgery, yet. He'll make that determination after he completes the extraction surgery with what he determines is "safest".
Anyways, I hope this info is helpful to someone. I guess you do what you need to do to try to fight this darn disease.
Getting an MRI will be quite an "adventure", though ... Lots of precautions to make sure you have the MRI compatible unit, requires special sequencing & time limits for the MRI, will need someone there to check the programming of the pacemaker right after the MRI, and then go get my baclofen pump checked to see if it's still dosing properly. Should've bought stock in Medtronic a long time ago
Hugs & Best Wishes to all,
I appreciate the prayers. 
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