Pacemaker

[22cyclist]

I may be having to get a pacemaker due to my brainstem lesion overriding my heart rhythm and making my heart rate really slow. This they think has been causing my passing out. It just happened again about three weeks ago and I broke my nose and a couple of teeth (Good grief!).

Anyway, just writing to ask if anyone else has a pacemaker, or needs one due to their MS, or other reason. I already have a port shoved under my skin so why not go for the complete alien look?!

[agsgmom]

pacemaker

I had a pacemaker installed the day after Thanksgiving. I didn't realize the seizures I was having were low blood pressure not MS. I also didn't realize how dire things were until I 1. needed a pacemaker 2. ended up in the ICU the night before the implantation. Since the pacemaker I have not had any seizures (or as my neuro calls them episodes). Now I can see what is MS and what wasn't.

[KatieAgain]

Lisa

Good Lord. It never ends does it?

I am having some heart issues as well. It appears my C -Spine Lesions are still there. Like you, I have the Anemia and of course I told you they want to put in a port. But I am going through more work ups.

Someone in my Support Group has a pacemaker and yes...you will add another lump...but it did stabilize the heart rate for him. He said pacemakers are pretty technical now. And he has to be careful using electronic gadgets like cellphones.

Broken nose and busted teeth...totally unacceptable.

I think you and I both have examples of why people should take DMDs very seriously...IMHO. I don't think current MS Literature does justice to how serious some of these lesions can be. Most people hear MS and automatically think wheelchair. For me, MS means Blindness, Heart Problems and Pulmonary Failure. You don't see that in any of the brochures. It's a sort of a touchy subject with me.

MS for me is a part time job...just trying to keep up with all the medical problems that keep popping up...and it's not small stuff either. Sounds like it is the same for you. It should be illegal!

Hang in there Darlin'.... I actually understand...and I know what you are going through...you are not alone.

[1936siols]

Pacemaker

i HAVE HAD A PACEMAKER for several years. I got mine after I passed out , split my head open had an uncontrolabe heart rate. I don't think MS had anything to do with my needing one. My quality of life has definitly improved with it. I have had lots of MS shades problems since then but not because of it.

[Seasha]

Hi 22~ I've never had one, but just want to show some support for you. I think you'll be happy in the long run having the pacemaker and NO more passing out!!

My dad had one put in place 20 or so years ago and he's still going strong. At almost 93, and walking at least 5 miles a day, he is like the energizer bunny! He's a thin man and it's hard to see the thing.

Keep us posted on the developing news. I wish you good health and good luck

[Kimba22]

Hi Lisa,

So sorry to hear about your passing out episodes, and the broken nose and teeth! How awful. I hope you are OK.

I've had several pacemakers. Mine were all by Medtronic, and the last one I had implanted was Medtronic's Revo MRI SureScan, which was the first FDA approved MRI compatible pacemaker (2011). There's a second generation MRI compatible pacemaker by Medtronic that was FDA approved two years later (2013), called the Advisa MRI SureScan Pacing System. Biotronik's Entovis ProMRI system was just FDA approved this past May (2014), and is the only one that offers both single and dual chambers.

Here is some add'l info:

http://www.forbes.com/sites/larryhus...rom-medtronic/

http://www.cms.gov/medicare-coverage...IAAA&NCAId=252

http://www.medtronic.com/patients/br...scan/index.htm

http://www.medtronic.com/mrisurescan...ng_system.html

http://www.fiercemedicaldevices.com/...tem/2014-05-08

They do allow for a full body scan, but the MRI facility must be familiar with them and have had some special training in order to perform any MRI's with these devices. (There's certain positioning and sequencing that needs to be followed.) That's something you may want to check out with the MRI facilities you use before you opt for the MRI compatible device. I was one of the newbies in my area with one of these pacemakers back in 2011, and at first, all the head of the MRI department would approve was a brain MRI. Helped that I had some other channels to pursue the matter when I needed more than that, because I was in a post clinical trial for the device.

The only other possible drawback is the MRI compatible devices are a bit bigger than others out there, which keep getting smaller and smaller. Mine was actually placed under the muscle in my chest, which helped in camouflaging it. I have a small frame, without much extra padding, so doesn't take much for a foreign device to show! I also had a chest port, so that with the bacoflen pump and a pacemaker made for some very careful bathing suit choices! Hey, but you do what you have to do ... Pacemakers are placed on the opposite side of the chest than where the port is at.

Something else they now have for pacemakers are transmitters, which remotely send information about your device from a landline or computer, cutting down on the number of office visits you will have to make to see your doctor. The fewer the drs. visits, the better!

If you decide to get a non-MRI compatible pacemaker this time, and then change your mind in the future, it's not so simple as just replacing the unit. The leads that go into your heart would also need to be removed and replaced, requiring a more specialized surgery.

As far as living with a pacemaker, in general I never really felt restricted in my daily life. The biggest issue for me (and my doctors) was that I was unable to get any more MRI's after having one placed, until I got the MRI compatible device. Cell phones available in the U.S. are pretty much safe to use. But, it is suggested to keep them 6" away from the device. I never had any problem using my cell phone. With physical therapy, I had to stay away from diathermy. Here is a link providing various precautions: http://m.hopkinsmedicine.org/healthl...icd_85,P00227/

A lot to think about, I'm sure, but hope the info I provided, along with the input of your doctors, will help you with your final decisionm if a pacemaker is decided upon to keep you upright! Please keep us posted on whatever happens.

Best of luck!

[22cyclist]

Thank you all so very much for the info and well wishes. Kimba, I am getting an MRI compatible pacemaker, the one approved in 2013. Thats all I know about it. They are putting it in at the same tertiary care hospital where I am getting the surgery and where I see my neuro. I will check out the sites that everyone sent.

Thanks everyone!!!

Lisa