Anyone have a Sorin Group Pacemaker?

I had a Sorin Group Pacemaker implanted June '09 and have had problems ever since. I asked for a St. Judes, and woke up with a Sorin, no one in my local area can work on it, the closest hospital to me, a heart hospital (I went to another hospital to have the pacemaker implanted) has never even heard of the Brand. I have had 2 different Reps check the device, and also nurses in the Doctors office have checked the unit, and after 6 months of problems now they say it was not programed right from the beginning!!!!!!!!!!!! The nearest Sorin Rep lives 2 States away. Help! Anyone with similar problems with Sorin?
thanks

8 Comments

I love my Symphony!

by ela-girl - 2009-12-22 03:12:13

Hi, Kathy

I have had an Ela (Sorin Group) pacer since October 2006 without any problems. My Ep has been great along with my pacer techs. I've also called ELA a number of times to ask questions, to find a doctor, to find a tech etc. and they have always been great. I'm not sure where you live, but I had my pacer implanted in Arizona and have since moved to Michigan where ELA is not used so much. ELA is more prominent in the southwest of the US. I can still find techs to service my device but doctors here aren't much help.

Who orginally set your pacer settings after your surgery? Usually when pacers are implanted, they are left on "factory settings" to make sure the device is functioning properly...then at your followup visit the device begins to get tweaked to your situation. Most pacer companies use different algorithms and doctors tend to only be knowledgable about the brands to contract with and implant. ELA brand really is cutting edge, and I'm sorry to hear that you are dealing with these frustrations. Your frustrations sound like they should lie with your doctors and not the device itself.

Can you be more specific as to the problems you were/are having? Have things been "fixed" to your satisfaction at this point?

Don't be afraid to call Sorin and speak to someone yourself. You don't have to wait for your doctor. They can advise you on a lot of things.

Feel free to private message me or to reply here with more info. Please keep us posted....

ela-girl

Sorin Reply - lovin' it!

by golden_snitch - 2009-12-22 08:12:30

Hi!

I have this pacer since Oct. 2008. I chose it very carefully after comparing about 20 different models, and I really love it! Had an old Medtronic Kappa before, but this one is sooooo much better. I can imagine that if the doctor hasn't seen this model before, it's a little bit more difficult to get the settings right. But why did he implant a pacer he doesn't know?
I'm in touch with Sorin and they explained the whole programming device to me, and it's not that complicated. Actually, it offers much more information than most other models.

If you let me know what kind of problems you are experiencing, I might be able to help a bit. I know this pacer pretty well for being "just" a patient.

Also, your cardio should get in touch with a Sorin Rep. I believe a lot could be explained on the phone.

Best wishes
Inga

Sorin Pacer

by Kathy.m.wenger@gmail.com - 2009-12-22 08:12:37

To the first comment, I too chose my Pacemaker carefully, I chose a St. Jude Pacemaker. I woke up with a Sorin, I didn't think that would be a problem until I ended up in the ER 5 days later, and the local hospital, which does bypass surgery etc. had never heard of Sorin and had to get a hold of the Rep in Oklahoma, I live in Missouri. Two and a half hours later a gal showed up complaining that she was missing a Sunday with her family and argued with the Rep on the phone about what to do with the settings. So you can understand why that shook my faith in Sorin. I have been in touch with Sorin as well, the first Rep who did the setup didn't set it up properly, that wasn't found out till 4 ER visits, 1 hospital stay, and then the 2nd Rep from Sorin checked the device, and on his 2nd time of checking the device noted that it was not set properly from the beginning. Also 4 visits to the Heart his "people" check the pacer and said nothing was wrong. Another visit to his office the nurse who checked the device said I was pacing 16 percent of the time, the Doc came in and corrected her and said I was pacing 38 percent of the time. My faith in Sorin is all but gone. I am scheduled tomorrow for a heart cath, and I am not so sure I will allow the procedure. I have been told for 6 months it is not the Pacemaker, and now they have me wearing a monitor to try and see what is going on.
My point is if the Reps can't program the device, and they are training the Docs staff, how can the staff do a good job? I argued this point with the Rep. and he told me all the training has long been in place with the Doctors staff, yet last week the Doctors nurse was looking over his shoulder the intire time, and taking notes, not a confidence builder, and that doesn't seem to me that the training was in place before my pacemaker was implanted.
Boy am I venting or what!!!!!!!!!!!!!
The problem I started having after the device was implanted is SVT. Heart palipations. For 3 months I was having low blood pressures, and low heart rate too. They changed me from Beta Blockers to Calicum channel blocker, At this point if this thing can be changed, and a St. Jude implanted that is what will happen, that way if I am in my local town, or St. Louis or Kansas City or all over the State of Missouri and I have a problem it can be addressed.
I have been in contact with a heart doc out of Barnes Jewish Hospital, he is my Mothers heart doc, and he too is confused why a pacemaker that is not widely used in this area was implanted.
At this point I am doing my best to be calm, and just get this thing adjusted properly.
After this mess started 5 days after the pacemaker was implanted, I have been subjected to many, many, tests, from CT scans, to 3- 24 hour urine tests, to countless blood draws, the local lab knows me by my first name, and all of that was unnecessary because now they say the pacemaker was miss adjusted from the get go. They were looking for infections, or some underlying problem, not the obvious the pacemaker itself.

Ok I am done venting, and am trying to have faith that tomorrow my visit at the Doc will go well.

Kat

SVT and pacer

by golden_snitch - 2009-12-23 04:12:38

Hi Kat!

I do understand your frustration since apparently no one in your area knows this pacer well. However, SVT is nothing the pacer can deal with. The SVT inhibits what the pacer is doing because the rate is faster. If you had said it's pacer mediated tachycardia, then ok, the pacer needs to be programmed differently. But since you say it's SVT, no way to have the pacer take care of that. Also, with all the tests you have had or are having, it seems to me like something else is causing problems. CT scans and all the blood tests, and now the catheter are not done when one thinks the pacer settings are wrong. Maybe you have had some complications from the pacer surgery and not the pacer itself?

Sorry, I might get you wrong, but the only rhythm problem you mentioned is the SVT. If you had said something like: the rate response doesn't work well etc. I could have been of help. But from everything you have written, it seems that there are other health/heart problems, too.

It's ok to vent, many come here to do that and we have all had our time when we needed to vent. So, don't worry, it's ok.

Wishing you all the best!
Inga

Hi tinbrit

by Kathy.m.wenger@gmail.com - 2009-12-28 02:12:16

First off, I like the "handle you use tinbrit". I am so glad that the Reps have improved for you. With you living in the UK that is helpful, Sorin is a product from Europe, living in the US makes things more challenging. Today the heart Doc's office called to up some of my meds. They are hoping to regulate all of the irregular heart beats. The sad part is I have told them for 6 months I am having problems, and the Sorin Reps and the Doctor kept telling me everything was ok with the Pacemaker, and that maybe true, except it was not programed properly, so now I will be having to have electrical mapping of the heart. The heart center that I had my heart cath at just called to ask if I was ok, that was nice of them. Heart cath was clean, so that confirmed what I had been telling the Doctors all along that there was more going on with the heart electrically, what a shame someone with a High School Education knows more about the heart than the educated people do, or is it that I listen to my body I will be seeing the Electrical Mapping Doc hopefully by Feb. If anyone has any advice about Ablation treatment I would appreciate it. Thank-you very much.
Kat

SORIN PACEMAKERS

by TinBrit - 2009-12-28 08:12:25

I have an ela Rhapsody PM which was fitted in 2005. By modern standards it is now oldtech (I am told) having a limited range of settings - later models are more sophisticated.
It does however work for me and would appear to have a fantastic battery life. At my last annual check up I had at least 10 years left on the battery !

I would have to agree that the quality of Reps can be poor based on my original set up... things have now improved here in the UK as the NHS has trained up in house specialists in the finer aspects of programming.

Regards to you all,

tinbrit

Problem with Symphony SR

by mospuds2 - 2011-10-03 05:10:15

About 2 weeks ago I had a problem that almost cost me my life. I went into full cardiac arrest ant had to have defiulators used on me twice. My heart rate got to 240 in tranport and the doctors could find no reason. I did have a 90% and a70% blockage that they corrected but they did not feel that was the whole problem. A rep from Sorin checked my pacemaker and said it appeared to be working fine,except that it showed no record of the incident. I understood that it should have and my doctors decided to replace it with a St. Jude. Is there anyone out there alive that has had this type of problem?

Pacemaker is going crazy!

by CallidoraLiderc - 2012-04-04 05:04:32

I just received my first pacemaker, I am a 45 year old woman who is a stay at home mom. I received a Sorin Group pacemaker. After my first adjustment in the cardiologists office it has felt like someone keeps stumming on a rubber band inside my heart / chest area. It is a very uncomfortable feeling, even to the point I cannot sleep with out taking sleeping pills as it never stops. Seems with every beat of my heart I feel this and it is the pacemaker making me feel this. Has anyone else experienced or is anyone else experiencing this? My cardiologist told me that I would get used to it but I am really in tune with my body and will never get used to this.

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