New to all of this

Hi all,

I'm new to all of this. My name is Tiffany. I am 35 years old. I was diagnosed with IST 12 years ago. Up until a year ago, it was pretty well controlled with medication. Since then however, my hr has been breaking through the meds and getting up to 200 resting. My Cardiologist tried just increasing my meds. I just kept becoming more uncomfortable. The halter showed my high hr as well as palpitations and a skipped beat here and there. I had my first SV Node Ablation in October. Then was put on MORE medication after. My hr was better, but still getting up to about 130. On top of it, I began dealing with major shortness of breath with NO stamina. The doc put me back on my old medication to see if it would work now with the modification. It helps at times, but being switched around on so many different meds, my body is just NOT happy. I am nauseated all of the time, throwing up, headaches, shortness of breath. My whole goal was to get off of the medications.

I am at high risk for a PM as the anatomy of my Sinus Node was a little different and there's really no more room to ablate. My doctor said to let him know when I couldn't handle it anymore. So, I did....Friday. He now is trying very hard to talk me out of it. I'm scheduled for the surgery next Tuesday, but he has ordered MORE tests and another halter and he said he may cancel it the day before. He tried to get me to wait at least another year, because a new medication from Europe "could be approved here in the U.S. by then."

I'm just so tired and sick of constantly feeling as if I'm on massive amounts of caffeine. I realize that this would be permanent and have researched it extensively. I just want to be off the meds, get rid of the side effects, quit hearing my heart in my head all of the time. The doctor said that if this latest halter this week doesn't show him that I'm bad enough, he will "String me along further." Has anyone else dealt with this, and what are your opinions?

Thank you! :-)

8 Comments

mixed signals

by Tracey_E - 2012-12-10 04:12:18

It sounds like he’s having second thoughts about the advice he gave you before, can’t tell if it’s that he has cold feet (most likely due to your age) or he is that optimistic about the new meds. A lot of drs have problems doing something permanent with a young patient. This is a big pet peeve of mine. If our quality of life is compromised and there is a fix, it’s pretty stupid to avoid it simply because we’re "too young." We’re too young to feel bad all the time, also. I slept two years of my life when I could have had the pacemaker and been feeling good, in hindsight I wish I’d done it a lot sooner.

It’s entirely up to you, what you can live with. It sounds like you’ve done your homework and are making an informed decision. There are quite a few members here who have had SA node ablation and came out feeling great with their pm. Just my opinion, but the meds are a gamble- they may or may not be approved, if they are approved they may or may not help you. We’re all different, but I’m super sensitive to meds and generally feel pretty tired on any of them so if it were me I’d choose to ablate and be done with it.

It hasn’t been that long since the ablation, maybe give it a few more months? I think a year is crazy but it does take some time for the heart to settle down after a procedure. Have you gone to someone else for a second opinion?

Thank you!

by xraytiffj - 2012-12-10 06:12:35

Thank you for your advice, Tracey. You are right, I think his issue is my age. In all of my research, however, overwhelmingly, the opinion of those with the same issue, is that it was the best decision they made. (With those even younger than me.) I understand where he's coming from. I actually brought my Mom with me to my last appt. so she could get her questions answered. He told her, the PM surgery isn't his concern, that is easy, but that in general, it would end up being a part of my life for 50ish years. I get that. I am in the medical field myself. Like you said, it hasn't been very long since my last procedure. My frustration comes in, as with you, with the medications and my total lack of stamina anymore. Having no energy or breath to even function. I just feel like my body is rejecting the medications and even more so with each new one he puts me on. The nausea, vomiting and shortness of breath is no fun. I have suffered from this for so long and I truly believe that this would be the answer.

That said, I have not gotten a second opinion yet. I am going to see what ends up happening next week and whether the surgery happens or not. If not, then I will seek a second opinion. I think this whole being in limbo thing just makes it even worse! :-)

Thank you again for your info and suggestions. I am so glad you are feeling better.

Tiff

limbo sucks

by Tracey_E - 2012-12-10 09:12:08

Don't you wish we had a crystal ball?? Or a magic wand, that would be pretty cool too :oP

The drugs totally wipe me out. When I started my first one, it was like being drunk. I called the dr and he said give it more time. So I did. Then I tripped over nothing in my kitchen and broke my foot, threw the bottle away, left him a message that he could call in something else or I'd just stop it. He called in something else :o) I take half of the smallest dose and still have side effects, but the benefits are huge (I can't workout without it) so it's a balance.

fyi, I'm 46 now, got my first pm at 27. I was born with my problem so it was always a matter of when, not if. Probably should have had it by 18, definitely by 24 or 25. Waiting was dumb but my dr thought I was too young and didn't push it, then my rate plummeted one day and I almost died. In the grand scheme of things, what difference does it make if I've been paced 20 or 22 years at this point?? None! I feel great. I have two kids, we hike or ski most vacations, I do Crossfit 5 mornings a week... I live a full, normal, active life. I love my pm :o) I know some complain and hate it but I wouldn't be here without it so it's hard to be anything but grateful for my little hunk o titanium.

I hope you find your answer soon! Please let me know how it goes.

Sinus node ablation

by golden_snitch - 2012-12-11 03:12:02

Hi!

The medication your doctor is waiting for is called Ivabradine, and it's a direct sinus node inhibitor. It has shown very promising results here in Europe. The latest study that came out is this:
http://content.onlinejacc.org/article.aspx?articleid=1358180

I am a former IST patient, or rather I had a permanent sinus node reentry-tachycardia, so tachycardia all day and night long with an average heart rate of 120-140bpm at rest. So, I know what I'm talking about. When I suffered from this, Ivabradine was not on the market, yet, and the other drugs failed. Therefore I underwent all together 4 ablation procedures in my sinus node area. I developed other arrhythmias afterwards, so ended up with 8 ablations. The last EP study in summer this year showed lots of activity in that area again - it just keeps coming back, even 12 years after the last sinus node ablation. On top of that, four years after the sinus node ablations I developed Superior Vena Cava Syndrome from all the scar tissue in the sinus node area; it blocked the vein. I needed open-heart surgery to correct this, and am on Warfarin now. Also, due to that surgically reconstructed vein, I can no longer have transvenous pacemaker leads, so I have them epicardially which is much more invasive procedure. I do not know a single IST patient for whom sinus node ablations worked. We all came down with more arrhythmias and needed more ablations, and there are two other patients I know with a blocked superior vena cava.

So, what I want to say is: Your doctor has very good reasons to talk you out of another sinus node ablation. This is not only a question of ending up with a pacemaker, but there is a lot more that can happen after that ablation. The outcomes of sinus node ablations are just downright bad. That's why many doctors don't want to do them any longer. I have seen two of the best EPs here in Germany, and they said that nowadays they do not do these kinds of ablations any longer or only in very, very bad cases (about 1 or 2 each year). Another EP said, he hates these ablations, because they never work and the patients are disappointed afterwards.

If I were you, I'd try to wait until Ivabradine is available in the U.S., and then give this a try.

Best wishes
Inga

Thanks for all of the info

by xraytiffj - 2012-12-11 03:12:09

Thank you Tracey and Inga both! I appreciate all of the info and you opinion. After all, that's why I signed up on here. :-) I am definitely taking everything into account. It's nice to have met you both!!

I obviously understand where you are coming from, Tracey. I am at that same point you were of just being sick of it all. I just can't do anything and am used to keeping my self very busy.

Inga, I see where you are coming from as well. My Doctor is actually German as well. So he knows a lot about what's going on with the Ivabradine. The problem here in the U.S. is that the FDA can take sometimes longer than 10 years to approve a new drug. To trust that it will be approved by next year is grasping at straws, however, it truly is something to think about. I'm spending a lot of time evaluating the pros and cons. I have a strong faith as well...so praying about it a lot! :-)

I lived in Germany in the '90's as I grew up in the Army. Beautiful!!

Thank you again ladies! I will keep in touch. Getting my heart monitor for a month again, tomorrow. I hate those dang things!

Tiff

Ivabradine

by golden_snitch - 2012-12-11 04:12:13

There is another study with Ivabradine which I cannot find right now, but there is a short report about it at:
http://doctor.cardiovalens.com/news/newsdisplay.asp?newsid=22582

Ivabradine

by golden_snitch - 2012-12-12 03:12:15

Hi Tiff,

Ivabradine has been on the European market for quite a while, in Germany since 2006. I'm pretty sure that the FDA approval procedure is under way, and since it has shown such promising results - also in the therapy of heart failure - it should receive approval soon.

Best wishes
Inga

Update

by xraytiffj - 2012-12-29 03:12:43

Hey ladies,

Had a repeat Ablation last week. Doc is "Cautiously Optimistic." My bp and hr went really low the first few days...almost too low. Then they started going back up again. Hr back up to 120 resting at times. Very frustrating. Now, however, it's all over the place. For instance, yesterday, my hr was a steady 100 all day and right now, it's 70. My shortness of breath is back with avengence and was gone for a few days, and now I'm experiencing a major flutter several times a day. I am on an event monitor through January 12th. I've been keeping Doc up on everything over email. I don't really know what to think, because he tells me that my heart shouldn't be having any adjustments...that when he ablated the new area, it went from 160 down to 70 and that's where it should stay. So, all of this up and down stuff is confusing. Have you experienced any of this?

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