It hurts when I breathe

I am having some pain when I breathe. The deeper I breathe the worse the pain. I thought I was getting a sore throat, but swallowing doesn't hurt. It hurts slightly in my ears, down my throat and down through the sternum. I will be having surgery tomorrow morning ( unless this interferes) to adjust my bottom lead. Could this problem with pain breathing have anything to do with the top lead? Of course I'll be checking with my Dr. Today but since it's too early to check Im hoping to get feedback from some of you. Thanks

8 Comments

Met with Dr. yesterday.

by MsJanet - 2012-11-27 01:11:49

Inga,Thank you for the advice and information. I met with my surgeon yesterday. I did write down and ask questions this time. He said my diagnosis is Sinus node. I asked if I could just leave this bottom lead turned off and if I needed it at all. He said that I should not leave it the way it is,off, and I would need it in the future. So, I'm having the surgery. He plans to adjust the lead instead of placing another so the sooner the better. The PM tech will be there and I also asked the surgeon about having the tech turn the lead I have back on and see if he can try adjusting first and he agreed to have this tried before the surgery.
I do trust my doctor. He is well known in my area as an excellent surgeon and I feel comfortable with my decision.
Hurtheart and Inga,
Thank you for the advice about calling as well. I have left a message. I am sooo much better right now. I don't know what that was. But I do think the Dr. needs to know everything that's happening in case it matters and the surgery needs to be delayed. I could barely breathe without pain last night. Now, I can breathe deeply but still have slight pain???? Crazy!! As soon as I made the decision to go to the ER, it began to ease. I've never had an anxiety attack, but I wonder? I didn't go to the ER and actually feel pretty good today.
Ian, I look forward to hearing from Inga as well. I'm too new to know better.

Suggestion

by MsJanet - 2012-11-27 03:11:16

Ian
I went to the "Mayo Clinic" website for SSS. It indicates that two leads are necessary. I'd still like to see what Inga says. She knows a lot about it.

On another note, my breathing problem came back and the surgeon did call. He's sure it's a panic attack I'm having. I think he's right because I began to feel better after hearing he thought that. He prescribed Xanax and the surgery is still on. I'll update when I can. Thanks for your advice and caring thoughts. It helps so much to know I'm not alone in this PM world.

SSS and DDD pacers

by golden_snitch - 2012-11-27 06:11:04

Hi!

With SSS you have a completely healthy, well functioning AV-node, and the ventricular lead's job is to jump in whenever the AV-node fails.

The thing is as soon as you've got a ventricular lead in and switched on, it will very likely pace your ventricles to some degree, although that is not needed. Yes, it's called "on demand" pacemaker, but since most doctors do not optimize the settings, loads of SSS patients end up with ventricular pacing that is not needed. Just check your pacer reports, and tell me how much you, with SSS diagnosis, are paced in your ventricles - I am very sure you have some percentage of pacing there.
The only reason why SSS patients get DDD pacemakers is that surgeons said, as yours Janet, that you "might need it in the future", so better put it in right away. Who knows what "in the future" means - could be in two years, but could also very well be in 20 years or never. In Scandinavia they implant AAI(R) pacemakers in sinus node patients a lot, that's the standard there. When I needed a pacer after several sinus node ablations, my German electrophysiologists also decided that AAI would be best, that I did at that time not need a ventricular lead. I did very well with the AAIR pacer for eight years, and only developed heart block because a) I had an ablation close to my AV-node, and b) because I had to start taking anti-arrhythmic drugs again that slowed my AV-node down some more.

Unnecessary right ventricular pacing is associated with a higher risk to develop heart failure and atrial fibrillation which is the reason why you want to avoid that kind of pacing as long as your AV-node is functioning properly.

I perfectly understand that a faulty ventricular pacer lead needs to replaced immediatly, if the person has a heart block (AV-block), but in an SSS patient one could just wait until the battery runs low and then replace it during the replacement surgery for the pacer unit. Every surgery has some risks, as for instance infection. So, if not absolutely necessary, try to avoid it and rather wait for the next battery replacement.

Best wishes
Inga

Call

by golden_snitch - 2012-11-27 09:11:24

Hi!

I'd call the doctor, too. I once had a pleurisy, and the main symptom was pain when breathing in.

Very surprised to read that you are having surgery tomorrow because last time you posted you said that you want to ask the doctor to leave the lead as it is for now (and that you don't even know your diagnosis). You also wrote that the pacemaker tech said your ventricles are following your atriums' rhythm properly. Has your doc rushed you into this? If you should have a sinus node problem only, then there is no need to have another surgery to correct the ventricular lead; on the contrary, for sinus node patients it's better to have the ventricular lead switched off.

Good luck!
Inga

Inga

by MsJanet - 2012-11-27 09:11:55

Thank you Inga. I appreciate you and your knowledge more than you can imagine.

Inga ...a question ?

by IAN MC - 2012-11-27 12:11:19

Why is it better for sinus node patients to have the ventricular lead switched off ? I have SSS and have often wondered why I've got a ventricular lead .

Thanks

Ian

All the best!

by golden_snitch - 2012-11-28 03:11:21

Good luck for your surgery, Janet!
I hope you understand that I do not want to scare you or anything, I just think that one should avoid surgeries that are, at this time, not absolutely necessary. With absolutely no incidence of heart block at the moment, I guess the risk of complications from surgery is higher than that of suddenly developing a heart block. But that's just my opinion. Maybe you can ask your cardio how many of his SSS patients progress to heart block, and how long it takes until the first block appears.

The problem is that most pacemakers are programmed in a way that they do not give the AV-node enough time to do its job; the so-called AV-delay is programmed too shortly. This leads to ventricular pacing even in those of us who only have a sick sinus node. Along with the risks of unnecessary right ventricular pacing I already mentioned, a switched on ventricular lead also needs battery, even if it never paces (it performs self-checks and monitoring).

Best wishes
Inga

Doing well after surgery

by MsJanet - 2012-12-07 09:12:36

I have actually written twice already and for some reason haven't been able to post, but I thought I'd give it another shot.
Presurgery, the PM tech. came in and interrogated my PM and she actually asked me about my breathing the night before when I felt like I had swallowed a large pill that wouldn't go down, and it hurt to breath from my ears to my sternum. She asked if it felt like I had a potato in my throat, and she said that the reason I felt that way was that the top lead needed adusting. She said it needed tweeking as if when you can see, but you add your reading glasses so you can read the fine print.
I was surprisingly happy to hear it, because it made me know that the things I'm feeling are going to be given attention FINALLYand that maybe I wasn't having a panic attack, that I actually do know my body.
Then she turned on the bottom lead and immediatly the pacing of my diaphragm began and she said that the surgery would correct it.
I don't know if I mentioned this before, but even with the lead turned off, I had still been having some sporatic pain in my diaphragm area, it felt like a sharp gas pain, but it didn't last as long as the ones when the lead was active.
After surgery, I felt and feel GREAT! I want everyone to know that you are not suppose to have any weird beats, or abnormal pains. I didn't realize that I should have felt good after surgery. Sure my actual surgery site over the PM was sore, but that's expected!!!
I had my second surgery 9 days ago now and I have to really remind myself that I can't do some things. I'm so ready though.

The very next morning after surgery, (the woman tech was the head hauncho and the man tech was great as well.) My PM was interrogated again BEFORE we left the hospital. I think this is very important..... I was asked to turn on my sides, stomach and even sit up and bend over. I was leary at first because of trying to be so still with my arm in the sling, but he assured me that it was fine and he wanted to be sure I felt no more beats in my diaphragm area or anything else out of the ordinary. It was wonderful. I felt energetic and ready to get on with living.
I had my fifth X-ray in a month yesterday. I will meet with my surgeon and cardiologist this Monday to double check and have an apt. with the PM tech later this month.
The xray tech allowed me to take a disc copy just in case the report got to my dr.s late. So I asked if I could see the previous x-ray when I felt sooo bad before this second surgery.
The previous one showed the bottom lead about an inch or even more below the bottom lead in this latest x-ray. I only looked at it for a minute, but it looked like it was right where my diaphragm is. ?? I'm planning on discussing this with my dr.s at my appointment. All the previous x-rays including the one at 4am the morning after my first surgery because I was complaining of so much pain, and the one I just mentioned above were reported as showing that all was in place correctly . It certainly could have been. I know that because I've learned the lead can play havvoc with the phrenic nerve , But I'd still like to see the x-rays compared for me.
I know I'm writing quite a lot, but just in case someone has a similiar problem/feeling going on, it might be of some help. I think there's something I'm forgetting to mention that I had planned to discuss, but it eludes me right now.
Inga, I feel wonderful, but you have given me another group of questions to feed to my dr.s Thank you and thanks for you well wishes.

You know you're wired when...

You can proudly say you’re energy efficient.

Member Quotes

A properly implanted and adjusted pacemaker will not even be noticeable after you get over the surgery.