Up Date with New Game Plan
- by Andiek11
- 2024-05-02 19:27:46
- General Posting
- 529 views
- 16 comments
Just home from the hospital . The original game plan was to impant a Medtronics CRT-P but they had to change course mid-procedure becuase they could not find any vessels that would allow them access to the left ventricle lead implant location. The back-up plan called for the installation of a 2-lead, Medtronic Azure system for Conduction System Pacing which is what happened. I hadn't researched this option quite as thoroughly as the CRT-P but it had been discussed as "PLan B" in case of this scenario. Procedure was long, (I blissfully slept through it all), but all went well. My limits are set at 60 and 130. One lead is in atrium and one directly in the LBB.
While it is early days for using conduction pacing for LBBB a lot of data is very promising. Does anyone have any experience with this type of system? It seems intuitive in that they are utilizing the nautral pacing pathways and I only need 2 leads instead of 3, but one of the challenges already floating to the surface is that I have a really healthy AV node with strong signals, so thay are struggling to get the pacemaker to "fire" before my natural signal which means they are struggling to lower my QRS to 150 or less. I was at 164ms prior to procedure and now I'm down to 152. Normal they said was 95-115 (I think). They were hoping to get QRS closer to 140 but they are limited in how low some of the device's settings can go (past my then still druggy mind to remember which parameters they were talking about). As my heart gets used to the pacemaker can/ will my QRS continue to lower on its own? Does anyone have any experience with conduction pacing?
Finally any hints on how to manage an extraodinarily sore shoulder, upper arm & back. Also why is this are so sore? The incision and device do not hurt at all, but the shoulder/arm/upper back are really uncomfortable and pain is only minamally managed by Tylenol. Norco was provided in the hospital but PA woudn't send me home with any. Funny a different MD wanted to prescribed Norco for my husband's bruised ribs recently (he declined appropriately), but the cardiology team will only endorse OTC tylenol for this surgical procedure.
Apologies if this post reads a bit disjointed but brain cells are still coming back on-line. :)
16 Comments
Congrat's
by Good Dog - 2024-05-02 21:58:12
I have little time this evening, but I just want to wish you well and give you a quick congrat's for successfully cruising through you procedure..........asleep! It must be nice! I had two last month and I was wide awake through both! Not by choice.
I don't know what you are being treated for. I took a quick look at your bio and I still do not know. I Think your 2-lead, Medtronic Azure system is designed to treat atrial arrhythmias, but that is about all I know. I am not even sure of that. I am sorry that I can't be more helpful.
I am just happy that you are obviously doing very well and on the path to a good recovery! Just keep your incision clean and dry at least for the first week! Also, ice helps with swelling.
I wish you the very best!
Sincerely,
Dave
I had the CRT-D implanted last year...
by USMC-Pacer - 2024-05-02 22:55:05
At the time, my EF was as low as 30-35 in ONE echo. After implant, it went up to 45-50 and hasn't changed much since. The end of this month, I'm going back in so they can lower my QRSD. Just like you, my AV node is normal. For whatever reason, when they implanted this, they ignored my good AV and set this up as CRT only to syncronise mechanically. It worked, and it helped! My QRSD prior was 198ms. It went down to 148ms. Now, they want to get into the nitty gritty of the electrical side. Medtronic has options in the AdaptiveCRT settings that can allow for your own AV to do the work and they fuse (fusion) the AV to the ventricles and VV (ventricle to ventricle). They tell me this will lower my QRSD significantly. Why not do this in the first place?
Funny, I don't have symptoms and feel great on exertion no matter what I'm doing. But, if they can make it better, sign me up :)
I keep reading that the lower they can get your QRSD, the better the results for heart function and reverse remodelling. I'll let everyone know how it turns out :)
New to Pace and Good Day
by Andiek11 - 2024-05-02 22:56:49
New to Pace - thanks for your suggestions and counsel. It helps knowing I have ready access to so many compassionate, knowledgable and experienced people. I am icing and have been quite saturated with education by my care team. I just wasn't prepared for the shoulder / arm pain. I've read other's comments on this, but thought it was more of a one-off experience vs "to be expected" experience. Live and learn. I'll take the tylenol as directed but strongly feel there is a lot of room for improvement in pain mgt. (and I generally have a very high pain tolerance).
Good Dog - I was dx'ed with a non-ischemic LBBB about 26 yrs ago seconary to a cardio toxic drug I received for cancer about 33 years ago. No other conduction or rhythm problems. Over the years my EF gradually dropped to 40%. I was told when the LBBB was dx'ed that eventually I'd need a pacemaker so I'd check-in every 10 years or so with a cardiologist to see what was happening. My only symptoms have been a gradual, but noticable decrease in energy upon exertion (hiking, biking, swimming, working out in gym, etc.). I was aware of it but few others were. So last year the recomendation was to pursue CRT-P if I passed all the screening tests which i did. I'm sure I'll get through these next few days and I don't regret taking this step but at the moment I'm immersed in a case of the uncomfortable grumpies. Many thanks for your good wishes. They're truly appreciated ;)
Stay Ahead of the Pain
by IrishToast - 2024-05-02 23:02:57
For whatever reason, I had significant pain I was unprepared for, the second morning going to the ER with symptoms caused by pain. The ER doc advised staying ahead of it with 6 extra-strength 500mg Tylenol every 24 hours.
The scheduled that worked fo me. 7:30 AM two. 4:00 PM one. 10:00 PM two. 3:45 AM one.
USMC - Pacer and Irish Toast
by Andiek11 - 2024-05-02 23:17:32
USMC-Pacer, hope all goes wonderfully for you with their attempts to "tweek" your devise to provider even better results! I'll keep my fingers crossed for you. I think the idea of trying to engage the still functioning parts of your heart (or anywhere in your body), with an assisted mechanical / electrical solution seems so logical. Glad that science and medicine are delving more into these concepts now. I too hope that they can get my QRS lower - but for me that might have to involve increasing my metoprolol. This will be discussed on July 30th when I have my next cardiologist appt. A work in progress!
Irish Toast, thanks for sharing your tylenol schedule. I agree that with pain, getting ahead of it is the name of the game. I've been told to keep taking tylenol every six hours and am doing so. But do you ever notice that when you can take a med every 6 hours that it always stops working at 5 hours???? *lol arrgh!*
pain
by new to pace.... - 2024-05-03 06:16:31
I took one every 3 hours but no more 6 per 24 hours that covered the lapse.
new to pace
I think that I understand
by Good Dog - 2024-05-03 07:11:30
Although I am certainly no expert (quite the contrary), it seems that you received the next best thing to a CRT. You must have a really great medical team! I assumed that your ejection fraction was low, because it seemed to me to be the most logical and perhaps only reason to get a CRT. However, I just was not sure until you posted here. In any case, I do know that you received the absolute best placement of your leads for providing a more physiological activation pattern. Great news! Since the whole purpose here was to improve synchrony and restore your EF to fix your CHF, this is a great alternative and very likely to be successful since your AV Node is fully functional. Something to celebrate! While I am sure the remedy for your QRS is troublesome, it may improve over time. If not, there seems to be various ways to try to fix that in due time. The important thing is that you have a great prognosis!
I completely agree with you on the lack of pain management. The Cleveland Clinic just told me that for my procedure I am only allowed Tylenol. I thought; who in the hell made that rule. The same for everybody? I had two procedures and was really sore after that. While I can say that I obviously got by without pain meds, they certainly would have made my recovery easier and more pleasant. They would only have been needed for a couple of days. Do they really think after two days of pain meds I am going to go out on the street and start buying fentanyl?
Anyway, you have every reason to think that you will start feeling good again. So enjoy your new life!
Sincerely,
Dave
It will get better
by Gemita - 2024-05-03 07:35:14
Andiek, I am so sorry that you are in such discomfort. It is difficult to know why. I was also very uncomfortable when I woke from surgery. I know they like to avoid pain relief meds like Opioids, but they should be able to give you something stronger than Tylenol for a few days to help relieve your symptoms.
I had a course of neuropathic pain meds because of nerve pain. Unfortunately they can traumatise delicate blood vessels and nerves during the procedure and this can cause immense discomfort while we are healing. If you notice any major swelling or skin colour changes though, please seek advice, but do please ask for adequate pain relief.
What an eventful day you had and I am glad your team had a back up plan. There are a few members of the Club with left bundle branch pacing, with varying degrees of success. I see you are having difficulty reducing your QRS to an acceptable level although your QRS was always high. Even so a reduction from 164 ms to 152 ms is a start in the right direction.
There are many device programming options/combinations that can be tried. Many conduction system devices have built-in algorithms with an individually tailored AV delay for instance, so it might be possible to obtain a greater reduction in QRS duration when all of your settings are optimised or when other treatments have been tried. I note you may need more beta blockade (Metoprolol). In any event, benefits from synchronised pacing may not be seen immediately and may take several months or longer to show any improvements, so you might have to be patient for a little while longer than 24 hours.
Your progress is very important to all of us. Please stay safe and well and I hope you feel better very soon. Good to have you back with us
💐❤️🩹
by Lavender - 2024-05-03 08:20:25
Hi you. I'm sorry to hear of your pain. I'm glad all went well. Pain is so attention getting, isn't it? It makes us sad and edgy. I can tell you it won't always be this way.
I think the pain is from being stretched and pulled during surgery. My left arm, neck and shoulder, back hurt a long time. I had no pain at the incision site. My friend was ice. I had ice packs front and back. Tylenol was all I was told to take-650 mg every four hours.
As soon as they approved it, I went for a therapeutic massage. Thereafter I went every two weeks and she got the arm, shoulder and back loosened up.
You have to keep moving it. Just keep it elbow below shoulder. Ditch the sling if you were given one.
It's going to be ok. It just is. May God send healing your way, and surround you with comfort and peace as you move forward. 😘
Lavender, Gemita and Good Dog - Thanks
by Andiek11 - 2024-05-03 11:34:59
Doing better today - probably helped that I was able to get a few hours sleep last night - something that I did not do in the hospital. Pain down by a good 60% but I'm sticking to my tylenol at least through today. I get to remove the bandage on Sunday but no showers till next Tuesday. All do-able. And oh, did I mention that the health-care gods are conspiring against me in that I'm also in a soft cast for a broken foot that is very, very slow to heal? *lol* So limited upper body and impaired lower body. However, my toes and fingers still work... ;)
I'm a bit more aware of the device today, but not in a bad way. I'll consider this a good day in that I was successful in getting all of the orange antiseptic scrubbed from my body, I'm dressed and mentally planning how to make the eggplant casserole we'll have for dinner tonight (and yes, my dear hubby will be helping) :)
Me, being me, I will have a "follow-up educational discussion" with the EP PA / EP about the philosophy on pain management at my check-up in a few weeks. It feels like they spend so much time asking about your level of pain in the hospital and offering drugs, and then magically assume that upon discharge this need instantly disappears. Not acceptable. I don't expect to change the system, but I do have some skill at being a judiciously planced thorn in the system's side. *haha*
And finally, just having a place filled with compassionate, educated ears / eyes to validate my experiences is worth its weight in gold. Many thanks to all who've taken the time to respond.
A link from another member with left bundle branch area pacing
by Gemita - 2024-05-03 11:39:26
A link below from another member who has had a left bundle branch pacing lead placed. As you will see from his comments in his last paragraph, improvement was not immediate so give the heart time to adjust/heal before you push yourself.
https://www.pacemakerclub.com/message/42193/left-bundle-branch-area-pacing
Experiences with LBB Pacing
by DoingMyBest - 2024-05-04 13:08:43
Welcome to my world. I'm one of the more recent recipients of LBB pacing here. I got my pacemaker at the end of August '23. I went in expecting a CRT-P, but the morning of the procedure was told "I changed my mind. You're getting a standard dual lead pacer with left bundle branch placement."
At age 67, as a result of genetics, a decade of anti-arrythmia drugs, mitral valve repair, and a rentrant AV node (SVT) ablation, my conduction system was compromised. I was diagnosed with bradycardia, LBBB, RBBB, first and second degree heart block, occassional minor pauses, PVCs and PACs. My EF had dropped into the 40's. QRSd was ~145ms. I was pretty much asymptomatic, so feel fortunate this was a proactive pacemaker placement before things got worse.
Afterward, I researched what the EP did for me. From what I learned LBB placement is state of the art. It is better than HIS bundle placement and seems as good or better that bi-ventricular CRT pacing. LBB placement can be selective (exactly hitting the LBB) or non-selective (close to the target LBB, but not precise). I found out that my placement was non-selective. The EP said that selective was doable, but that it would have taken a lot longer and not worth the effort (my words, not his). Hmmph. Conduction to the right side can be natural, retro-grade through the AV node, or side-to-side through the myocardium and/or purkinje fibers. How you conduct to the left and right ventricles, whether parallel (natural) or more serial (left to right), affects the QRSd. It seems to me that CRT does a better job of parallel conduction and decrease of QRSd. But, with LBB pacing, while maybe not always quite as synchronous, is good enough.
I am now paced ~23% in the right atrium and 98% in the LBB (placed in the septum of the right ventricle). My QRSd did not change. It is still about 145ms. The EP says this is fine. I've had one echocardiogram since the pacemaker placement and the EF has improved to the 50s. It took awhile, perhaps three months, for my heart to get over the irritation and for the PVCs to settle down. Today I'm doing fine, no symptoms to speak of.
I'm pleased with where I'm at today. Things have improved. Long term, I don't know if this will be my permanent fix. But, if it's not, I'm confident there are other options available.
Sorry, I can't comment on your pain issues. I was fortunate in that my pain was minor and resolved within a week or two.
Good luck with your new pacer. Don't worry too much about your QRSd. Don't expect it to change much on its own. See how the rest of the heart is doing and whether you're having any discomforting symptoms.
DoingMyBest....
by Andiek11 - 2024-05-04 17:26:11
If I could jump through the keyboard and give you a hug, that's exactly what would be happening right now! Your post has been a god-send. Thank you!!
Presurgery we discussed CSP in LBB and its potential benefits over CRT-P, but my EP said he still wanted to see more data before using this as a first time approach so CRT-P remained Plan A. My hubby and I left that appointment both acknowledging that we kinda hoped that I'd end-up with CSP but then let the thought go as we wrapped our minds around Plan A, CRT-P. I didn't really do any additional research at that point.
Now that I have the CSP placed in the LBB, I have a millions questions and of course no easy access to the EP. All I can do is read the surgical report and the reports of the EKGs done before and after surgery, and google. I was concerned that the QRS not dropping below 150 on the ECG meant I still had the dysfunctional LBBB (the reason for this whole shooting match!) and that in the end I might not see any improvement in the EF. Your note however has brought me back from the edge and opened the "hope" door ever wider for improved EF in the comming months. I have my wound check on 5-17. I know I'm not supposed to see the doc then, but perhaps the RN or NP will be able to answer some of my questions.
Very sincere thanks for posting.
Hope these links help
by Gemita - 2024-05-05 04:38:21
The links below which need to be copied and pasted into your browser to open, might help answer some of your questions Andiek11. From the first link, you can download the full size conduction system pacing area chart which gives you lead placement "positions".
Although I do not have conduction system pacing, I do have my right ventricular lead of my dual chamber pacemaker positioned in my right septal area. Some studies appear to show that right ventricular "septal pacing" is associated with a lower risk of heart failure/cardiomyopathy compared to right ventricular "apical pacing". Septal lead placement does not appear to result in a significant increase in procedure complexity nor higher complication rate, although further control trials are needed as always to confirm this.
It may be trial and error and a variety of treatments to get you to where you want to be, but be guided by how you feel, not by those numbers. If you feel well, chances are that you are pacing the right amount of time, in the right place at the right time(!)
https://www.radcliffecardiology.com/image-gallery/12837/9611/conduction-system-pacing
https://www.britishcardiovascularsociety.org/__data/assets/pdf_file/0030/68916/Akriti-Naraen-Conduction-system-pacing.pdf
Gemita
by Andiek11 - 2024-05-05 11:21:46
I can see that your "angel wings" have madly flapping about in your successful efforts to help me! Thanks!!!! These links are very helpful. In the end I think I need to schedule a telehealth appt with the EP (or my cardiologist whom I feel communicates much better), to get my very legitimate questions addressed.
You know you're wired when...
You can finally prove that you have a heart.
Member Quotes
Do feel free to contact the manufacturer of your device. I have found them to be quite helpful when I have had questions and concerns.
glad that is over and you are going to be mending
by new to pace.... - 2024-05-02 21:45:40
They give Tynenol as the pain is not really that bad. You will problaby be sore for a couple of days. i slept on my back on a recliner for a couple of nights. Do remember to move your arm/shoulder just not above your shoulder. As you do not want a frozen shoulder. Ice is also your friend, do not put it directly on your skin, use a towel first than the ice. Also stay hydrated to flush the drugs out of your system.
Am sure they gave you instructions as to what you can and should be doing. Also write down any question you have to take with you at your first checkup. They generally set the pacemaker limits to 60-130.
Get some rest.
new to pace