Tom 's Journal

Pamela Gregory  Hi Tom, I also had surgery October 2022 for aortic valve and root. It has improved a lot but, when I get my heart pounding I feel a weird "discomfort" in my neck. Everything looks ok and it has gotten a lot better. No one seems to know why? My theory is that they said my blood flow was not very good before surgery and maybe arteries are expanding with exertion? As long as heart is pumping properly I can deal with it

J Alexander Lassally  Did you have a thoracotomy or open sternotomy Tom? Seems like the patients who have the thoracotomy may have different after sensations... 

Tom O Reilly   No I had an open sternotomy.... As I said its just when I exert myself the pain comes and goes when I stop 

Richard Munson  Thats a great question. I assume you get an annual echo which would i hope scan your repair for any minor leak causing a murmur. Mine is next week and i would hope it shows if my repair is repaired fully.  Else why have it. If my doctor says a have a slight murmur after ohs i won’t be a happy camper. If i hire a plumber to fix a leak and he says after completion, i fixed most of it but it still has a slight leak is that acceptable ? Maybe i am being overly simplistic and thats a bad analogy. 

Klara Čičić  Hi, it depends on the repair. If after the surgery there still is a bit of regurgitation left (which is to some extent tolerated, and it doesn't mean the repair was unsuccessful), there could be murmur left after the surgery. 
I had such a small jet of regurgitation left after the repair that it didn't produce any murmur after surgery. But now after the exertion I mentioned, murmur appeared and regurgitation on echo got sworse. I am now waiting for second opinion.... So, you need echo and cardiologist opinion, preferably the one who saw you after the surgery...

Klara Čičić  Rich, sometimes leaflets are just unable to be 100% fixed so minor leak after the repair is tolerated by the surgical team. If it is significant, then ofcourse replacement would be more viable option. It is difficult to set the boundary... And it is on the surgeon to decide during the surgery. Human body unfortunately although very similar to plumbing isn't so straightforward... 

Tom O Reilly   Thank you Richard and Klara for your input.
Im not sure what to think. 
Should there be no murmur at all after a successful repair. 

Richard Munson  I agree klara as you are smarter than me for sure but from a mental point of view, i expect perfection and if i had a murmur after seemingly successful ohs i would be a little agitated. But thats me. When i go to visit my doctors i am locked and loaded. I put their feet to the fire. Maybe they hate to see me coming. Lol. 

Klara Čičić  Haha... That is just what medicine is like sometimes. It isn't mathematics or some egsact science. My posterior leaflet was somewhat stiff, shortened, unusual, so I should probably be happy to have got the repair even if 100% closure of leaflets wasn't possible... Leakage before and after the surgery is significantly less and my atrium which was enlarged is now in normal range. So that shows hemodynamics is improved. But of course I was also little disappointed when I woke up and was told it was a bit regurgitation left, we all want perfection so I understand you completely :)  It wasn't easy to hear.... 

Tom O Reilly   I spoke to my doctor by phone since, he's not my cardiologist just my general practitioner. 
He said its common enough to still have some  sort of murmur after surgery , he said that the echo is the real test of how it is and how I feel. 

Richard Munson  Good luck tom for a good echo.  Sounds like others echoed my sentiments. I couldn’t help myself, sorry.

Leona Resch  I had a surgical avr last month and my doctor told me he expected to hear a slight murmur- very normal for a prosthetic valve. My first echo report yesterday showed normal heart and valve function so I guess all is good!

Leona Resch  Found this on this website from Dr, Castro

Doctor Castro: A murmur is very common.  A murmur is just a little sign that there may be a little bit of turbulence or abnormal flow through a valve.  That is the first signal that you need an echocardiogram.  The echocardiogram needs to explain what that murmur might be.  In patients who’ve had valves, the valve prosthesis, if you will, meaning either mechanical heart valve, or pig, or bovine or cow is an abnormal tissue that is suspended within a stent, within a frame.  That in itself produces a sound that we interpret is a murmur.  The most important thing about that patient is that he does need follow up because a murmur is just a murmur, the images on the echocardiogram determining whether or not that murmur is pathologic, meaning the valve is getting narrowed or  is leaking are more important.  So I am sure that valve is fine.

Rita Savelis  A heart "murmur" is a general/indefinite word. It just means a sound, which could be important or unimportant. A GP who hears a murmur usually sends one to a cardiologist who then can explore further to see if that murmur matters or not. Take care.

Klara Čičić  Hi Tom, my repair was 4 months ago, I have no pain in my arms, but I am tired. The thing I can completely relate to is chest discomfort, like pins and needles multiple times a day, couldn't describe it as a pain exactly but it is no fun when I feel it, it is just above the left side of the chest and ofcourse I think of repair failure all the time, especially since my murmur and regurgitation got back....now I wait for my echo to see (confirm) what's going on. Hope it is all in my head (the discomfort) and it is consequence of the stress and lack of sleep (got three little ones under 6 at home to take care of 24/7). As for libido, be cool with that being "paused" right now, you probably need more time to recover! I am sure eventually it will go back. I definitely overdid myself and now it is all coming back to me. Give yourself time and try to relax, see your GP (PCP), maybe find some mental support if all medical findings are ok ... Good luck mate

Tom O Reilly   Thanks for the reply
Do you think that you overdid it and did damage. 
I'm not sure if you can damage a valve repair. 
Just the past week or so I feel very tired and some discomfort in my mid chest area. 
Im thinking all sorts like yourself 
When are you having the echo. 

Richard Munson  13 weeks is nothing. Heart surgery is a major event for your body. Expect to be tired for awhile, normal. I had chest discomfort for a year even minimally invasive. Light work duties sounds normal. Not sure being 80 about going from super stud to super dud but hang in there. Should i rephrase that? 

Pamela Gregory  Haha Richard! I am about 13 weeks out also. Have some chest pain, on and off headache, and ringing in my ears. Not all the time but I also recently started back to work part time and it has definitely affected me. You are in good company with worrying that you did something to your valve. I have been worried but the consensus is that I am overdoing it

Rose Madura  Tom, your body has been through a lot and you have been through a lot mentally. Heart surgery is no easy task!  It's still very soon for you to feel back to normal.  Plus, I think we are super sensitive to everything body related because of our surgeries.  Give it time, everything will be back to normal soon.  Talk it over with your family doctor or cardiologist. They will set you at ease 

Susan Lynn  Tom - The fatigue lasts awhile. I'm not sure if it's the anesthesia, the drugs, or just plain healing, but I was tired for several months. Try a short power nap. It will help until your energy returns.

Robert Miller  Did you return to work after 13 weeks or long before? My surgeons didn't tell me this directly but basically it seems your heart should be fine after some 4 weeks. Don't push it to the very limit. You don't seem to do that so I very much doubt that anything you tell us you did would have caused any damage. Bones take a bit longer to heal. 20 lbs after 4 weeks. Lifting weights and skiing after 6 weeks. Golfing (which I don't do) after 12 weeks. Again, I don't think you did anything wrong. 

I didn't really have any pain after my surgeries. The incision was itchy for a couple of months. After my first surgery I had some almost constant discomfort on the right side of my chest. It felt kind of like needles. It never really went away until maybe a month after my second surgery. The pain in your arm might be from the way you sleep and/or do things. Maybe acupuncture might help. Check with your doctor if you can do it at this time (often they also do cupping and massages which is the bigger concern than the actual acupuncture). 

As for libido, I had changes probably about half a year before my first surgery. My wife blamed it on my heart condition but it didn't improve after the first surgery and neither after the second. But the second surgery is just 6 weeks ago so there is some hope. I don't count much on it, though. 

Klara Čičić  "Do you think that you overdid it and did damage. 
I'm not sure if you can damage a valve repair." A million dollar questions :))) I was definitely lifting my kids (14kilos), was having chronic lack of sleep almost every night and being under stress (we had mold in our apartment and had to do major changes, pros came to handle it, my youngest had bronchitis, this one time and I carried him to the ER as we was breathing heavily and medications didn't help, it was such a difficult period) I mentioned already I could write a novel only based on these 4 months...all that WHILE healing - that word sounds funny in my situation. It wasn't healing. So if your PCP and cardiologist say everything is fine with your heart, I would focus on finding any sort of mental support...whichever suits you. It can be a tremendous help in our situation. I truly believe your heart is fine and it will be fine :) keep us posted

Klara Čičić  I am also taking bisoprolol 2,5 mg, which is beta blocker :) reduce in potency, low blood pressure and possible tiredness are all amongst possible side affect, probably that's why Greg asked... But be careful when considering reducing your dosage, always consult your doctor, beta blocker is doing important job for our healing hearts at the moment! I was talking to my cardiologist about reducing the dose, but in autumn we can just start to consider it, he said, for now it stays ...

Richard Munson  I think i might know why. You just had heart surgery. In some perverse way, having no pain, which some seem to have, can be a bad thing and a good thing. Good cuz pain stinks but bad cuz you tend to over do it.

Pamela Gregory  I agree with Richard. Its hard to listen to your body when it isn't sending any slow down (aka-pain) signals. In that case I think maybe you should consider remembering you just had major surgery and still need to proceed with caution

Klara Čičić  But you will see your PCP? Do basic blood work, let him auscultate your heart and lungs ... Just to be sure we are not missing on something. But essencially Richard is right. Funny and right. 

Robert Miller  If you went back to work after Christmas then I guess it was about 8-9 weeks after your surgery. And even then it was light work. Hence, I don't think you did anything that could have caused any issues. As for being tired, check on your blood pressure, medicine could make you tired, your sleep quality might have changed, etc. You should discuss this with your cardiologist, though. 

Susan Lynn  Tom - Your pain shouldn't be increasing this far into recovery. I would recommend calling your doctor. It could be unrelated to your surgery. Please keep us posted.

Robert Miller  Discuss with your doctor. Having said that, I had some sore which was because I had to sleep on my back, i.e. always the same position instead of being able to sleep on my side or on my tummy. You can get serious rashes/sore skin, stiffness, etc if you are in the same position for extended amount of times. If your issue is rashes it might be good putting a soft cloth behind your back and exchange it frequently so no moisture is building up. 

Angela Meletiadis  Hello Tom. If you go through a few of the journals in this group, you'll find that there are a variety of complaints on pain. At four months post op, I've turned to acupuncture for some relief from the pain in right chest and armpit (from the thoracotomy). Gave up on paracetamol a month ago. I teach PE and will hopefully be able to extend my sick leave until Christmas, but if this keeps up, I'm going to request more time. I see tiny increments of improvement but I anticipated more by now. I believe I am impatient with myself. I think we all need to be patient with our bodies, especially those of us who are above 60.

Tom O Reilly   Thanks for that Angela., I was beginning to wonder was it normal, I'm impatient like yourself, just didn't expect so much pain, especially come evening time. 

I

Tom O Reilly   I read your journal Angela, I was going to try for mimial invasive surgery but ended up with open heart surgery.

We are both the right side of things and time is a good healer 

Klara Čičić  Hi Tom, I am 6 weeks post op and right arm and shoulder pain just started getting better! Be patient, it will get better. Metamizol pills helped when Tylenol didn't. Also Diclofenac gel on the skin area. Good luck

Robert Miller  I had pain in my back and shoulder. I am fairly sure it was due to having to lay on my back (I was told no laying on the stomach and side for I think 6 weeks). Massage was obviously out of question and with acupuncture you are also supposed to lay on your stomach. But maybe they can do acupuncture while sitting and/or cupping might help and is probably ok to do (check with your doctor). 

Patsy Stewart  Shoulder and back pain is quite common, but mentioning it to your doctor could help them help you. Have you tried taking some Tylenol to get ahead of the pain? 

Tom O Reilly   I'm going to my doctor tomorrow, I'm from Ireland, u presume Tylenol is paracetamol which I am taking, I was trying not to take too much bu that isn't working.. I guess its a common complaint as you have all said, I'm also wondering is it due to my lack of shoulder and arm exercises that I was supposed to be doing since coming home. I'm doing them now but it's very sore. 



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Robert Miller  I was not told to do shoulder and arm exercises. I am not sure what kind of exercises you were supposed to do but anything that puts pressure on your chest is probably bad. If you had open heart surgery your bones need to mend and that takes 6-8 weeks. Having said that, some massaging of your shoulders to get nots out is probably ok if it is done while sitting. But discuss with your doctor.   

Rose Madura  I had terrible shoulder pain which I was told was from the way you were positioned on the operating table.  It will get better. A heating pad helped....

Angela Meletiadis  Tom, I think you're right about time being a good healer. Also, don't be dissappointed about open heart surgery, if that was the best option for your situation. You WILL get better and so will I. The pain will one day be history! And by the way, my HEART is working wonderfully, I'm climbing stairs, taking long walks and riding my bike on quiet streets!

Klara Čičić  I am very glad everything is good. When you have more strength, you can write the whole experience... Hang in there! 

Deena Z  Congrats, heart warrior.  Best feeling ever to have a successful surgery and are now feeling better.  Major.

Susan Lynn  Tom - I had minimally-invasive (mini-thoracotomy) nearly five years ago. I would do it again in a second. I might ask your cardiologist why he is apprehensive about it. The mini-thoracotomy takes about the same amount of surgical time as a sternotomy, there's less discomfort, and faster recovery. What's not to like?

Tom O Reilly   Thanks Susan for your reply
I think from reading up that I would be an ideal candidate for it 
I will have to ask my surgeon why I couldn't get it 

Richard Munson  Sometimes if a doctor or hospital does not have the cutting edge capability they might not suggest a certain way of doing a procedure. Works the same in other fields as well. Your car mechanic may not have the latest and the greatest so therefore he will do your engine valve job the old fashioned way. Doesn’t make it right or wrong. Once they penetrate, the surgery is pretty much the same when they get inside. As susan suggests, whats not to like. I had minimal almost 2 years ago and so far so good. I have a 2-3 inch scar on my right chest vs. a zipper down the middle. That was my particular surgeons claim to fame. I think my down time was faster but of course i can only relate my own experience. I also discovered after that i have an aortic aneurysm that may need to be fixed some day on the other side.  Would they have fixed that by splitting me open? Maybe yes, maybe no. Only if they saw it i guess. Once you’re under they can’t ask you any questions like, we just found this other issue, should we fix it? You go on faith . Lets face it, to some degree you are playing the odds no matter what procedure you undergo. There is no 100%. Thats why doing your homework is vital before something as major as heart surgery. 

Richard Munson  Yes, tom, i had repair not replace but i also knew that once they got inside and saw my mitral valve up close that repair might not be possible. Echos and xrays and ct scans are great but up close and personal is the best. Luckily the valve was repairable. I say luckily, who knows what the future brings. My situation being 80 is different from someone 60. My daughter likes to tell me i am in the last 10%. Cold. 

Tom O Reilly   I live in Ireland and minimal invasive heart surgery is not that common, the surgeon I'm seeing does it but it's not as common as open heart.
That's the problem 

Tom Everson  Hi Tom.  You are taking charge of your own health, which is great. Keep asking questions until you are ENTIRELY satisfied. The bottom line is you have to have complete faith in your surgery team . If the team you feel comfortable with still wants a more complex procedure than go with it. I was in your boat and it turned  out to be smooth  sailing.   By the way I am 49% Irish 

Howard Powders  Tom: The simple truth is that a significant number of cardiac surgeons never learned the difficult minimally invasive  techniques to repair or replace heart valves. One needs to “shop around” to find one. They can almost always be found at the top hospitals mentioned on this site!! My  cardiologist recommended surgeon only did the “chest zipper.” So I found a highly rated surgeon  on my own who did minimally invasive mitral valve repair instead. The small scar, off to the right side, is now hardly noticeable, 9 weeks later. I also had no other issues; just a severely regurgitating mitral valve. 

Richard Munson  My wife is irish does that count. No comment on whether that is good or bad in her case. Tom you may need to head across the pond and i can call my surgeon in boston. We have a spare room. Lol. My surgeon is ukrainian / american and is a mitral valve minimal invasive guru. A little hard to understand but who cares. Hopefully he did not go back to fight. I doubt it. If you have any dog allergies i’m sure howard would put you up. 

Tom O Reilly   Your one of us Richard
I will see what my surgeon says when I meet him 
But I want to have as much information as possible before I meet him 

Janelle Hurst  Hi Tom, I had minimally invasive surgery for my mitral valve repair this last February at age 41.  I wanted to have a recovery with less restrictions (like for lifting, etc).  I agree with everything everyone has said so far.  The most important thing is to find someone you trust and feel comfortable with who is very skilled in doing mitral valve repairs.  The route is important but not as important as the overall skill in doing the repair.  Research as much as you can about the procedure and available surgeons.  Don't be afraid to ask a surgeon about their skills and experience.  I wish you the best in your search!  

Tom O Reilly   Thanks Janelle
I am glad to hear so many positive stories about minimal invasive surgery. 
Hopefully I can get it done 
In Ireland it's not that popular. and I seem to be getting guided away from it by my cardiologist, I will get an opinion from the surgeon I am meeting 

Rose Madura  I'm always an advocate for a 2nd opinion and for doing your due diligence.  You have to be your own advocate.  God bless you on your journey.

Richard Munson  Tom let us know how it goes. One thing to keep in mind, no matter full zipper or minimal invasive or now robotic is that its all open heart surgery. From what i read here, the robotic method is the least invasive but not all hospitals offer it. I think its called a da vinci machine. He invented it while painting upside down in the Sistine chapel. Probably not. 

Erik W.  I did minimally-invasive aortic valve and aorta root replacement back in June, definitely the way to go if you have a surgeon experienced in the procedure. 

Kristine Schroeder  I am 7 weeks post op from minimally invasive right side thoracotomy to repair severe mitral valve regurgitation. During surgery doctor discovered Barlow’s disease and had to do additional repair.  I can’t compare to full sternotomy, but I have minimal discomfort and have resumed normal activities. Good Luck!