New member - clicking and pain

[toughcookie]

Hi everyone, this is my first post!

I had emergency surgery end of Sept, an infected cyst in the center of my heart had all the doctors fooled - and by the time they figured it out, I was in septic shock and very near death. I'm only 34, the mom of a 2 year old, so noone thought it was heart trouble. Everything about this has been shocking.

I am curious about everyone's experience with the ticking. I can hear it all the time. I hear it right now over my typing fingers. At first, it was really awful, and I'd have to wear ear plugs at night (then, I heard it internally anyway). I tried to find some sort of resources out there for dealing with this, but there is absolutely nothing. It doesn't terrify me anymore, I can generally ignore it, but there's times when it gets me downright mad. I suppose I'm still harboring emotions, a doctor said I probably have post traumatic stress, and therapy would be nice, but for now, I'd like to know how others have dealt with this.

Secondly - let's see, it's been a bit over 3 months - and I STILL HURT LIKE CRAZY! I still have to take darvocet at night. When I sneeze, I get shockwaves of pain. If I lay reclined too long, I can't get up. I am doing really well at rehab, but this pain just won't quit. Please tell me I'm not the only one.

I look forward to getting to know everybody. It means a lot to me to know that I'm not alone.

 

[Ross]

Everyone is accoustically different. Some can hear their valves loudly, others barely at all. You will get used to it and if you find it hard, remind yourself that because of it, you are alive today. That might make it seem a little more worthy to be an annoyance.

As for your pain, hey, you had open heart surgery and were sawed in half, your going to hurt for a bit yet, but by now, it should get better and better everyday... Have you informed your surgeon that your still in this much pain? Might be worth a chest xray to see what's going on.

 

[EireCara]

*Welcome......

*Welcome......

*HI there and WELCOME to this wonderful site. Boy you really must be a ''toughcookie'' to have gone through all that !! Sorry I havent got any answers for you as I havent had surgery...yet !! I am just wondering what symptoms you had and for how long???

 

[CathyK.]

I also want to welcome you to this site. I haven't had surgery yet either so I can't lend any help your way as far as the pain or ticking.

 

[geebee]

Welcome.

I rarely hear my valve anymore and it is much quieter than the old Bjork-Shiley I used to have. Sometimes I am surprised by it when I can hear it and I get fascinated about being bionic. You will get used to it and consider it a "friend" that saved your life. If your neighbor pulled you out of a river to keep you from drowning, you would not want to silence that person. Try to think of your valve the same way - a slightly annoying but dear friend.

As Ross said, you have have major surgery and pain is a side effect. Unless you cannot function or the pain pills stop working, just give it time. Since you only need pain pills at night, you are well on your way. Night can be the hardest because you have been active all day and your body just plain wears out. BTW - sneezing will hurt for a long time.

 

[Cooker]

Welcome TC,

The ticking gets better and the pain goes away. I would think that the pain would be to the point that you sould not need meds now but everyone is different. If it keeps on call your surgeon.

Cooker

 

[Mary]

Hi, and Welcome!
There's another thread going that discusses the noise of the valve.

http://www.valvereplacement.com/forums/showthread.php?t=19208

You might want to check it out.
I agree with Ross, at three months post-op, I think I would mention it to my cardiologist. I'm assuming you've already been released from your surgeon's care.
Good luck, and once again, I'm glad you've joined us.

 

[toughcookie]

Thank you for the welcome and quick answers!!!!!

I had gall bladder surgery the end of August, then all thru Sept I was coughing and feeling awful, running a low temp (100) - my family doctor kept thinking there could be an absess from the gall surgery - so she kept me on antibiotics, which saved my life. By the time I had open heart surgery, the cyst was big, but the infection had been cleaned out.

My mom has cardiomyopathy (sp?), so the docs think I might have had the same, attracting the infection to my heart like a magnet. Still, they are all dumbfounded by my case. There was apparently a meeting just a week ago with everyone - surgeons, echo techs, cardiologist - trying to get to the bottom of things. They may figure it out someday b/c it is going to be a "learning opportunity" for the medical community... Yay me! (ha ha)

I suppose I should talk to my surgeon about the pain. It is definitely improving daily, and I do have, um, two large physical impediments to my healing, but it's worth a phone call, for sure. As for the ticking, sometimes I'll yell at it to stop, and then it occurs to me just how important it is, and that it is a symbol of life. Kind of like this enormous scar.

 

[StretchL]

...it's been a bit over 3 months - and I STILL HURT LIKE CRAZY! I still have to take darvocet at night. When I sneeze, I get shockwaves of pain. If I lay reclined too long, I can't get up. I am doing really well at rehab, but this pain just won't quit. Please tell me I'm not the only one.

Hi, Toughie... welcome to VR.com. You've come to the right place.

I can't say that I ever eperienced the kind of pain you're talking about post-op, and I certainly hope yours diminishes soon. I will also second what Ross said about what our bodies have been through.

I had a colleague of mine photograph my entire AVR surgery (images to be posted soon, I hope), and one of the things he related to me about the surgery was how really rough the surgeons/nurses had to be with my body in order to do what they had to do.

At one point, he said, there was a guy, a *big* guy, pulling my ribs apart by leaning his full weight back on his heels and anchoring himself, almost like a water-skier, to my rib cage/sternum. Chad, my friend, says it hurt him just watching that!

 

[Mary]

" . . . . and one of the things he related to me about the surgery was how really rough the surgeons/nurses had to be with my body in order to do what they had to do.

At one point, he said, there was a guy, a *big* guy, pulling my ribs apart by leaning his full weight back on his heels and anchoring himself, almost like a water-skier, to my rib cage/sternum. Chad, my friend, says it hurt him just watching that!"

Now that should be comforting to all members in the waiting room--NOT!

 

[StretchL]

Now that should be comforting to all members in the waiting room--NOT!

Ya... I'm kind of debating in my mind how much of what Chad told me, and how many of his more graphic images, I should post.

I'm of the mind that knowledge is power, though. And for those who want to look, the pictures should be fascinating. Those who don't, won't.

In any case, the most soreness I had was on my right side, and he said that guy's weight was on my left side. So it's all a non-issue, really. I have no recollection of it, and suffered no pain due to it.

 

[Kate]

Hi Toughcookie!
I had surgery last year at 38 to replace my aortic valve and and fix an aortic aneurysm. Like you, my pain lasted much longer than expected. My GP happens to be an osteopath and found that my ribs had not been aligned properly when I was "put back together". An initial adjustment made immediate improvement and follow-up adjustments resulted in a complete end to the pain. Of course, this may not be what is causing your situation, but it might be worth making an appointment with an osteopath to check.

Unfortunately, I can't offer suggestions regarding your noise as I have a biological valve but hopefully others will be along soon. Take care, Kate

 

[RandyL]

Wow I want to see that video. Lets get it up here to view. I will supply the popcorn.

 

[Susan BAV]

Hi TC (tough cookie)

The only really bad pain I had at three months out was related to a dislocated cartilage from a rib that has had trouble healing. Oh, I was also cleared at 3 months to see a gentle chiropractor and he got a few things back into place for me, I guess from the surgery, like a pain I had in my shoulders.

Where is your pain? Are you lifting to much? Do you have wires in your sternum and could they be bothering you? If that's the case for you, do a search on it because some here have had them taken out and you could read their experiences.

Could your pain possibly be rebounding from your pain medications?

Whatever the cause, I hope you have some relief soon.

My dad was diagnosed with hypertrophic cardiomyopathy, maybe like your mom, and his docs were always thinking that I would eventually develop it also. He was trying to arrange to go down to Baylor, Texas to get the alcohol ablation but he got derailed by a diagnosis of advanced cancer of the esophagus. Some of the strong meds he took for the cardiomyopathy possibly contributed to the formation of the cancer, which developed from chronic indigestion.

You know now that you should always take antibiotics when you have any dental (or female) "work" done, even cleanings, right?

I've heard that the ticking usually becomes less of an irritant. The mind is powerful in that what we tell it can help us deal with a lot of things.

Glad you found this site! You'll learn a lot of things here and probably be encouraged too!

 

[WayneGM]

Originally posted by toughcookie
When I sneeze, I get shockwaves of pain

I'm 10 months out and when I sneeze I still know it! Although certainly not like the "pain" I had if I sneezed those first few weeks.

Welcome to the community. I can't offer any more advice than asking your doctor about the pain. At 3 months, I was long off pain meds, except the occasional tylonol on those "bad" days. At that time, "bad" days were either because I over did it the day before or when the weather was changing (I was more accurate than the weather network ).

Glad you found us!

 

[toughcookie]

You are all wonderful! In the last three months, I've gotten excited about the tiniest snippets of advice that relate to my situation... and here's a whole page of completely helpful and relevant information. Thank you SO much.

Susan, I hadn't thought about the lifting. Of course I'm lifting too much, I have a toddler If that's what's causing the pain, then so be it. I am just grateful beyond grateful that I have the opportunity to still be with him.

Stretch, Ouch. Eeesh. I definitely would NOT want to see my own surgery. It was bad enough watching the guy yank out the chest tubes like he was starting a lawn mower.

 

[Mary]

Ya... I'm kind of debating in my mind how much of what Chad told me, and how many of his more graphic images, I should post.

I'm of the mind that knowledge is power, though. And for those who want to look, the pictures should be fascinating. Those who don't, won't.

In any case, the most soreness I had was on my right side, and he said that guy's weight was on my left side. So it's all a non-issue, really. I have no recollection of it, and suffered no pain due to it.

It's funny, but after all I've been through--five pregnancies, 2 C-sections, abdominal surgery, sinus surgery, and last, but not least,valve replacement--I still shut my eyes if I have to have blood drawn. Frankly, I feel that I'm getting more squimish in my old age, or just less tolerant of letting people poke and prod me. Viewing your pictures won't bother me, because it's YOU on that table instead of me! Just leave me in my state of De Nile!

 

[Karlynn]

Welcome Toughcookie! And I picked up on the 2 year old at home really quickly. I'm wondering if you are still experiencing some pain because of your little crumb cruncher? If you have been picking him/her up a lot, and might have done so before you were really physically recovered enough to do it, this could be a reason why you are still experiencing pain in need of meds.

I had my valve replacement when my children were 5 and 7. Old enough so I didn't have to pick them up or move them around, or even having to dress them, but the physical requirements of caring for a 2 year-old are quite strenuous. I'm guessing that you were probably doing all the physical "mom" things before, and more than, you really should have. It's really hard for a Mom to stop doing daily Mom things.

If you are still having pain that requires you to take pain meds, then I would suggest you do a little analysis of what you are doing throught the day and try and target those things that would be putting stress and strain on your chest. Then try really hard to decrease those things for a while.

Welcome to the family!

 

[toughcookie]

It is really hard not to do mom things. I bet you're right Karlynn... as much as I know I'm holding back, I do still pick him up and technically he's out of my lifting range. I bet it's the wrestling, though, you know, "We need to get your coat on" that really does it. I can do well with verbal threats... "Mommy is going to take away Thomas AND James AND Mavis if you don't cooperate" I do need to do better.

My boy is also a pumpkin pie... especially b/c he has read hair!

I realized last night that when I inhale deeply, when I'm about 75% full, my ribs click/thump. I am definitely calling a doctor today just to run this pain thing by him.

 

[farmgirl]

Hi Tough Cookie,

Four years ago I had a carbomedics mitral valve placed. When I woke from surgery I could hear the ticking and it has never stopped. (thank goodness I guess). Like you, I have had a terrible time with the sound. I could not stand ticking clocks before the surgery, so I was in big trouble.

There have been many times that I wish I could just reach in there and squirt a little oil or something to make it be quiet! I, too, say to my chest "shut up". I am sure that looks kind of odd sometimes

But, I do have to say that over time it has not bothered me as much. I think I have just gotten used to it. I do notice that when I am tired or not feeling well, it "thumps" more. I had the flu a a few weeks ago and it was doing a tap dance in there. That should have been a signal to me that something was going on with me.

I had a lot of trouble sleeping due to the clicking, but again it has gotten better. I think maybe I have just accepted that this is what saved my life and it is just a part of it.

Hang in there. It may take time, but it will get better.

Have a nice day. Diane