Ok ... truth about pain

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Allisoninoz

Well-known member
Joined
Apr 8, 2010
Messages
235
Location
Melbourne, Australia
Ok, I'm venting here, so please don't feel obliged to answer. I'm just having a whinge.
I'm up and down, all over the place emotionally. Trying to be positive but then sink into everything that can go wrong. And now I have to see an endodontist because my dentist is concerned my front tooth (that has had root canal work in the past) is a bit sensitive. Don't want a nasty infection there, he said. So, very luckily, a cancellation meant I could see endodontist first thing tmw morning. She may 'redo' the root canal treatment (but not tomorrow) before the surgery. I'm just SICK of all the appts etc and they've barely even started!
I also saw a psychologist today and she urged me to do relaxation exercises and also reassured me that they are far more aware of pain these days than in the 1970s when I had my cardiac surgery as a child. All I remember from then was how much it hurt getting tubes pulled out and doing physio.
Are they nicer these days? Have others had experiences as a child and can compare it to as an adult? I want to be tougher but it's really hard :(
How on earth do you all stay positive???? Any advice appreciated ...
 
hi allison, ok heres the deal,when i was told i needed my op,i went to pieces,i hadnt even had a minor op at a hospital,and i had a fear about the place anyway,put into the mix that i dont do pain and i was voted the biggest cry baby in england and you can see i had a problem, the waiting is defo the worst without a doubt,hand on heart ,sorry about the pun,i found the op and the days after very very suprisingly good,no pain just a bit like having a bad dose of the flu,washed out etc,it really took me by suprise how good i felt,maybe just the relief i dont know,i know everbody is different and some have it worse than others,but honestly it aint that bad,now go sit down make yourself a nice hot drink get the cakes out, no sugar for me,..........you will be just fine
 
I did not have surgery as a child so I can't compare ... what I can truthfully say is the pain was NO where near what I expected ... as far as staying positive ,,, I viewed my AVR as life saving and something that would provide a much better quality of life as I aged ... not discounting the emotional side of all of this because it can be a roller coaster ride .... just do the best you can:thumbup:
 
Hi Allison,
Nice to meet you. I did not have OHS when I was a kid (I'm 36 yo now) but I did have a cardiac catherization when I was 7. I remember it being horrible. 3 days in the hospital and all of it a blur of being scared and drugged out. This past November I was told I most likely needed AVR so they wanted to repeat the cath. The cath was a breeze. In at 6 AM, at HOME in my bed resting by 11:30 AM. not bad at all. no pain. That's not the same as OHS obviously but what I'm trying to say is things have improved greatly. They manage things so much better now. And they manage pain so much better now.

Also, they determined that I DO need to have the surgery. The first time it was confirmed to me was when I was lying on the cath exam table, half sedated. The doc said, "there's no doubt the surgery is necessary". Even as I write that now I feel my stomach drop but it helps to remember that while I was on the sedatives on the table it was no big deal to me and keep in mind that most of the time, for our week in the hospital, we will be on sedatives. My surgery is March 1st so you and I are within days of each other. So we will get through this together and by mid-March you and I will BOTH be posting to the "post-op" board and saying how much easier it was. okay? let's put our trust in the doctors and in the meds and, more importantly, in what all the other people on this message board say, and let's know that it's going to be okay and easier than expected.
 
Allison - I'll be a week or so behind you (surgery on March 1) and I've had some of the same worries. The only surgery I ever had was a hernia repair at age 20, and I'm now 63 -- so that's a distant memory. I have my moments of anxiety, but I try to concentrate on how much my world has "shrunk" in the last year or so, and how much better it will be after the surgery. I look forward to getting to the other side of that mountain, recovering and getting better instead of worse.
 
I had a mini-thoracotomy and not a sternotomy and had very little pain after surgery. Mostly I felt sore. I felt no pain when the chest tube was removed or any of the other things that were attached to me. This surgery is sure not a romp in the park, but pain is about last on my list. If you are in pain in the hospital ask for something! There really is no need to be in bad pain and it hinders healing.
 
Most OHS patients report various degrees of Very Bearable Discomfort as opposed to PAIN following surgery.

Some do get Muscle Pain in their Back, Neck, or Shoulders from the way your body is positioned during surgery. The BEST Solution for such Muscle Pain is MASSAGE. It is FASTER and BETTER than any Pain Medication at relieving Muscle Pain.

'AL Capshaw'
 
Welcome, Allison!
I'm 7 days post op. While, uncomfortable, it's not too bad. You may have moments of pain or you may not. I struggled more with nausea and some occassional intense aching, which they were able to treat in hospital as soon as I told them about it. I never vomitted from the nausea. I didin't sit around and suffer. Was uncomfortable for less than an hour at a time. You'll be fine. Just don't let you pain meds wear off the first few days. Breathing exercise is much easier if you are on the pain meds if you need them.

I remember all the tubes and wires being removed. None of them "hurt," though I imagined they would before the surgery. Some felt weird. Some where totally painless. The intubation tube was more uncomfortable when in place, but it didn't really hurt when removed. You may have no recall of that tube at all as it comes out early after surgery.

One nurse explained to me that younger patients experience more pain than older patients because nerve receptors are younger/in better shape. What you experienced as a child is probably much more intense than what you will experience next time.

Good luck and hugs!
 
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I can honestly say that it was at times a "discomfort" as Al put it and that was VERY short lived as the mind does wonders and as I was told THERE IS NO NEED TO BE IN PAIN with the drugs administered and the care given the two go hand in hand for pain management ,,,,if something is hurting SPEAK UP they really do listen
 
Allison,
I had open-heart surgery as a little kid (coarctation repair-the same as you) and as an adult (aortic valve replacement) and I can say the pain and discomfort were much easier as an adult. It was scary as a kid, not knowing what they were doing and not knowing how to ask questions. You will have more control and understanding of the situation as an adult and better able to understand what is happening and how to request pain relief as needed. Like others have said, it will feel more like a bad bout of the flu. You will feel sore and run down at first but generally every day will be a little better.

I agree with the suggestion for relaxation exercises. They help! Find a method that calms your mind, something like deep breathing or visualization exercises. Think of a positive outcome, find some positive affirmations about how good your life will be after surgery, and repeat them daily prior to your surgery date.

John
 
Allison, I am going to sound like an echo after what the others have said to you. The days after surgery were sometimes uncomfortable but the staff at Oklahoma Heart managed the pain very well. My business partner suffered a badly broken collar bone some time before my AVR. He is a pretty macho type guy but he needed narcotics for a couple of weeks until the pain was manageable. I on the other hand have never been much of a jock and lean much more toward geek but I stopped taking the narcotics on day 4 after surgery and switched to Tylenol. When the tubes were removed it was uncomfortable but not painful. The single worse pain I experience during the five days in the hospital happened after I started eating on Day 3 and experienced an awful build up of gas the following night. When my business partner visited me on day 4, he was astonished that I wasn't laying in bed clutching my chest or zonked out on medication; actually, I was walking when he arrived. He was quick to point out that four days after the collar bone incident he didn't want to move even while taking the narcotics.

If you are really worried about this, call your surgeon's office and talk about pain management and what you can expect them to do to keep you comfortable. It isn't going to be as bad as you imagine.

Larry
 
+1 to what everybody's said, and some more info (tho' no childhood OHS):

Pain control in hospitals these days is a @#$%& MIRACLE compared to only a decade or two ago. I recently lost a sister to "cancer of the everything", and her pain was controlled so well (in the hospital and later at home) that she recommended her drugs to me and a few others. So you're allowed to worry about having major surgery, but worrying about the pain is just a waste of time. In addition, many of us actually had shockingly low levels of pain. I was shocked, for one.

There's another factor that gives you a huge advantage this time from when you were a child: You are an adult, with a good understanding of what's happening, with a professional relationship with your care providers (like, you chose them and hired them to do this work for YOU), with a lot of control over what happens (including the pain-killers).

Years ago, I had an experience that convinced me that the kind of understanding and control that's been added to your situation since you were a child is POWERFUL like MAGIC, and I've seen it proved several times since! The first time, I was flying out of Toronto, maybe to Boston. I think it was soon after Christmas holidays. It became obvious before takeoff that most of my fellow passengers were returning home (not to Boston, my guess was Portugal) after visiting family in Toronto. Most of them spoke no English and no French. The nice folks from Air Canada explained all the procedures to us in both of Canada's official languages, and these folks basically heard "Blah, Blah, Blah".

As luck would have it, we hit a bunch of turbulence, and the announcements came on the PA to explain it, in English and French, NONE of which most of these nice folks understood a word of! None of the flight attendants seemed to speak Portuguese, and precious few of this group of passengers spoke French or English. To the people who understood the announcements, this was a temporary problem, well explained by confident-sounding and courteous professionals; to the people who understood little or nothing, it was bewildering, while we were all being tossed around in a big aluminum tube WAY up in the air.

The outcome was amazing to me at the time: Essentially NOBODY who understood the announcements got sick, and EVERYBODY who DIDN'T understand them, hurled into the white bags (or somewhere)! Just being in communication with the staff in a professional way, like grownups, saved "us" from tossing our cookies. Because we were being treated like grownups (and people who couldn't understand the announcements couldn't be), the same turbulence was a nuisance, but not a terror. (I've since seen the same effect on my sailboat, where the people who understood the situation didn't get sick and the young kids and the total landlubbers were quicker to get sick.)

In addition to the advances in techniques and equipment and drugs since 1972, you'll have the benefit of entering this surgery as a grown-up, with some control over your situation. If you want to be knocked out a lot, and/or to get the anti-anxiety drugs that also make you forget the surgical experience, just tell that to YOUR anesthesiologist. (I didn't want that, and I explained that to mine, but that's me and you're you!) If you have pain, or nausea, or whatever, just tell YOUR staff, and they'll do something about it. And unlike you as a kid, you can go into this whole thing with 100% confidence that all the people around you will be working for you -- not just trying to fix your heart even if it hurts like Hell, but responding to you so you're not in pain.

It's still not a picnic, and "bumps" on the road do happen, but nobody remembers the surgery, and the post-op recovery is mostly a series of improvements. Most of us were walking by a day or two post-op, which is a miracle, given how invasive the surgery is.

Just one more thing: When you're anticipating these things, your mind is free to wander and drive you nuts. When you're actually in recovery, you're THERE! It is what it is, and the only choices are to cope with it or. . .? You've probably encounters some crises in your life that were actually tragic (unlike this one), and I bet you got through it better than you would have dreamed in advance. That's what people usually do when faced with an actual crisis. And when you're actually post-op, you'll be surrounded by people taking care of you and giving you stuff and listening to your concerns. I don't know about you, but that doesn't happen to ME all the time! ;)
 
Hi Allison, It's normal to be worried about pain after this surgery, but I can tell you that my experience with AVR in 2009 was a much less painful experience than the several surgeries I had previously. While I never had heart surgery as a child, I did have a spinal fusion at age 12, followed by removal of an ovarian cyst at 17 and two C sections at 30 and 32. My AVR was the most pain controlled experience I had up to that time. I was constantly asked where my pain level was on a scale of 1-10, and the morphine drip during the first day or two, was more than enough to control any major pain during that period of time. I remember pain medication being withheld during recovery from my earlier surgeries, and much greater discomfort immediately after those surgeries. The spinal fusion was especially difficult and I don't ever remember being consulted on how I actually felt or asked how much pain I was experiencing. I think it was common practice in those days to never ask children how they felt about anything that was happening to them and that the staff already knew what you were feeling. In fact, in preparation for that surgery, I was put in a body cast for several months BEFORE the surgery and wasn't offered any medication on the first day--probably because I hadn't actually had any surgery yet! I remember that as the worst pain I ever experienced! I will tell you that as also mentioned by another member, the worst pain I DID experience after my AVR surgery was neck and back discomfort and I agree that massage is the best remedy for this pain. Do some homework before your surgery and find out if your hospital has a massage therapist available, if not, arrange ahead of time for a massage therapist to come into the hospital if it becomes necessary. The massage will work wonders and is 1000% better than any medication for that discomfort. Good luck and be sure to check in with us on the other side of the mountain. Jane
 
Both times at Mass General, my nurses kept saying they consider pain control as important as blood pressure and temperature etc They kept me comfortable both times and pain meds did the trick fine. Of course, there was a lot of tenderness and aches and general soreness but, for me, the only severe pain I suffered was removal of my drainage tubes my first surgery. I tell you only because you asked for true stories and my tube removals hurt a lot but just for a short time. The nurse saw I had a lot of pain and immediately gave me morphine which allieviated it quickly.
(I had three drainage tubes my first surgeries and four the second OHS. How did I get so lucky? :) )

My second OHS four years later at the same hospital with some of the same nurses and the same surgeon, I was asked what was the worst thing I remember about my last experience with OHS and I was very clear in speaking about the tube removal. They looked seriously at me and said 'that will not happen to you again' and they were wonderful. The second time, I was well medicated prior to the drainage tube removal and it was a whole different experience.

Speak up. If that is what you fear, tell them. When they say they are going to remove your tubes, ask for pre-medication. I seriously doubt it would be refused.

You'll do fine. I am sure you see from this thread, everything you are feeling is very normal and we all went through the same thing. But we have no choice. We have to do this so we just get on with it and get it done. I suspect you will find many changes for the better since your last experience. I saw some changes at Mass General (one of the top five heart centers in the U.S.) in the four years between my surgeries. They keep making huge advancements.

Best Wishes.
 
honestly it was not as bad as i had anticipated. the pain is very well controlled and you should not be in terrible pain as long as you stay on top of your pain meds!

you will be surprised, i promise!
 
Allison, I remember the day they came in to pull my chest tubes, I immediately said "this is going to hurt, isn't it?", because I, too, remember it hurting from my first surgery as a teenager. They told me no, and told me to push the button on my fentenyl pain pump, which I had the WHOLE time I was in the hospital, and the waited about 10 minutes, then pulled them. It really was fine, just a tiny bit painful, nothing like I remembered from my first surgery.

I don't know if our hospitalizations from our youth were as painful as we remember them, or if they were just traumatic and somewhat painful, so we perceived as being so much worse. I do think that they are better at pain control today and I also think that patients, for the most part, are better at advocating for themselves. I really think you'll be fine.


Kim
 
I'll disagree a bit. The sternum pain isn't so bad. The muscle aches are annoying but manageable. But the largest drainage tube hurt like hell. Both surgeries.
Of course, it doesn't help that most pain meds upset my stomach and I can't take them, leaving me pretty much at the mercy of short-lived morphine for pain control, and tylenol after that, since they've bagged the darvocet.
 
Concern about post surgery pain was a major issue going into surgery, thought they can’t saw me open and it not be agony afterwards.
The presurgery info pack from the hospital referred to it as being sore or an ache, I thought this must just be spin to stop patients panicking.
I was pleasantly surprised that it wasn't much more than an ache, I was never given any prescription pain killers only OTC paracetamol for day and paracetamol&codeine for night the first few days.
Compared to the class IV heart failure before surgery I will take the post surgery any day.
 
I actually was not too worried about the pain, I was worried about the tubes. I'll tell you honestly how it went for me. I didn't have much pain, mostly just sore, especially my back. And I remember my throat was sore and I loved loved loved ice chips. Pulling out the tubes was more awkward and not painful at all, mine were pulled out the day after surgery so I still had my pain pump. If you honestly want to know what did hurt, and it didn't seem to be as much of an issue for others was the heparin shots, the needle was nothing it was the actual solution they inject you with. The only other pain shortly after operation was when they pulled out the pacer wires on the fifth day and I was only taking a bit of Vicodin and didn't for a while before they pulled them. So ask for pain meds and maybe some Xanax before those two events. If I had any other pains I was too drugged up to remember but I do remember the feeling of the tubes being taken out and it was nothing.

The absolute worst pain I experienced was the dressler's syndrome, a rare inflammation reaction that I had a few weeks after surgery, very very very few of us have dealt with dressler's so don't get all worried about it.

In the reasons I wouldn't want to go through that again pain isn't really up there on that list. I think it was being depressed afterwards and dressler's afterwards that were the worst parts, but the depression could have been taken care of if I wasn't being so stubborn.
 
I seconded the being more worried about the Tubes. The only time the PAIN was an issue for me was when I coughed. I wish I would have given up smoking alot sooner. I was VERY Stiff and the pain medicines helped that and I took it the first 3 weeks when I could to avoid pain at all. The tubes coming out didnt really hurt as it was weird. (Except Foley but that didnt really HURT coming out as it did the first few pee pees).

I would say the worst pain I felt was coughing. Other than that I was so drugged out the first day I didnt realize the pain as much.
 

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