I have had 2 valve replacements within the past 3 years I just want to know if someone is having the same problems as me

[angiedavis]

Hello, I am Angie and I am 49. I had my first valve replacement 3 years ago with a tissue valve and my body rejected it. I got the mechanical valve in October 2019 and I am looking to see if anyone has had two valve replacements that can tell me if I should still be in this much pain after all this time. They told me it is because of scare tissue. I told them I would rather hear from patients rather than doctors. Someone please help me. It hurts just to lift my arm to look at my watch and to roll over in bed, I feel the wires holding my sternum together poking me all of the time. I also have a lump from the heart cath that is causing me pain. I had it done at the Cleveland Clinic and they just kind of ditch you when they are done with you to go to your "home" hospital. I hope someone can give me a timeline of when I can get back to my normal self.

 

[Warrick]

Hi Angie, Iv only had AVR once so far but there are muliple members on here that have had 2-3+ surgeries.
I had my sternum wires out after 11 months as they caused alot of pain and stuck up, it was a routine procedure which I would recommend to anyone with wire issues, so hope yours can be resolved.

Once your sternum heals the wires are not doing anything and are unnecessary.

 

[angiedavis]

Thank you! I appreciate that. The first time it was easy and I felt amazing after 3-4 weeks but this time the wires and my left arm and at the site of my heart cath in my groin. I’ve been told it could take a year to feel better. As far as my breathing...well, let’s just say I feel as though I took my car to a mechanic and my car is still doing exactly what it was before and worse.

 

[almost_hectic]

Have you gone for cardiac rehab? Those folks hear all the complaints and can often help greatly getting you back on track to feeling better.

 

[angiedavis]

Have you gone for cardiac rehab? Those folks hear all the complaints and can often help greatly getting you back on track to feeling better.

Yes I finished Cardiac Rehab in June. I just got the notice (ironically) in the mail today that they have been paid by insurance. They were great people and very attentive. They sent me to ER once but once there, ER just said you’re fine and sent me on my way

 

[LoveMyBraveHeart]

Yes I finished Cardiac Rehab in June. I just got the notice (ironically) in the mail today that they have been paid by insurance. They were great people and very attentive. They sent me to ER once but once there, ER just said you’re fine and sent me on my way

Hi Angie,

I'm sorry to hear you're still struggling with some pain. My husband has had a few OHS over the span of 10 months, so I'm not sure If his scar tissue was as developed as yours at the time of his last surgery, but his recovery did take quite a bit longer the second/third time. The surgeons place you in some less than anatomically sound positions when you are on the operating table..his surgeon actually told Mathias that it's not uncommon to be released from the hospital with hairline fractures on your ribs. He still, very occasionally, gets a spasm on his left side under his shoulder blade that really lights him up and makes him weak at the knees, and not in the romantic way! He was having them once a day for the first few weeks in recovery, then the time between episodes lengthened. He has them maybe once every 6-8 weeks now and he is just shy of one year out from his last surgery. They are much less intense now too, and he has a stretch that seems to help if he catches them in time.

As far as the line they put in your inguinal area, they knicked a nerve on Mathias, so it was extremely painful for him to even walk for 2 weeks or so after his surgery. It didnt really flare up until about 10 days after when we were home and the nerve endings started their healing process. Gabapentin worked well for him to stop the nerve pain, I'm not sure if that's the type of pain your are experiencing or not. He also has a high tolerance to narcotic pain medication because of previous surgeries hes had, so pain meds didnt help much, if at all, during his recovery. We relied on muscle relaxers instead, which worked great in conjunction with tylenol for relaxing the spot in his back.

Other things that helped were lidocaine (free from menthol!) Patches and/or cream, ice packs, heating pads, yoga, and a good old massage.

I hope it starts to get better for you or that you can find some answers. I also second Warricks talk of removing sternal wires. Mathias hasnt had it done because they arent cause much of an issue, but it had been brought up as kind of the first thing to approach when dealing with sternal or insicional pain.

All the best to you!
Jill

 

[mecretired]

I had ohs 10 yrs ago and have a mechanical aortic valve. Three years ago I had to have the upper lobe of my right lung removed. I got a copy of the surgical report that showed my lung was stuck to my chest wall by scar tissue. The lung surgery was extremely painful for weeks after and I think a lot of that was due to scar tissue. So hoping you find some answers and some relief.

 

[Bryan B]

I've had 2 valve surgeries (2004 & 2011), and ironically I had the same issues but in reverse. I had chronic issues with my sternum after my first surgery and my 2nd surgery was a breeze (relatively speaking). Like Warrick I finally had my wires removed about 8 months after my first surgery and the relief was immediate. They can't remove them much earlier than that because they have to make sure your sternum has fully healed first. I think 6 months is the minimum before they will consider removing them. I had the procedure done on an outpatient basis, and besides a few days of being sore from the procedure I got immediate relief from the constant pain I was having before the procedure. After my 2nd surgery (valve & aortic aneurysm repair) I have had no sternum complications and still have my wires.

 

[Emmapenny]

He still, very occasionally, gets a spasm on his left side under his shoulder blade that really lights him up and makes him weak at the knees,

Hi

Appreciate you wrote this some time ago now but it sounds very similar to what my son experiences and I was wondering if he still has these episodes or if you ever worked out what it was.
Many thanks
Emma

 

[carolinemc]

Hello, I am Angie and I am 49. I had my first valve replacement 3 years ago with a tissue valve and my body rejected it. I got the mechanical valve in October 2019 and I am looking to see if anyone has had two valve replacements that can tell me if I should still be in this much pain after all this time. They told me it is because of scare tissue. I told them I would rather hear from patients rather than doctors. Someone please help me. It hurts just to lift my arm to look at my watch and to roll over in bed, I feel the wires holding my sternum together poking me all of the time. I also have a lump from the heart cath that is causing me pain. I had it done at the Cleveland Clinic and they just kind of ditch you when they are done with you to go to your "home" hospital. I hope someone can give me a timeline of when I can get back to my normal self.

But doctors know from the patients that have had this experience. Talk to your Cardio. And report that pain, for they may have to remove them. It can be done.

 

[uncle_boko]

My experience of the Cleveland in London UK is that the best person to speak to (and if I'm not mistaken free!!!) is the Cardiac Nurse Specialist, who should be able to give good advice.

 

[LoveMyBraveHeart]

Hi

Appreciate you wrote this some time ago now but it sounds very similar to what my son experiences and I was wondering if he still has these episodes or if you ever worked out what it was.
Many thanks
Emma

Hi Emma,

Thanks for your reply--something told me to log in today (I've been neglecting to for ages!), and I'm glad I did!

He does still have these episodes from time to time, though much less frequently, maybe about twice a year? He's worked with a chiropractor, massage therapist, and physical therapist to determine that when he had his emergency surgery (the one they had to do to evacuate a blood clot that was crushing his heart), 2 ribs were broken and never healed correctly. So, when he gets these spasms, it's his ribs being displaced causing a severe cramp! Sometimes, he tells me it feels like it's poking his lung. He has been able to work up the muscles in his back to keep it in place, but it does slip out once in a while...he can usually feel an episode coming on a few days in advance, so he does different exercises and stretches to keep it away. For episodes that he can't right himself, he goes to the chiropractor for an adjustment. Most episodes he is able to stretch appropriately and the spasm stops. Also, bear with me because it's an odd cure, at the onset of the spasm/cramp, he drinks a big glug of pickle juice and it lessens the pain almost immediately. I've heard the same about mustard, but we always have pickles around, so that's what we use. It works great for my cramps as well! I know it sounds funny, but if your son can stomach pickle juice or likes pickles, it might be worth a shot the next time his shoulder/back gives him trouble.

All the best to you! Thanks for the tag and for getting me to log back in, I've missed these people! They helped us through so much.

 

[Emmapenny]

Hi Emma,

Thanks for your reply--something told me to log in today (I've been neglecting to for ages!), and I'm glad I did!

He does still have these episodes from time to time, though much less frequently, maybe about twice a year? He's worked with a chiropractor, massage therapist, and physical therapist to determine that when he had his emergency surgery (the one they had to do to evacuate a blood clot that was crushing his heart), 2 ribs were broken and never healed correctly. So, when he gets these spasms, it's his ribs being displaced causing a severe cramp! Sometimes, he tells me it feels like it's poking his lung. He has been able to work up the muscles in his back to keep it in place, but it does slip out once in a while...he can usually feel an episode coming on a few days in advance, so he does different exercises and stretches to keep it away. For episodes that he can't right himself, he goes to the chiropractor for an adjustment. Most episodes he is able to stretch appropriately and the spasm stops. Also, bear with me because it's an odd cure, at the onset of the spasm/cramp, he drinks a big glug of pickle juice and it lessens the pain almost immediately. I've heard the same about mustard, but we always have pickles around, so that's what we use. It works great for my cramps as well! I know it sounds funny, but if your son can stomach pickle juice or likes pickles, it might be worth a shot the next time his shoulder/back gives him trouble.

All the best to you! Thanks for the tag and for getting me to log back in, I've missed these people! They helped us through so much.

How funny you logged on out the blue to my message! It really is a special community for support and advice.

Appreciate your response. I am going to get him a chiropractor appointment I think so they can take a look at it. It does really takes his breath away although it does seem to pass reasonably quickly.

I am not too sure I could convince him to try the pickle juice...... do you know what's in it that may be helping? He can't seem to find the right stretch for it yet but I think that is more to do with the fact the pain is so intense he can' really think straight and I don't want to be manipulating his body in case I get it wrong and do more harm than good.

My son is very tall and has done a lot of growing in the last year. I do wonder if it may be unrelated to surgery and just based on his muscles catching up with his growth spurts. But it is hard to separate at the moment as it has only happened post surgery and typically it is on his left side.

 

[LoveMyBraveHeart]

How funny you logged on out the blue to my message! It really is a special community for support and advice.

Appreciate your response. I am going to get him a chiropractor appointment I think so they can take a look at it. It does really takes his breath away although it does seem to pass reasonably quickly.

I am not too sure I could convince him to try the pickle juice...... do you know what's in it that may be helping? He can't seem to find the right stretch for it yet but I think that is more to do with the fact the pain is so intense he can' really think straight and I don't want to be manipulating his body in case I get it wrong and do more harm than good.

My son is very tall and has done a lot of growing in the last year. I do wonder if it may be unrelated to surgery and just based on his muscles catching up with his growth spurts. But it is hard to separate at the moment as it has only happened post surgery and typically it is on his left side.

I don't know what's in it that helps so quickly, I wish I did! Maybe something about electrolytes or salt? I'm not sure. I wish I knew! Mathias (my hubs) uses a door frame when he gets a spasm...he puts the corner of the jamb under his shoulder blade and presses into it. It seems to help him most of the time. It still scares me when he goes into these fits, he's gone through so much and I'm still trying to remind myself that it's been years since his whole dilemma was corrected. Maybe someday I'll find out how to not be such a worrier. If you have the secret to that, let me know.

 

[Emmapenny]

I don't know what's in it that helps so quickly, I wish I did! Maybe something about electrolytes or salt? I'm not sure. I wish I knew! Mathias (my hubs) uses a door frame when he gets a spasm...he puts the corner of the jamb under his shoulder blade and presses into it. It seems to help him most of the time. It still scares me when he goes into these fits, he's gone through so much and I'm still trying to remind myself that it's been years since his whole dilemma was corrected. Maybe someday I'll find out how to not be such a worrier. If you have the secret to that, let me know.

Working on it myself!

 

[Earthsciencerocks]

Hi Angie,

I'm sorry to hear you're still struggling with some pain. My husband has had a few OHS over the span of 10 months, so I'm not sure If his scar tissue was as developed as yours at the time of his last surgery, but his recovery did take quite a bit longer the second/third time. The surgeons place you in some less than anatomically sound positions when you are on the operating table..his surgeon actually told Mathias that it's not uncommon to be released from the hospital with hairline fractures on your ribs. He still, very occasionally, gets a spasm on his left side under his shoulder blade that really lights him up and makes him weak at the knees, and not in the romantic way! He was having them once a day for the first few weeks in recovery, then the time between episodes lengthened. He has them maybe once every 6-8 weeks now and he is just shy of one year out from his last surgery. They are much less intense now too, and he has a stretch that seems to help if he catches them in time.

As far as the line they put in your inguinal area, they knicked a nerve on Mathias, so it was extremely painful for him to even walk for 2 weeks or so after his surgery. It didnt really flare up until about 10 days after when we were home and the nerve endings started their healing process. Gabapentin worked well for him to stop the nerve pain, I'm not sure if that's the type of pain your are experiencing or not. He also has a high tolerance to narcotic pain medication because of previous surgeries hes had, so pain meds didnt help much, if at all, during his recovery. We relied on muscle relaxers instead, which worked great in conjunction with tylenol for relaxing the spot in his back.

Other things that helped were lidocaine (free from menthol!) Patches and/or cream, ice packs, heating pads, yoga, and a good old massage.

I hope it starts to get better for you or that you can find some answers. I also second Warricks talk of removing sternal wires. Mathias hasnt had it done because they arent cause much of an issue, but it had been brought up as kind of the first thing to approach when dealing with sternal or insicional pain.

All the best to you!
Jill

I found out that one of my upper ribs, near my spine, was dislocated about 2 years after my second AVR. My Physical Therapist finally caught it after lots of neck and back pain issues.
He popped it back into place, and I am healed.
I pray your sternum pain is relieved!