9 years post op, bio AVR, now with mild deterioration - question for the other ladies here

[Katerina Winchowska]

I'm having a really miserable day today. I live with constant discomfort. I won't call it pain because that word must be for something really important and life threatening. A year after my op, I had what my GP diagnosed as costochondritis. It wasn't too bad, but it has got worse, soreness and aches with occasional flare-ups. I have constant tenderness around my ribcage, soreness in the sternotomy area and often swollen glands. The left side of my ribcage is raised at the sternum compared to the right. Around 18 months post-op I noticed a hard lump in my right breast and that the breast itself was smaller compared to the left. I have had three mammograms and a scan, was told by the breast clinic that the lump was "just a bit of gristle", they could find nothing wrong and I was discharged. The discrepancy in size of my breasts has increased, they are often tender; this, and the discomfort around my ribcage means I find it painful to wear a bra and even some types of clothing. I raise all this at a cardiology clinic appointments, but am told it is nothing to do with my heart. I'm not complaining. I know if I hadn't had an AVR nearly 10 years ago I probably wouldn't be here now. I certainly wouldn't be walking the dog on the South Downs enjoying the scenery. I'm 71 and looking at AVR in the next two or three years. I'm just feeling really sorry for myself at the moment. I wanted to tell someone, and to ask if any other ladies here have had a similar experience.

 

[ottagal]

I am sorry to hear that you are going through this and it can be frustrating when you can't get definitive answers. However, I am glad that your mammograms ruled out breast CA. Unfortunately, I wasn't so fortunate and was diagnosed with breast CA this past year.

I dont know all your health details, but it sounds like you are taking the steps necessary to get diagnostic testing etc. I understand breasts are not symetrical in size. I am not sure of the clinical signifiance for you or your medical profession.

Are you able to get a second opinion? What about seeing a specialist who deals with costrochondritis?

Take a deep breath and know it OK to feel sorry for yourself. We all have good days and bad days. I worry when the bad days outweigh the good.

Hopefully you are able to connect with friends etc. (even virtually) to get your mind off of things and a second opinion.

Wishing you better days moving forward.

 

[dornole]

I had costochondritis but only for a couple weeks, paired with a cough. I thought it hurt A LOT! I had the rib pain you describe but not the misalignment issues or breast stuff. I'm sorry you're experiencing this.

How long have you had these symptoms? Are you getting any treatment at all for the pain and inflammation from costochondritis? Screening for infection with those swollen glands? Maybe your GP should be treating you more assertively, or referring you to some kind of specialist. Perhaps you just have to wait it out or live with it, but I'd want to be darn sure they did everything they could.

 

[Paleowoman]

Hi @Katerina Winchowska - I'm seven years post AVR and I get discomfort, sometimes pain, in my sternum and rib area, just breathing a bit deeply I can feel discomfort, coughing (I have a respiratory condition) can lead to pain. My cardiologist once told me it was costochondritis. Two years ago when I had particualrly bad pain in my sternum my cardiologist referred me for an MRI of the sternum. This showed that there was an effusion and degenerative changes in my left sternoclavicular joint (top of sternum) which both a rheumatologist and pain specialist said would have been the result of heart surgery (ie when sternum/rib cage manipulated forcefully by retractor during OHS to access the heart). The place where I feel discomfort when I cough/breathe deeply did not reveal anything on MRI but I would guess that it's where the ribs attach with cartilage to the sternum. I do get discomfort in my right breast but there's no physical differences between it or the left one - I remembered just now that immediately post OHS and for quite some time after, there was a peculiar area of numbness there which I was told would have been nerve damage from surgery. I never wear a bra so don't know what that would be like.
I hope you are able to find answers. And when you have next AVR make sure your cardiac surgeon is aware of these probelms.

 

[lilyofthewest]

Katerina, I hope you're having a better day today. And I thank you for starting this thread. I never heard of costochondritis before, but it's interesting. A month or so ago I had periods of rather sharp pain in my left chest/sternum area and of course feared it was my 3 year old valve acting up. But l gradually decided it wasn't a heart issue since each time what would "cure" it was to wear a very tight sports bra. I haven't normally worn a bra since I was 18 and am now 72. My complication is that some 25 years ago I had breast cancer on that side and a tram flap reconstruction after mastectomy, so no actual breast tissue there, more like an annoying blob. Thankfully the pain just mostly went away and am again bra free. Thought maybe had bruised the site or something. But now I do wonder. Can't wait to get vaccinated and back to normal Dr. visits to get everything checked out. Thanks all for group support.

 

[CindyBain]

I have a cousin that has costochondrities, until then I had not heard of it. She also has more of the Ehlers Danlos Syndrome symptoms that I learned runs in our family from our maternal grandmothers side. I am meeting with a Mayo Clinic geneticist to see if it will affect me if and when I have more heart surgery. Good luck and I hope your pain eases soon.

 

[Katerina Winchowska]

Thank you for the sympathy, the pep tallks and the shared experiences! Generous application of ibprofen gel along the sternum and anywhere else tender over a few days has helped, as did paracetamol. I also have discomfort at the sternoclavicular joint and find v-necked or scooped garments more comfortable now. I've come to the conclusion that I have a slightly "mangled" right breast and accompanying structures due to retraction but it would be good to have that confirmed. I don't think I'm going to get that. I've been looking for an all-in-one body shaper or body suit with built in support but either they have a tight elastic band around the ribcage under the breasts or offer no support at all. I had a COVID vaccination this week, but here in the UK there's no chance of getting back to a "normal life" in the near future.

 

[Amy]

Hi Katerina,

have the pains you wrote of gone away? Or do you just get used to it? Did you ever find a nice tight-fitting body suit? I’ve been having similar pains at 4 1/2 months post op and am wondering if something like that wouldn’t be helpful... I don’t want to add paracetamol to my already long list of drugs and supplements.

 

[almost_hectic]

Thank you for the sympathy, the pep tallks and the shared experiences! Generous application of ibprofen gel along the sternum and anywhere else tender over a few days has helped, as did paracetamol. I also have discomfort at the sternoclavicular joint and find v-necked or scooped garments more comfortable now. I've come to the conclusion that I have a slightly "mangled" right breast and accompanying structures due to retraction but it would be good to have that confirmed. I don't think I'm going to get that. I've been looking for an all-in-one body shaper or body suit with built in support but either they have a tight elastic band around the ribcage under the breasts or offer no support at all. I had a COVID vaccination this week, but here in the UK there's no chance of getting back to a "normal life" in the near future.

This may not have anything to do with your heart but I would have to think it has everything to do with your heart surgery. Have you tried calling the surgeons office? I know I had read about some patients on this site who had their sternal wires removed because they gave them lots of problems after surgery. I had a lot of sternum pain after surgery and for many months that followed. None of my doctors gave me any indication why. I "think" where my sternum was cut was misaligned when it was wired back together or that its position had shifted slightly and that was the cause of all of my pain. Only occasionally do I still have any discomfort, and when I recognize it I can usually bend or stretch in such a way that I get a "pop" or "crack" sound from my chest and the pain goes away instantly. I would try and see if you can call the surgeons office, or at the very least ask you GP to order a chest X-ray as a start. The problem with X-rays is what they don't reveal. They won't show if a nerve is pinched or some other soft tissue problem, only bone. I hope you get it figured out and find comfort again. Pain is so draining on your spirit.