Joyce Wells - Heart Valve Journal

My Journal

819 days ago

It has been 8 months since I had mitral valve repair - minimally invasive robotic assisted. I have a question to the group. To those of you that have had ...Read more

It has been 8 months since I had mitral valve repair - minimally invasive robotic assisted. I have a question to the group. To those of you that have had the same, what was your experience with pain and discomfort?

Susan Lynn Joyce - I had minimally-invasive mitral valve repair and had absolutely no pain in the hospital. Ho... Read more

Susan Lynn Joyce - I had minimally-invasive mitral valve repair and had absolutely no pain in the hospital. However, I had the nerves in my chest frozen during the procedure. In the year that followed, I had numbness, pins and needles, and occasionally sharp pain as the nerves were regenerating. I was honestly surprised how long it lasted, but I would choose the same procedure, again, if I had to do it all over. Hope you're OK. Eight months is still considered recovery - most docs will say that it takes a full year. Please keep us posted. Good luck!

Joyce Wells Thanks Susan. I too had my nerves frozen, but did have pain in the hospital and severe pain afterwar ... Read more

Joyce Wells Thanks Susan. I too had my nerves frozen, but did have pain in the hospital and severe pain afterwards. I was told I was the 1% where the freezing didn't work and actually made it worse. I have had some form of pain and discomfort everyday for 8 months. Not enough to stop me from golfing, tennis or gardening. But enough to use lidocaine and Tylenol for treatment. I am no longer numb but still have burning, swelling and pain. I have areas that I can't touch without pain that are not the incision. So I am going to see a neurologist just to get a diagnosis. If it is..."just takes time " - so be it. But I have had to cancel two mammography appointments, because I can't get squished.

Susan Lynn Joyce - I am so sorry you're enduring such persistent pain. Please let us know the outcome of your... Read more

Susan Lynn Joyce - I am so sorry you're enduring such persistent pain. Please let us know the outcome of your appointment. I hope the neurologist can provide some answers and treatment.

Joyce Wellsposted an update

993 days ago

Susan Lynn reacted to this

Long post, but would appreciate any advice.

On February 8th, I had minimally invasive robotic assisted mitral valve repair.

All went well with ...Read more

Long post, but would appreciate any advice.

On February 8th, I had minimally invasive robotic assisted mitral valve repair.

All went well with my heart surgery, replaced two chords on posterior leaflet and did an annuloplasty...and did it with cryoanalegia aka ice block. My heart recovery is awesome...Breathing is great, stamina wonderful.

However, I have had a very bad result with my surgical site. Massive chest pain across my entire chest after surgery. Half of that went away in one day..my right chest is still very skin sensitive (like a bad sunburn that won't heal). Anything that touches it hurts. I also have internal aches under my right arm, the adjacent back (why back I don't know), tricep and upper chest. Feels like an open incision that I keep pulling apart. Also "electric shocks" in multiple areas of my chest.

Before surgery, I was made aware that 1% of these surgeries with the "ice block" can actually make the nerves more sensitive...and won't go away for months. According to my surgeon...i am probably one of those. The problem is that I am super scared and anxious that it is not going to go away. Before the surgery I was extremely active and want to get back to my lifestyle ASAP. However, because this condition doesn't happen that often, I am having no success in finding someone to help me.
I am using Lidocaine patches and creams. Tylenol and Advil.

I am so disappointed in the aftercare. I hate the answer, "everyone heals differently. It just takes time."
In this area there are no cardiac rehabs available until May 5th...so, I am doing it on my own.

Anyone else have this issue? Or can help me find resources? I have googled extensively and nothing. Drs say wait until 3 months. I am worried something else is wrong. Any advice?

Susan Lynn Joyce -I had minimally invasive mitral valve surgery and chords repaired. I also had nerves frozen... Read more

Susan Lynn Joyce -I had minimally invasive mitral valve surgery and chords repaired. I also had nerves frozen and experienced numbness, pins and needles, and the occasional electric shock pain on my side and just under my right shoulder blade. Even though I found it tolerable and didn't need meds, it took a year for the sensations to dissipate. It sounds like you're in some pretty significant pain, so I suggest you be persistent with your doctor. However, if it is your nerves regenerating, you can only treat the symptoms, there's no way to speed up the process. Please keep us posted on your progress. All the best to you!

Joyce Wells Thanks Susan Lynn. This was very helpful. I go between its my nerves regenerating and "is something ... Read more

Joyce Wells Thanks Susan Lynn. This was very helpful. I go between its my nerves regenerating and "is something wrong". Its the sensitivity of the feeling of a sunburn on your chest then putting on a lacy bra that is painful/uncomfortable. not wanting to move my arm limits what I can do. It is only 2 months, but when I look at the success stories and people don't feel any pain, or are golfing after 2 weeks...I wanted that. I went in very strong and healthy. I feel strong, great breath and stamina...but not wanting to move because of the pain..is very annoying.

thanks again

Patsy Stewart Joyce, I’m sorry you are experiencing such horrific pain. Have they tried giving you a prescription ... Read more

Patsy Stewart Joyce, I’m sorry you are experiencing such horrific pain. Have they tried giving you a prescription for nerve pain? I know gabapentin is one that is prescribed frequently. Since I’m allergic to a lot of medications and have peripheral neuropathy in my feet and legs, my GP recently told me to get a bottle of alpha lipoic acid. I was supposed to take 600mg twice a day, but it was bothering my stomach. I take 1 pill a day. My legs seem to be a bit better. Make sure you ok this with your doctor before trying it. If the pain persists and you can’t get any relief, make a trip to the ER. As for trying to wear bras….ditch them! I wear a lot of camisoles under my blouses and nobody is the wiser. Yay for you doing rehab on your own! Walking is your best friend. Sit and stands w/o using your hands to push off helps build lower body strength. Standing near a table where you can rest your hand if need to. Hold your arms out in front of you and balance on 1 leg for 20 seconds. This will help you maintain your balance. You’ll have to ask your doctor when you can slowly start with arm weights. I hope some of this will help you since you can’t go in to cardiac rehab. Take care of YOU! I pray you begin to feel better soon. ~❤️