Michael's Journal

Marie Myers  I am sorry you were given this report with no opportunity for some information along with it!  I am assuming you have had no inkling of this diagnosis?

Melinda Donahue  That is terrible and unprofessional!  Did you speak to someone regarding a treatment plan and which doctor to see that can help you. I don’t understand how this happens. Gosh - grateful for AI 

Valerie Allen  If it were me, I would be on the phone with the surgeon’s office and not wait until tomorrow. Being still in the area it should be easier. I am not familiar with that diagnosis. 😕

Fidel Martínez Ruiz  I cannot understand to deliver a pathology report without a cute explanation. Unfortunately, I see It happens in many places. I understand that you are feeling now annoyed.

Jeffrey Sweatlock  What a way to receive some serious news. You definitely need to followup with your team. Top questions would be is it inherited ( dominant or recessive), and is it treatable and how (medication or gene therapy).  You may require family genetic testing to identify other members.

 A quick look in Pub Med (by the NIH/National Library of Medicine) indicates a possible genetic/ inherited pattern plus an association with a separate but also inherited disease with a similar underlying mechanism called Hypertrophic Cardiomyopathy - HCM.  That often shows up in families with sudden death in those who are relatively young. Does your family have that kind of history?  

Good luck in getting the answers you need

Michael Smith  Got to talk with a cardiologist prior to heading home on Friday.  Helped to get an explanation, but now there is a new disease to have to address.  I hope that early diagnosis will be beneficial.  Thx to all!

Jeffrey Sweatlock  Glad you were able to get some answers and a plan. We’ll be thinking of you. Please keep us up to date on how you are doing and how your treatments go. Best wishes to you Michael

Melinda Donahue  Michael thinking of you as well and wishing you the best treatment and recovery on your journey back to great health. 

Corey Potter  Michael, great to see your post.  I was at CC yesterday for a couple of non-related appointments on incidental findings during pre-surgery testing.  I had some pain in the same place and it resolved pretty quickly.  Getting out of there and walking will help.  Great to see you are on the other side of this and getting out of there today.  Best wishes on your recovery and safe travels on your way home.  

Rose Madura  Michael, congratulations on a successful surgery.  I remember that pain as well and I was told it was from the way you were positioned during surgery.  Applying heat seemed to help. Hope it gets better soon for you. 

Marie Myers  I wonder if a muscle relaxant would help? I thought the shoulder and upper back pain bothered me more than anything else.

Pamela Gregory  Congratulations on a successful surgery! Yes, I remember the back and shoulder pain being the worst thing initially. Heat sounds like it could be beneficial. I think it got better after a few days.

John Cook  My pain management was a heating pad, a maximum dose of Tylenol (for the first 2 months), & one 250mg naproxen twice a day.

the naproxen was prescribed for anti-inflammatory reasons, but it’s also a pain reliever.

Chris Germano  also have someone give you a deep tissue massage on your back... My wife massaged my back and it really helped. I had a miniAVR and  was told its from having the chest bones and mussels stretched open for the 4 hours of the surgery. Its 6 weeks post surgery for me and there still is a bit of soreness in the back.

Richard Munson  You would think they would all be on the same page, but but both doctors and hospitals tend to push what they are good at. There is a business aspect to it. 

Fidel Martínez Ruiz  Hey Michael. Exactly the same happened to me. The surgeon told me that once opened, and only then, she would make the right decision, repair or replace. In my case was replacement in open surgery because the valve was very calcified and with a broken chord and I think the result has been succesful . I think that any both options can be good but both,  specially minimally invasive surgery, requires surgeons with much  experience. I understand the opinion of your Kansas surgeon, perhaps he is very used to do the open procedure. For me open surgery has been OK. Any question that you have, I'll try to answer. 🤝

Susan Lynn  Michael - I had a Barlow's valve and a minimally-invasive repair.   My cardiologist told me after my TEE that a repair was likely and my surgeon didn't even have me choose a replacement valve before my procedure.  More than 90% of mitral valves are repaired by experienced surgeons, so I'm not sure how much of a 'prediction' it was, but I was certainly relieved.   You definitely want to do your research and ask your prospective surgeons what their successful repair rates are.   Best of luck to you. 

Douglas Merten  Sounds like you’re doing the right thing getting all the information and opinions you can get. I had my mitral valve with Barlow’s repaired earlier this year.  Mine was a fairly complex surgery.  My surgeon was confident, like 99%, that he could repair via minimally invasive.  On the consent, it did say repair or replace and I did have to pick out the valve in case replacement was required.  The robotic approaches are intriguing because of how they do the repair. In my case, the mitral center of excellent in my area performed the minimally invasive approach.  

Christopher T  Dr Gillinov Cleveland clinic. Mitral repair is his speciality he can do minimal invasive or sternotomy. I am two weeks out from my repair as of today. Also dr Adam’s mount sani in NY is good

Robert Miller  For sure get a second opinion. Check if it is the surgeon you talk to that is doing the procedure (he might just supervise it). There are a few disadvantages going with minimal invasive but that's the way I would go if that is an option for you.
Not trying to get your hopes up but if the surgeon says there is a 50/50 percent chance for repair, it's probably going to be a repair. I got a pretty low chance for repair but both time they repaired it.
I heard of Gertisch a lot. Also check Gillinov. Gillinov is cocky but he supposedly is very good with minimal invasive surgery. Again, make sure he is doing the surgery. 

Susan Lynn  Michael- Over 90% of mitral valves are repaired by experienced surgeons.   Usually, calcified valves make repairs more difficult and sometimes necessitate replacement.   You've got a good chance for a repair.   Remember,  multiple opinions are always a good idea. Do your research and pick the right team and facility.  Good luck! 

Richard Munson  Mine was repaired via minimally invasive and the leaflets were reattached with gortex . My surgeons claim to fame was minimally invasive. Believe me when i say this but they push what they are good at. I’m in sales, i do the same thing. There is a certain amount of marketing in heart surgery. Some advertise right on this site. I assume the flap itself was ok and not beyond help. I did however have to sign a waiver that once inside if they discovered they needed to peel me like a banana i was ok with it. I believe they did fix one leaflet, maybe 2. We decided jointly to operate once it progressed beyond moderate. Even then , i had to push a little to get the ball rolling. Finally i had enough come back in 6 months answers. That was 4 years ago and i am glad i did it before i showed signs or symptoms. Did not visit this site prior to my surgery so i lucked out. My cardiologist however gave me sage advice and my eventual surgeon was his buddy. Plus it was right in the middle of covid. Masks all around and no visitors period. I could not tell you what my surgeon looks like except from a picture. 

Fidel Martínez Ruiz  I´have got the same dilemma 1 and half years ago, when I had my mitral valve replaced. Now I am doing well with the valve and making the same level of exercise than before hiking mountains once a week a gym 3 days a week. My first diagnosis was endocarditis that healed but left as sequelae a myxomatous, calcified and prolapsed valve. The team of physicians after seing ECG and Eco propose me open surgery. They told me that if could, the´d try to repair the valve, but they couldn´t know about it until watch the valve directly in the operating theatre. After surgery, in the first medical visit I was told they found the valve very calcified , with vegetations and a broken cord and decided at that very moment to replace the valve. In the beginning this disappointed me but now I think that is better a good replacement than a bad repair. And here I am to tell my experience. The important is to be lucky in choosing a good surgeons team and have confidence in them . Best wishes for all.