Max's Journal

Marie Myers  I think the CT scan  comes later, after the echo. Having the Ct scan gives more precise data on anatomy, and mine was done closer to meeting a cardiac surgeon.

Rose Madura  I didn't know I had an aneurysm until I met with the surgeon and to be honest, I can't remember if it was before or after the CT scan 

Max Jam  My cardiologist told me it helps as prophylaxis for aortic dilatation, and could delay surgery for as for decreasing the regurgitation leading to less stress on the left ventricle. 

Richard Munson  Sorry to pick on poor cher. No more sonny. But she’s dating a 12 year old. On the bright side, i saw a recent pix of barry manilow and it gave me a fib. Poor guy wants to be 25 again. 

Sue Maize  Hi Max,
I have a bicuspid aortic valve and have a tattoo—I checked with my gp first and they said it was fine…that was 16 years ago. 😊

Richard Munson  Your only issue might be blood thinners after surgery. My tattoo guy said no. I bled a bit more than my earlier model after my last oldsmobile logo and it was a little blurry on my forearm but that was before ohs. I stopped aspirin for a week before the session.  Also being older, my skin was not as elastic. 

Rita Savelis  I'd love a tattoo as well but my cardiologist advised against it because of the anticoagulants I'm on. Ask you doctor. It should be fine.

Marie Myers  I wore a couple of those decal tattoos when I returned to work from a vacation at Bike Week Daytona once… Fooled several people… It was funny!!

Rita Savelis  Thanks Richard. I have tried some decal tattoos. And they are pretty cool as well. Though of course not as cool as a real tattoo. Take care.

Valerie Allen  Hi Max! Not sure what procedure you are looking at but many of the sternotomies are people (like me) having aortic valve replacement and aortic aneurysm repair. So it depends on procedure, and perhaps Dr in some cases.

Marie Myers  Valerie (above) is right. Some procedures need more exposure and so get a sternotomy. Some doctors don’t do the minimally invasive approach either..I had a full sternotomy for an AVR and aortic root and ascending aneurysm resection.

Sharon Behl  For what it's worth, last week my cardiologist said to me (while checking my recent sternotomy incision), "If I ever had to get heart surgery, I would totally want a sternotomy so the surgeon could see everything." But I agree, with above comments, different surgeries seem to need different approaches.

Susan Lynn  Max - I had a mini-t for my mitral valve repair. There are pluses and minuses to each method of entry including the minimally-invasive ones. The most important thing is to get a good repair.

Andrea Babcock  I am on here for my husband that needs Aortic and Mitral valve replacement, waiting for his OP date. 2 Cardiologists told him that he will need Open Heart surgery because both valves need to be replaced and possibly MAZE procedure for his Afib. We had hoped for less invasive surgery but we are told not possible. 

Allen Carkner  I believe for example the Ross procedure is usually done via full median sternotomy. At least that’s what happened with me.

Yumiko Ishida  My surgeon said minimally invasive procedures are actually more risky. They need to maneuver around a lot of obstacles, bones don’t have pain nerves but tissue between ribs have a ton, ribs are prone to cracking (osteoporosis anyone?), etc. Perhaps by the time you need a replacement, technology would have improved, but based on my research, surgeon’s experience is the key, and “mini” technology is still very new at this time. I am having a sternotomy because I need maze procedure and left atrial appendage closure along with the valve replacement.

Carolyn Stone  I had a Pro closure while they replaced my Aortic valve so the surgeon did a sternotomy. Once he went back in 11 years later he did a TAVR since he had already had a good look see and fixed what he wanted to fix previous.

Michele Miller  I found out I had bicuspid aortic valve/regurgitation in about 2005. It stayed the same for more than 15 years. I had valve replacement surgery in October. I am 54 years old. Hopefully yours will stay stable for 30+ years

Max Jam 
Thank you Michele.

is there any lifestyle modifications or tips you would recommend me? I was told to avoid strenuous exercise only.

Rose Madura  I was diagnosed at age 7 (when they knew very little about treatment) with a "leaky" heart and had surgery at age 59.  You should get annual echos and they should also watch for aneurysm because it's quite common in bicuspid valve.  I was told to not participate in competitive sports but had what I consider a normal childhood. I would need the advice.  Everyone is different so that's probably why your cardiologist said 40s, 50s or 60s.  My valve was also damaged due to rheumatic fever in the early 1960s.  Hope this helps.

J Alexander Lassally  hi - I am a mitral valve guy here ( 4 weeks ago now) - so while I am not an expert, I'd say you want to be strict on blood pressure control and utilize both ARBs (Losartan) and or a Beta Blocker as you assess and buy time.  Your cardiologist should help you there, and or primary care doc. 

These meds take time to tweak, but really do work. If I could rewind, I would have started Beta Blocker earlier just to ease pressures on my heart. 

Do take time to evaluate hospitals and surgeons. Get  second or third opinions and be purposeful about it. Don't just trust one cardiologist, and certainly not one surgeon. I certainly did not, and traveled 2,000 miles for surgery. It is worth it - when the time comes. 

I can point you to technical STS outcomes data if interested. This is something not really used / discussed by many. But highly meaningful. 

28 is young - so all my best !!! 

Brady Busch  Some of it,probably depends on,if there is stenosis involved.Sounds good for now.Max Jam,that's a cool name.

Abhishek Sharma   I was diagnosed at age 14 and surgury at 38 yrs old.  3 month ago. I had done heavy weight lifting excercise before.  Well precautions for u is to take care of High blood pressure.. 

Rita Savelis  Progression can take varying amounts of time. It could be many many years. You are young, you are being followed by a cardiologist. Your regurgitation is mild. This is all good. Take your doctor's advice and have a follow-up in one year. Please try to not worry too much about future surgery now, as you are not there. Take care. I'm sorry that you have to go through this.

Max Jam  Thank you! Brady, Abhishek, and Rita. 🙏 you guys are amazing. Its. Hard pill to swallow, to learn this diagnosis. No one in my family has had heart issues. 

Abhishek Sharma  One more thing i want to add is some people with bicuspid valve live their long and complete life without surgery. Soo hopefully u r also. Soo be positive and leave everything on god. Good luck

Jeff Williams  I was diagnosed with a BAV at 18. I had yearly echos and visits with my cardiologist. I never had any restrictions with exercise, I was doing high intensity workouts and running up until I he day before my surgery this July at 39. Everyone is different, just follow your doctor's advice. 

Marie Myers  Keep monitoring your blood pressure also, because high pressures can encourage aneurysm formation. I found out about my bicuspid valve in my 20’s, and didn’t have surgery until age 63. Everyone is different, so keep up with your cardiology/ internal medicine visits. I never limited my activities, and played tennis, went horseback riding, and worked full time in a stressful job. Hopefully,  you will never need surgery!

Yumiko Ishida  My mitral valve stenosis diagnosis was at age 23, though I probably had it from a much younger age. I am 54 now and scheduled for a replacement in 2.5 weeks. I am not familiar with your condition but, as others have already mentioned, make sure you are aware of potential related conditions and keep up with the annual check up, especially as you get older. With me the disease progression was very slow and I had no symptoms other than shortness of breath when exercising, but not bad enough to prevent me from exercising. The left atrium stretched over time, though, so now my bigger challenge is the enlarged atrium, which is not fixable. My surgery will include procedures to mitigate the effects of the enlarged atrium. Just be conscious of your nutrition, sleep, and exercise, like everybody else, with or without heart disease. When the time comes, you need to be fit to get through the surgery!

Max Jam  Thank you Yamiko. Yeah i believe the progression from the bicuspids are different according to the recent posts in this forum.
🙏 in your operating, heal quick ! 

Kathy Ozio  This post reminded me of when I found out I had to have surgery (MVR). I remember when I found out in my late 20s/early 30s I had MVP and I asked the doc, worst case scenario down the road."Repair or replacement" and I thought maybe in my 70s. Haha! 51 years old, but it all came out well and feeling great now. You are aware and will monitor and found this site, so you are way ahead already!