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Anyone have this non operable problem according to doctors and tests.its called aortic stenosis
My husband and I traveled to Mayo from Louisiana for radiation treatment. It was one of the best experiences we have ever had dealing with Doctors. If something came up we were quickly sent to a specialist. All of the Doctors offices are connected by underground walkways to keep you out of the weather. We stayed in a hotel the first week while we were put on a waiting list for Hope Lodge. Hope Lodge was wonderful. They allow people to stay for free for long term radiation treatments, all you provide is your food. We stayed there for five weeks. I am so glad we were able to go to Mayo. On the 17th of this month we are going back to see if the radiation my husband received was able to get rid of a brain tumor. I would definitely recommend Mayo.
@kimf I’m glad to hear of your good experience and for sharing some of the aspects of your stay at Mayo. That is very helpful. Teresa
It has been a while since I last posted. I am now at Mayo and will be operated on by Dr Pochetino for Aotic Aneurysm and replacing aotic valve. I am in good health with no other issues. My Aneurysm is 5.7. Surgery on Feb 7. I have recd useful info from this board and hope to provide some useful info after my surgery, when I can.
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Here’s a synopsis of my experince at Mayo
ASCENDING AORTA ANEURYSM,DILATED AORTIC REGURGITATION (9MM MEDTRONIC FREE STYLE PORCINE ROOT) AND ASCENDING HEMIARCH REPLACEMENT REPLACEMENT ON FEB 7, 2017.
I checked in att 6: 30 AM and, after all the Pre Operative procedures, 7:30 or so I said my goodbyes to the family and was wheeled in.
My family informs me that somebody came out frequently to keep them informed. Following are the major steps:
At 11:30 they were informed I was on bypass machine.
At 3:30 Dr Pochetino came out and informed the family that surgery was done and all went as planned.
Around 5:30 I was moved to ICU.
Transferred to PCU the following day, Feb 8th.
My stay in PCU was comfortable and I CAN NOT say enough good abt ALL the nurses and support staff.
I was released on Feb 14– one extra day at my request.
I was walking the day after I came into PCU and really did not have much problem.
Dr Pochetino met me before discharge and told me that ,after 3 to 4 months of recovery and rehab, I will experience a significant boost in energy!
We decided to stick around at Springhill Suites (EXCELLENT) and will fly back home to Chicago jn two days.
Per the new protocol, i will be on Coumadin for six months.
All in all this was a surprisingly good experience! IT WAS A TOUGH CHOICE FOR US SINCE I WAS IN GOOD SHAPE AND HAD NO SYMPTONS.
We are glad we made the right choice and, now, I WILL NOT BE UNDER A HANGING SWORD EVERY DAY!
My final word to all with this condition is to plead with u NOT to be afraid and not ignore the advise of your Cardiologist if he/she recommends surgery.
I will check on this board every few days and will respond to every question.
GOD BLESS U ALL.
@shakuni11 I would love to know something about your visit to Mayo. One of these days I’m going to go to Mayo in Minnesota and I’d like to have a first-hand report of someone who has traveled there. Again best wishes to you tomorrow. Teresa
I hope what I posted today answers your questions. If not, let me know what else you would like me to address and I will respond asap. Good luck.
@shakuni11 Thanks for your glowing report! I’m so glad to hear that you are doing so well. You must be very relieved and happy. Take care and keep in touch with us as you begin your rehab. We are looking forward to hearing of that increased energy you will have soon! Teresa
In addition, I had yearly 2d echo with Doppler tests done almost every year since 2007. Each time the opening of my aortic valve is reduced.LAst October 2016, the measurement is already 36 cm2.
@divmercy I’ve been thinking about you and wondering if you made a decision on your heart surgery. I hope that all is going well for you. Please check in with us and let us know how you are doing. Best wishes. Teresa
Hello @onthego3 and welcome to Mayo Connect. I’m sorry to hear of your aortic valve calcification. While I do not know the specifics of your condition, I’ve been under the impression that Aortic Stenosis is treatable with surgery, however, perhaps your situation has some exceptions. Have you sought a second opinion? I don’t know what part of the country you live in, but you might seek a large university medical center for a second opinion. Please share with us some of your symptoms and the history of your valve problem. We look forward to getting to know you better and once again welcome to this patient-oriented website!
Hello, I was diagnosed with bicuspid aortic stenosis last september. At that time my cardiologist wanted to do open heart immediately but i got another opinion from a well know university of wisconsin cardiologist. She did her own tests and said i was moderate borderline severe and am going back for another echo next month. Anyone have the surgery and what type? Also needing to decide which type of valve is daunting. Im looking for others who might offer their experience. Thank you so much
I had surgery at Mayo for Aortic Aneurism and also had my Aortic Valve replaced on Feb 7. All went well and I am back home doing good. I chose the Natural (Pig) valve because it gives more flexibility to travel and does not require Coumadin after six months. The artificial valve, while long lasting, cramps your life style, in my opinion. It is a personal decision and mainly depend on whether you are willing to accept some life style changes —go for the artificial and if you want more flexibility to travel etc—go for the natural. Good luck.
I have a similar diagnosis as you two. Aortic Stenosis, Moderate to Severe. I’m 51 years old and have a Bicuspid Aortic Valve. It was diagnosed in 2005 when I had an Aortic Aneurysm. The Aneurysm surgery was all that was fixed at that time. Essentially the Doctors indicated replacing the valve was too risky making the procedure too long and risking paralysis and other life debilitating risks. The Head Surgeon, Was Dr. Safi, Second was Dr. Estrada. Surgery was performed at Memorial Herman in Houston Texas. Dr. Safi was 70 yrs. old then, he is probably retired by now.
I was in the hospital for 21 days before being suitable for release. Another Doctor on the panel was Dr. Perot. He was at the time heading up the Robotic Surgery program it Memorial Herman. He advised me to not get in a hurry to replace the valve as the industry was moving towards valves that could be inserted like a stint.
Fast forward to 2017, I see my Cardiologist every year and the valve performance seems to be the same(moderate to severe). I take my BP meds and keep the pressure under control.
If you can wait it out and do the stint type replacement, I would suggest that. I’ve had two chest openings, first in 1978 for a Coarctation of the Aorta, and then in 2005 as above to repair the Aortic Aneurysm. For me, the major issue I deal with today is the excessive scar tissue my body is creating. It , coupled with my left lungs lack of reflating from the surgeries has left me with 45% lung capacity. The scar tissue that grew between surgeries was so bad that my Aorta was grown into my esophagus. I’m losing about 1/3 of my lung capacity every 10 years doe to scar tissue growth.
Morale of the story, avoid having the chest opened. See if there are any robotic or insert valve options. Avoid the scar tissue and side effects of having your chest opened.
Best to you both.
@onthego3 We have not heard from you since your initial post some time ago. How are you? Teresa
I was diagnosed with BAV after transesophegeal echo approx 6 years ago. At the time I was having severe pain in my left neck, eye, and various places of my left head. I was also having severe night sweats and head bobbing (nodding) in time with my heart beat (De Mussett’s sign). My doctor at the time listened to my carotid bruits and became very concerned with the possibility of an aneurysm. After testing and consulting with cardiologists, they determined I needed the valve repaired. I was a paramedic at the time, and had been targeteted after 11 years for asking for a second healthcare option, and later fired for a mistake made during saving a prisoners life, which didn’t effect the call. So, I had been paying out-of-pocket to a great doctor I had come to know.
When I lost my job, I also lost my Other insurance, which starts with a K. They had not diagnosed a hugely protruding hernia for 20 years, or the other small one on the left side. They also never told me I had a heart murmur, nor mentioned that the only reason my head bobs with my heartbeat is a late sign of a serious heart defect. They also ignored the 12-lead ekg’s I had done on myself showing left ventricular hypertrophy and later acute MI suspected. Which was no surprise to me, after seeing how often they would illegally discharge patients to die at home or in the street. They were able to tell I had severely fractured some ribs on the left side, during the first day of long months on a fishing boat.
I am now about 14 years after my first real chest pains and have been easily passing out since I can remember. Once during my clinical time in the ER. I got a stitch in my head, no EKG and a hefty ER bill in the mail later. I am told by my current cardiologists, after 6 years of fighting to get anyone to recognize that I have a serious heart problem again until about two months ago. That came with many misdiagnoses from doctors (anxiety/depression, PTSD, bipolar, which led to mischaracterization of me from family and friends, divorce, and a lot of name calling. Until I started believing I was better off not becoming a burden on my kids and family and made the stupidest decision of my life. Even during, and after that for several years, I was not taken seriously, and maybe less seriously for it. I couldn’t even get most of the doctors or therapists who didn’t believe me enough to listen to my heart, or carotid. I have since decided that I will fight as long as I can. I would greatly appreciate any help though. I am finally being understood somewhat now, but feel like with as many symptoms as I have, not to mention 6-7 of the signs that I can’t fake or lie about, if I was lying about any of this. My EKG’s show a variety of abnormalities every time one is done, usually some type of enlargement, st-elevation, or other ischemic changes. I had an angiogram of my eye, showing intermittent retrograde flow in the left eye vessels, indicating a problem with my heart and/or carotid(s). I also had a carotid angiogram, showing everything within normal limits.
I am fighting now just to get further testing done because I’m told that my ejection fraction isn’t bad enough (approx 62-65%), yet. I am symptomatic with every symptom listed and more, plus many of the signs, that I can’t be faking. I have been prone to passing out my entire life and that is reason enough per AHA to replace this valve before I do further damage to my heart. Why does our country’s system ignore so many signs and symptoms in the face of an irrefutable heart defect? It is incredibly frustrating, and more painful than anything I’ve ever dealt with.
Hello and Welcome to Mayo Clinic Connect, @srounkle. Thank you for posting to the community.
I’m sorry you have had a tough go at it lately. Keep working to get the care you need and don’t stop being an advocate for your own healthcare.
You will notice that I moved your post to a relavent conversation already taking place in the Heart and Blood Health group. I would like to introduce you to other members in this group. I think @mimi68 @lynnkay1956 and @ronbee might have some experience to add. Also, you may be interested in this discussion on the same topic on Connect – “Mild” aortic stenosis. http://mayocl.in/2gTNenS
@srounkle, would you mind sharing how you have been coping with the stress of your situation? Does the BAV cause you pain?
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