Mayo Clinic Connect
Anyone have this non operable problem according to doctors and tests.its called aortic stenosis
Liked by Teresa, Volunteer Mentor, onthego3
@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?
Liked by Kanaaz Pereira, Connect Moderator
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!
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There are certain requirements for that surgery (TAVR). You should definitely have some type of surgery.
Has anyone had TAVR to replace their aortic valve? Has anyone had this done IN FLORIDA? I need to have this ASAP & live in FL. BUT everything ive researched says i should go to Cleveland Clinic Main Campus in Ohio. Florida ratings are not that great….
Baylor Heart Hospital at Plano, TX would be my choice. Google it and read about it.
I have recently been told that my aorta is calcified. Is that the same as Aortic stenosis? And is that always a valve problem?
It is the same thing. It’s always a problem if you have it.
Hello Divmercy, My story is as follows: I was seeing a cardiologist for a long while and asked him for a catherization as i wasn”t feeling great. I didn”t want a stress test. He said i was fine but showed me a drawing with my aortic valve damaged and said “no problem”.
well, i was 73 and didn”t want problems later when my heart was damaged . I made an appointment with my Surgeon who did my open heart(double coronary bypass in 2005} surgery and he said”Frank you won”t last two or three years and it will be limited”. I want you to see Dr.. x for a second opinion. they tested me and i had a new aortic valve inserted thru my femoral artery and was home at 1pm the next day. please,if you are still in good shape have it done. they can do the aortic and mitral valve thru the artery. I hope this short story will help you make a wise decision.
Welcome to Connect. Thank you so much for sharing your story; I’m sure @divmercy will appreciate your supportive words. In fact, we’d love to hear from you, @divmercy; how are you doing? Did you have the procedure to correct aortic stenosis?
@redhawk, I’m glad you are feeling well; may I ask the reason for undergoing aortic valve replacement? Did you have any valve regurgitation or stenosis?
Here’s some information about aortic stenosis and valve problems:
There are a few discussions on Connect that you may also wish to view:
– Valve repair https://connect.mayoclinic.org/discussion/valve-repair/
– Aortic valve replacement & Ablation https://connect.mayoclinic.org/discussion/aortic-valve-replacement-ablation/
@kibwezi, has your doctor outlined what needs to be done next? Are you experiencing any symptoms?
I would not hesitate to have the surgery, especially if I qualified for the TAVR surgery. Just my opinion.
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.
If you were 80, they would probably recommend the TAVR.
@kanaazpereira Thank you for the information. I was in the emergency room with A Fib and that is when I had an x-ray and it showed the calcification. I had not been told that in the past. I have an appointment next week with the cardiologist to discuss Ablation and I plan to tell him about this new development and discuss that too. I have not had any symptoms that I’m aware of and only know this from the recent x-ray.
Thank you for sharing your history. I’d like to bring other members to join in this conversation; I think @lynnkay1956 @ronbee @dlruff @vermontrob @yoanne and Mentors @predictable @hopeful33250 might have some experience to add.
If you wish, do let us know how the appointment with your cardiologist goes.
I see that you are concerned about being told that your aorta is calcified. If you are comfortable sharing more information, what type of test determined this calcification? I ask this question because in our bodies there is an abdominal aorta (that can be calcified) as well as our aortic valve, (which can be calcified).
As @kanaazpereira asked, are you currently having any symptoms or is this just referencing a test result?
We look forward to supporting you during this time of concern.
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