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blinne

Hi I am new to this forum. I am so glad I found it because I am becoming very frustrated. I am 32 years old and have a bicuspid aortic valve with regurgitation. What I am very concerned with is that I am having symptoms that the cardiologists I have seen are saying are not related to my BAV. My most significant symptom is severe weakness in my left arm. I also experience occasional chest pain and dizziness as well. I am under a lot of stress right now and have trouble controlling my stress level and anxiety. Since my arm weakness is so severe I have been referred to a neurologist even though I have had an MRI and they found nothing that could explain the weakness in my arm. The doctors still seem to think that it is not directly related to my heart. I am trying my best to figure this out myself and I have been reading about Mitral Valve Prolapse Syndrome, and it seems like one of the symptoms is arm weakness, and I have many other symptoms with that as well. I was wondering if there is anyone out there that has had any similar symptoms and experiences. The doctors here seemed so focused on my bicuspid valve since it is such an obvious problem but I know something else is wrong and I don't think it is neurological. Any help would greatly be appreciated.
 
HELLO and WELCOME Bline cant really answer your questions but
sometimes another and another opinion is a great idea if you haven't
done so i'd start that route,someone with more info will come along but
I wanted to welcome you here glad you found us,sorry for the reasons
But stick around and someone will answer more specifically on your symptoms.
 
So glad you found us!

So glad you found us!

Welcome blinne!:) I can't help you either with your symptoms but I did want to welcome you and tell you that you have found a great group of people here who are extremely caring, supportive and very knowledgeable. I found this forum just 10 days before my husband's OHS and have learned so much and made lots of friends in just this short time. I can't imagine going through his surgery and his recovery now without all my new friends. I hope you are not frustrated for too long. Keep asking questions and looking for answers. You know your own body better than anyone, doctors included. I agree with Deb that you should see another cardio for a second opinion. Good luck and please keep us posted!

Nadine:)
 
Thanks for your replies, I haven't been diagnosed with mitral valve prolapse. It is something I came across and it seemed to match some of my symptoms. I really have no idea what the cause could be other than being told that my bicuspid valve wouldn't cause these symptoms. I also really don't think it is neurological, along with weakness in my left arm there is quite a bit of swelling. This is all very confusing for me and it just seems so difficult to get answers. I am definitely going to get a second opinion and maybe even another echocardiogram.
 
Hello and welcome. I dont know about your symptoms...but were around the same age, and i totally understand your anxiety. This site and the wonderful people on it do help alot. How did you find out about your condition?
 
I feel I should have found out about my bicuspid aortic valve years before I did. My father had a bicuspid aortic heart valve and had valve replacement surgery. His mother had heart problems and died in her forties. No one had every mentioned to my father that the condition is genetic or suggested that I be checked for this even though the doctors had always mentioned that I had a heart murmur. I had told my primary doctor about being feeling tired, my lack of tolerance for exercise and my rapid heart rate when I do, and other symptoms. I guess he just didn't suspect it being a heart problem because of my age, this is probably common. I happened to see a different doctor for something completely unrelated and he was very concerned with my heart murmur. He immediately said that he suspected I had a bicuspid aortic heart valve and when I mentioned my father had that as well he told me I should get appointment to get this seen to immediately.
 
Welcome aboard Blinne!

I always recommend that BAV patients see Doctors at a Major Heart Hospital (surely there are some in Seattle) because BAV and Connective Tissue Disorder can have complex issues that most Cardiologists and ByPass Surgeon's rarely see.

I think it's time for a Second Opinion at a Major Heart Hospital.

'AL C'
 
I add my welcome to those of the others, Blinnie. About a year ago, I had a number of symptoms that I was certain were caused by my aortic stenosis but my cardiologist believed were unrelated. He decided that part of my problem was that I become generally run down so he sent me to cardiac rehab. By the time I finished it three months later I felt quite a lot better. When my AV began giving me problems this summer, he had much more confidence that my symptoms were being caused by the heart valve which he confirmed with an echocardiograph followed by a heart cath. I mention this to illustrate that sometimes our doctors really do make the right call. If you believe that your doctor is wrong then you really have to seek another opinion. No doctor worth his salt would question such a request.

In July, my own primary failed to diagnose my painful left arm which had become very weak as time passed. I wondered often if it could be related to my heart problem. When my doctor finally sent me to physical therapy, it turned out that my left clavicle was dislocated at my left shoulder. The therapist put it back in place and it is much improved today. I would just urge you to be a little careful of self diagnosis. We are complex organisms but not every problem is related to another.

VR is a good place to start reading and to pose questions. As many of us have, it is a good idea to educate yourself so that you can discuss your problems intelligently with your doctors.

Stress can itself be a major problem. Perhaps, you might discuss options with your primary care doctor for dealing with that first because under stress we do not always make the best decisions. Start with something you know and work from there.
 
Thank you for the advice about getting a second opinion at another hospital. I just made an appointment with a cardiologist at a Virginia Mason in Seattle and I am hoping for some better answers. Today the swelling left arm continues to get worse and I've just noticed bruises forming down my arm. I just want to know what is happening but both my cardiologist and my primary doctor are out of town right now and the only option is to go to the ER which has always been a waist of time.
 
When was your last echo and what were the results? Left arm may not be related to the heart, but keep pushing for answers.
 
My last echo was just a few months ago. I will continue to try to look for answers to this today. I dread what it will finally end up costing until they figure this out. I already had two MRIs and x-rays. The use of my arm is so limited that it is makes it very difficult to work. I am a single mom and work full-time for the health insurance and the pressure of working through this and getting in enough hours causes so much additional stress. My work does offer short term disability but I didn't want to have to use it until I needed surgery. My cardiologist does seem sympathetic to my situation being a single mom with a young child. This along with constantly feeling tired because of the aortic regurgitation is almost too much to deal with.
 
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