MVP w/severe regurg w/mxyoma

[Nisleg]

Hi, my name is Yvonne. I have been diagnoised with MVP w/severe regurgitation and mxyoma in my right atrium along with pulmonary hypertension. I suffer from shortness of breath, fatigue, either palptation or squeezing of the chest. I am in the US Army and my doctor just want to monitor before performing surgery. I am not sure what I am dealing with and would like to hear from others on when they had surgery and what their symptoms were before the surgery. When should I insist that the surgery be performed. How long should I wait. The doctor told me that my valve would have to be replaced and the tumor would have to be removed. Any information on others experience. To top all of this off I also have asthma.

 

[Christina L]

First of all, if I were you, I would get some more medical opinions - a second and even a third, regarding the timing for your surgery. If your mitral regurgitation is severe, things can get worse very quickly. The school of thought these days is to replace or repair a valve before symptoms develop, so there is no major damage to the heart.

Bottom line, I would get some more cardiology opinions just to be on the safe side.

Best wishes -
Christina L.

 

[Nancy]

Hi Yvonne-

Welcome to the site.

We have a friend of the family who had a myxoma removed. Her surgery was done by Dr. Harry DePan, who did my husband's surgeries. Her surgery went very well and she's fine now.

She told me that when it was discovered, she was told that this tumor had to be removed as soon as possible, because it can restrict bloodflow within the heart and it was done that way, probably within a month or so.

You can look up her posts if you go to the "members" section at the top of this page. You should look for Helene Smith. Then just click "search" and her posts should come up.

If your doctors aren't wanting to do this soon, I would be looking at getting a second opinion.

By the way, my husband also has pulmonary hypertension. He is on Tracleer. his PH was severe a year ago. The pressures have now gone down to the moderate level. There are several medications which can help. You should be seeing a PH specialist for this condition. Since it's a rare disease, not every cardiologist or pulmonologist sees enough cases to understand all the ins and outs of the situation.

Here is a link to the Pulmonary Hypertension Association website.

http://www.phassociation.org/Message_Boards/main.asp?board=1

 

[Dee]

Hi Yvonne,
I was diagnosed with a myxoma that was attached to my Mitral valve. I was kept in the hospital under close supervision and had surgery 3 days after discovering the myxoma!!! What they told me about the risk of not taking out the myxoma was that it could break loose or pieces of it could break loose and cause a fatal heart attack or stroke. I don't want to scare you, but they were very concerned about mine and insisted on doing surgery ASAP. I would definitely be getting some more opinions!!!
I am 39 years old and had my surgery only 4 months ago. They had to replace my mitral valve with a mechanical one. The surgery went really well and the recovery is going well also. I had no idea anything was wrong with my heart and was shocked and scared when they told me I would be having emergency open heart surgery, but I'm glad I did it, it probably saved my life! Just from my experience, if I were you, I would be looking for another cardiologist. If you have any other questions for me send me a private message and I would be happy to answer any questions that I can. I understand what you're going through and wish you the best of luck!

DeeDee

 

[Georgia]

Hi, Yvonne. Just dropped by to welcome you. I'm total agreement with the others who've said you should get a second opinion.

I'm sure you're scared and confused; we've all been there - and this is the place to deal with it. We're here to get you through this.

 

[Nisleg]

Thank you

Thank you

Hello, it's me again. First I want to thank all of you who so graciously replied to my first post. It was comforting to know that there were others out there who knew and could help me make sense of what was going on. I had been praying that very day for God to give me an understanding and he revealed this site for me. You are all Godsends. I give God the glory that you all have survived and are living blessed lives. As I said I'm in the Army and right now I'm dealing with extreme fatigue. I am constantly tired and now matter what I do I am tired. I recently had blood work done and it was all normal. I did a thyroid test but so far I have not heard anyting negative as far as the results. Did anyone else deal with the fatigue. My sob is really getting to be a pain. I walk from the Metro to work and sometimes I walk like I need to use a cane or need to be in a wheelchair. Is this normal. I am only 46 yrs old. Climbing stairs is sob and just cleanign up can also lead to this. My chest pains and palpitations are really bad at times. Some days it constant. I would like to know what are others experience with symptoms. I go to the cardiologist tomorrow for a stress test and the results of my echo. My last stress test I only last seven minutes, my chest felt like it was about to bust. As I stated I'm in the Army, my last PT test I passed but I barely made the walk, but Ihad to pass. It's scary and I'm scared but I trust God for me. I'm grateful that I found this site and you all have been a blessing reading about your testimonies and hearing your personal triumphs. Thank you. Dee, I will write you a private email first chance I get. Also, what does the surgery entails such as how long is the procedures, recovery time, and rehab. I have so many questions and concerns. thank you once again. Be blessed.

 

[Nancy]

Here is a site that talks about all the different valve problems and their symptoms. Plus pulmonary hypertension can cause extreme fatigue and SOB. So you have several things going on which can cause your fatigue.

http://www.tmc.edu/thi/valvetype.html

 

[terry40]

Hi Yvonne

Hi Yvonne

I just found out 2 days ago, that when they removed my severely prolasped mitral valve they found it severely involved with myxomatous disease.

I'm floored! I was never told of this before or after surgery, and I finally got a copy of the Surgeon's report and there it was!

I've been doing an internet search, and family search, an uncle and cousin had/has tumors in their hearts.

I agree with the others, Get this taken care of ASAP.

Terry40