Valve Disease

Posted by Mary D @maryd, Aug 8, 2018

I'm wondering if anyone has had symptoms of valve disease that did not show up on a resting echocardiagram (ultrasound of the heart) I believe I'm having persistent symptoms of valve disease. After I exercise, sometimes a few hours later I feel pressure in my chest, shortness of breath, and sometimes fluid retention. My doctor insists that my ultrasound, ejection fraction, and valves are normal but i'm wondering if there is a valve that causes a problem only when stressed with exercise. My coronary arteries are clear. ( I just had a coronary angiogram)

@peach414144

I have valve disease in my ankles, knees and thighs not allowing the blood to flow up to the heart carrying the oxygen to the heart. This affects the eyes (going blind) and other problems such as the feet and legs are slowly dying. Supposedly had ablations but of to no avail. When the procedures were done I had no feeling, no pressure, and no pain and there were no marks on the skin. Is this another way to collect medicare without doing the procedure? (These six procedures (2 ankles, 2 knee and 2 thighs.) The valves are not working to open and close to allow proper circulation. None of the relating doctors will address this issue with me. Oh boy Ocala id deadly behind the times. At age 81 it is so difficult to travel a great distance to address these issues. And, the pain in the legs is brutal. Shame!

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@yes Im sure God will I put some peoples handles on prayer list every night

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Has anyone had the ross procedure at Mayo Clinic in Rochester MN? My aortic valve gradient is 39 mmHg and severe is 40 so they are now discussing a valve replacement. I had surgery 6 years ago for a valve repair. We are thinking about going with the ross procedure. How long did your ross last? How long was the surgery? How was recovery. Im 25 years old and this will be my 2nd surgery.

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Hello, @carlysmith011 – I wanted to let you know I've merged your post with the discussion on valve repair you were participating in previously, as I thought these members would have the most experience and knowledge to share. Hoping members like @lioness @yorlik @susanjc and others might have some thoughts for you on the Ross procedure and having it done at Mayo Clinic's Rochester, MN campus.

I wanted to commend you for thoroughly looking into your options.

I noted you mentioned severe symptoms. If you go forward with this, @carlysmith001, in what timeframe would this procedure likely be done?

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@carlysmith011

Has anyone had the ross procedure at Mayo Clinic in Rochester MN? My aortic valve gradient is 39 mmHg and severe is 40 so they are now discussing a valve replacement. I had surgery 6 years ago for a valve repair. We are thinking about going with the ross procedure. How long did your ross last? How long was the surgery? How was recovery. Im 25 years old and this will be my 2nd surgery.

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@carlysmith011 Thank you lisalucier for mentioning me I had a triple by pass am not familiar with Ross procedure but went to http:/heart.org /Ross procedure and it is very explanatory as a retired nurse I am familiar with the valves and the valve he is talking about using for the aorta valve can be US d for this purpose ,it can be replaced but the article is a good one. Sorry I never had a valve replacement but it sounds o.k .to me. Hope I helped

Liked by Lisa Lucier

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@lisalucier

Hello, @carlysmith011 – I wanted to let you know I've merged your post with the discussion on valve repair you were participating in previously, as I thought these members would have the most experience and knowledge to share. Hoping members like @lioness @yorlik @susanjc and others might have some thoughts for you on the Ross procedure and having it done at Mayo Clinic's Rochester, MN campus.

I wanted to commend you for thoroughly looking into your options.

I noted you mentioned severe symptoms. If you go forward with this, @carlysmith001, in what timeframe would this procedure likely be done?

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Hello Lisa. I am convinced that I have an issue with one of my valves. Longstanding symptoms of inability to build exercise tolerance, shortness of breath, chest pressure, palpitations, fluid retention since 2006. I had a work-up at Mayo, MN 2012. No answers. I can not get my doctors in Chicago to move beyond a 2 D echo because they feel the echo needs to show something suspicious before they will do a left heart cath or a trans-espophageal echo. Ive had a bike echo, CPX, R heart cath, coronary angiogram and several 2 D echos .Are there any other test that might show a valve issue better than a 2 D echo? I don't understand why they will not do more tests given the length of time I've had the symptoms. I even had a cardiac stress MRI but none of the tests they have done are with specific valve protocol. I just don't understand. I'm also wondering if Mayo, AZ has just as much expertise with valve disease and surgeries as Mayo MN. I don't have any family here in Chicago and my daughter lives in AZ and wants me to be seen there if they have just as much expertise in this area. Please advise if you can. Thank you.

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@colleenyoung

Hi @peach414144
Here are the contact numbers to inquire about care at Mayo Clinic Florida mayocl.in/1mtmR63

You can also find out more about Medicare coverage https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare/more-on-medicare
And ask about financial assistance programs at Mayo Clinic https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance

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Hello. Can anyone out there recommend a doctor in the Chicagoland area that specializes in valve disease? Thank you.

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Dr. Charles Davidson at Northwestern Medicine, 1-312-695-3278. He’s the best!!!

Liked by Jamie Olson

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@colleen00

Dr. Charles Davidson at Northwestern Medicine, 1-312-695-3278. He’s the best!!!

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Hello Colleen. May I ask what is your experience with Dr. Davidson? Is he a surgeon or cardiologist? did you have a valve problem that he was able to diagnose? if so, how was it discovered? I would really appreciate it if you could share your story. Thank you!

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I am quite ignorant on the stent subject. I am reading about it. Just a few days ago the cardiologist, pulmonary specialist put in three stents (9/6/18) I am now on blood thinners Xarelto 20 mg one time a day.. Most of the pain in my legs are gone but where the stents were placed are still quite painfull when I move. It has only beem 4 days now it is 9/9/18. And where did the horrible constipation come from? Any guidence on this proceedure of mine will be VERY, VERY HELPFUL. Thank you all. Peach

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@peach414144

I am quite ignorant on the stent subject. I am reading about it. Just a few days ago the cardiologist, pulmonary specialist put in three stents (9/6/18) I am now on blood thinners Xarelto 20 mg one time a day.. Most of the pain in my legs are gone but where the stents were placed are still quite painfull when I move. It has only beem 4 days now it is 9/9/18. And where did the horrible constipation come from? Any guidence on this proceedure of mine will be VERY, VERY HELPFUL. Thank you all. Peach

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peach414144 Sorry Peach your going through this . I don't know anything a bout stints my by pass was grafted veins from my leg. I was sore but Dr. told me to expect but gave me 800 mg Ibuprofen for a while then downgraded it .. Hope you feel better each day I,ll keep you in my prayers. blessing to you

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@peach414144

I am quite ignorant on the stent subject. I am reading about it. Just a few days ago the cardiologist, pulmonary specialist put in three stents (9/6/18) I am now on blood thinners Xarelto 20 mg one time a day.. Most of the pain in my legs are gone but where the stents were placed are still quite painfull when I move. It has only beem 4 days now it is 9/9/18. And where did the horrible constipation come from? Any guidence on this proceedure of mine will be VERY, VERY HELPFUL. Thank you all. Peach

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@peach414144 Two things I know about Stents and Constipation. For constipation ust the Walmart Equate generic of Miralax, Clearlax. Constipation, amother other things, is caused by various forms of Amyloidosis. Oh, and eat a bit helping of grits and eggs every day or two. Stents, Just take them as they come. I have had 24 placed. Twenty four. Now I am down to about 16 after I lost some to CABG. On doc put in 14 in one procedure. Saved my life.

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Maryd I found Northwestern Memorial and Dr Davidson, an interventional cardiologist, after being hospitalized for an unrelated cause. It was there I learned I had CHF, a congenital heart defect – a subaortic membrane, probably from birth (mind you I was 65 at that time), 2 valves with severe, and 1 with moderate regurgitation. Dr Davidson started working with me on adjusting my medications, he tested me to find out if I would be a candidate for TAVR, since surgery was not an option. He has always been honest with me, answers all my questions, and makes suggestions. I went to Mayo Clinic for a second opinion and they confirmed everything I’d been told. Unless something new comes on the market, I will never be able to have surgery but knowing Dr Davidson is watching my health I’m comfortable for the time being. Go online to nm.org – it’s a good site.

Liked by lioness

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@oldkarl

@peach414144 Two things I know about Stents and Constipation. For constipation ust the Walmart Equate generic of Miralax, Clearlax. Constipation, amother other things, is caused by various forms of Amyloidosis. Oh, and eat a bit helping of grits and eggs every day or two. Stents, Just take them as they come. I have had 24 placed. Twenty four. Now I am down to about 16 after I lost some to CABG. On doc put in 14 in one procedure. Saved my life.

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yes you know your stuff. The vein doctor I was using said you are fine and need no care. However, taking my extreme pain from the toes to the knees on both legs and with the inability to sleep because of this I went to a cardiologist, pulmonary doctor. He saw me on Wednesday,did an ultrasound told me to be back the very next day Thursday fasting. Put me to sleep and I woke up with three stents one on my right side and two on my left side (common iliac veins).The left side was so bad it required two stents. I will be returning soon for more workups. Now this is a doctor. I have been given paperwork on this. One to keep on my person and one for my records, Also a lenghty conversation explaining all of the necessities involved.

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@peach414144

yes you know your stuff. The vein doctor I was using said you are fine and need no care. However, taking my extreme pain from the toes to the knees on both legs and with the inability to sleep because of this I went to a cardiologist, pulmonary doctor. He saw me on Wednesday,did an ultrasound told me to be back the very next day Thursday fasting. Put me to sleep and I woke up with three stents one on my right side and two on my left side (common iliac veins).The left side was so bad it required two stents. I will be returning soon for more workups. Now this is a doctor. I have been given paperwork on this. One to keep on my person and one for my records, Also a lenghty conversation explaining all of the necessities involved.

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Peach414144 sounds like your doing better so glad you posted hope each day will get better

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@peach414144

yes you know your stuff. The vein doctor I was using said you are fine and need no care. However, taking my extreme pain from the toes to the knees on both legs and with the inability to sleep because of this I went to a cardiologist, pulmonary doctor. He saw me on Wednesday,did an ultrasound told me to be back the very next day Thursday fasting. Put me to sleep and I woke up with three stents one on my right side and two on my left side (common iliac veins).The left side was so bad it required two stents. I will be returning soon for more workups. Now this is a doctor. I have been given paperwork on this. One to keep on my person and one for my records, Also a lenghty conversation explaining all of the necessities involved.

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@peach414144 Glad you are keeping a journal. Hope you will never need it again, but if you do, or if your family needs it, …..

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