Results from my trip to the Mayo Clinic

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Wow, Seth, it is amazing how you have endured this and persevered in seeking answers. I am curious what kind of meditation you practice and for how long every day. I have huge anxiety and related symptoms that I am trying to keep under control.

Ponygirlmom, where do you get Hawthorne from? Is it safe? Is it available at health food stores like Whole Foods?
 
Seth-

I was wondering just how bad your heart was prior to surgery. What I am wondering is if it was bad enough to significantly enlarge your heart and make it beat extremely forcefully.

If that were the case, then there is some hope that medications could help your heart remodel and shrink some, making the heart beats less forceful.

There are many, many people through the years who have complained about "bounding" heartbeats or very forceful heartbeats after surgery. I think they all improved significantly after a while.

I also think many were slim people.

Here are some threads about the issue:

http://valvereplacement.com/forums/showthread.php?t=17543&highlight=bounding

http://valvereplacement.com/forums/showthread.php?t=2773&highlight=bounding

http://valvereplacement.com/forums/showthread.php?t=1988&highlight=bounding

http://valvereplacement.com/forums/showthread.php?t=1528&highlight=forceful+heartbeat
 
I made the trip to the Mayo Clinic out of hope and desperation due to my pounding-vibration issue.

............

Dr. Cohen thinks we will learn a lot from this research, though he's concerned I "may not benefit as much as we would like" (i.e. no solution for me). I know whatever is learned form this study probably won't benefit me personally, but I'm still very excited about it. The study matters to me personally because I want to do everything I can to prevent other people in the future from enduring what I have. At least there will be some purpose, some good that comes out of it. I believe this will happen through awareness of the issue and research and development and I'm very grateful to Dr. Cohen for his efforts so far on this issue and I intend to do everything I can as an advocate.

Seth, I am very disappointed at the outcome you had from Mayo clinic, but I admire you and admire your spirits in the last para. Do not give up!! "Seek and you shall find"!!
I have a question for you: When it was mentioned that you are skinny, was it mentioned that this pounding/shaking will become less noticeable if you gained weight?!
From the survey you made, werer all in your boat skinny?

I am keeping you in my prayers and you keep on praying too!

Best regards and wishes. :)
 
Bina, good point, tomorrow I will have blood drawn for INR testing and I'll let the Coumadin Clinic doctor know I'm taking Hawthorn.

Nupur, I do not practice meditation on a regular basis or for a set period. I only do it when I feel anxiety coming on or feel like doing it. The time anxiety is the worst for me is immediately when I wake up in the morning and I already have it so I don't have an opportunity to use meditation to head the anxiety off. The meditation imagery I use is as follows: First I close my eyes and concentrate on relaxing parts of my body and having the tension flow out of me. For example: I focus on, and relax, my jaw, then my face, then my shoulders, arms, hands and the tension leaving out my finger tips. Then I focus on, and relax, my chest, stomach and on down ending with tension leaving through my toes. After that I usually make sure my shoulders and jaw have not become tense again. The next stage is I visualize a warm sunny day in Akumal Mexico and a beach there where I've spent time relaxing and diving/snorkeling with sea turtles. I imagine the sun permeating me, flowing through me, taking away any tension. There's a cool fresh ocean breeze on my skin. Then I visualize slowly going down 10 sandy stone steps leading to the beach that I love. As I go down I am counting each step and visualizing each number carved in the stone. With each step down I am becoming more relaxed. When I get to the bottom I visualize laying in the shade of palm trees or a palapa, or going out swimming with the sea turtles. Or I lay in the shade and make positive suggestions to myself, such as "I am alive, the pounding-vibration tells me my life was saved, today is good, I am good, there are good things I will do because I am here." You know, things like that. Or I consider a topic I want to address. When I am ready to finish meditating I slowly walk back up the steps counting and picturing the numbers again but becoming more "awake" with each step up. On step 3 I open my eyes, and the top I stop visualizing/meditating.

Nancy, while it is not uncommon for some people to experience a more forceful heart beat right after surgery that is not my issue and never has been. Prior to surgery I did not have stenosis, an enlarged heart, reduced blood flow or anything of that sort. Three surgeons and a cardiologist agree the vibration is caused by the valve, which shakes everything inside. Apparently I feel it more at the top of my chest than at the valve location because the vibration travels upward along with the force of the blood ejecting from my heart up into an ascending aortic column which is now an artificial Dacron conduit (hose) and does not expand to absorb this energy the way a natural aorta does. While the aortic conduit does nothing to absorb the vibration it may also play a role in causing vibration, but this is why it's important for the proposed testing to go forward, to have an opportunity to figure these things out.

Eva, no doctor has recommended gaining weight. When the doctors say "thin" they are really referring to the size of my chest cavity. For example when Dr. Sundt wrote to SJM he said I have a large valve and a thin chest. Gaining weight doesn't change the internal dimensions of my chest. When I blow most of the air out of my lungs the vibration in my collar bones reduces, it's still there but becomes less. When my lungs collapse there is probably more room in my chest cavity and less of the vibration gets transferred to my bones/skeletal system. The pounding-vibration occurs strongest at the top of the sternum and collar bones region. That area is near the top of the ascending aorta and the aortic arch. I'd have to become obese to put weight on this area. Not only would it be ineffective, but it wouldn't be a healthy course of action for me. When I gain weight it's mostly on my belly anyway, you know, the skinny legs pot belly physique. Unfortunately in the survey I didn't ask about body type or chest size. Obviously that would be good information to have. But the size of the chest cavity related to vibration transmission is relative to a person's height, size of heart and other internal organs, valve size etc. all things that would be difficult to get answers to in a survey.
 
Seth, sorry to hear that the Mayo trip did not render any answers.

I have myself made any real improvements, but have been more focused on partly resistant (not MRSA) post-surgical infections (form my last minor surgery).

I have however tried a little bit with magnesium supplements, and I notice some difference of the strength of the beats. I don'tthink the amplitude is more than say 10% less, but the sound/sensation is somewhat smoother.

Anyone knows about any drawbacks with eating magnesium? I know that you have to keep the magnesium/calcium balance OK, but I guess all the milk I am getting while drinking lattes and other stuff at home and Starbucks should give me more than enough of calcium.

In any case, good luck with your continued efforts.

::g
 
Gustaf, I take 500 mg of Magnesium daily for Restless Legs Syndrome. It seems to help with that, I'm not sure if it helps with my pounding-vibration issue or not because I've been taking it ever since the surgery. I know this is not an issue for you because you are not on Warfarin but I was told at my Coumadin Clinic that magnesium can interfere with the absorption of Warfarin and not to take magnesium supplements 2 hours before or after taking Warfarin. I was also told that Hawthorn Berry can increase the effect of Metoprolol (drop in bp).
 
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