Echocardiogram standing vs. lying flat

[Gingergrrl]

I will be having an echocardiogram next week and I read that Dr. Cheney said that most PWC's have diastolic dysfunction but that the standard echo often misses it b/c it is done while the person is lying flat.

He recommends doing a second part of the echo with the person standing up and said this is how he diagnoses diastolic dysfunction.

I know if I ask the technician at the appt, they will think I am crazy and say that it can't be done. So I need to ask my cardio first and he is very hard to reach (and he may also say I am crazy and that it can't be done.)

I wanted some advice on how to proceed and wondering if anyone has ever had or requested a standing echo. Not sure if any patients of Dr. Cheney on the board?

 

[halcyon]

It looks like standing echo has been used a bit in patients suspected of having mitral valve prolapse where the supine echo showed a false negative. So it's not that far out of an idea but I'm not sure how you could talk the cardio doc into it. I guess it's the midway point between a normal echo and a stress echo. Maybe ask if you can do a stress echo without the exercise part?

 

[halcyon]

I believe this is the study they are talking about on this page, but it seems to be about impedance cardiography not echocardiogram.

 

[Gingergrrl]

@halcyon do you have any link to where it says standing echos are done in MVP? I don't have MVP but trying to find something scientific and not specifically about CFS that I can show my cardio.

Actually even if the link is about CFS it is okay if it is something that you think is clear and will convince him!

I had an exercise echo back in July by my former cardio but the echo portion before and after the treadmill was lying flat.

 

[Gingergrrl]

Sorry we must have posted at the exact same time! I have read the Peckerman study and printed it for both my former and current cardio but impedance Cardiography is no longer used. I even tried to locate Dr. Peckerman and the company who made the machines but it was a dead end.

Two other people sent me that second link today but I couldn't figure out where it talks about standing echocardiogram unless I am just missing it somehow? If I send it to my cardio, I want it to make sense what I am referencing and I couldn't make sense of what Cheney was saying!!!

 

[halcyon]

Yeah it appears they are not talking about echocardiogram on that page I linked. This page is the only reference I could find to Cheney and standing echos.

Here is an abstract about standing echo and MVP.

 

[Gingergrrl]

Thank you and those are great. I will figure out a way to get that info to my cardio before my echo. I am wondering though if Cheney and that research study had special equipment to do a standing echo or if any doctors office can do it?

 

[beaker]

I took papers and info to my cardiologist. He dissed it all and ME and then wrote in my chart that I brought him "magazine" articles. Like it came from Better Homes and Gardens or something.
I haven't seen him since.
I wish you luck and a much better experience.

 

[Gingergrrl]

@beaker, I am so sorry you had that experience and I had something very similar happen to me with a former doctor as well.

I e-mailed my cardio & cfs dr the info about the standing echo with a quote from a Cheney patient and another quote from Dr. Cheney himself. My cfs dr responded that he thought the standing echo was an excellent idea so now I am just waiting to talk to my cardio to see if it can be done.

@halcyon thanks again for the links you provided and they were really helpful!

 

[Gingergrrl]

I've been going in circles with this all day and got a phone call that my cardio's office does not take my new insurance. It is through Covered CA (an Obama Care plan) and is a platinum PPO and supposed to be good.

I lost my employee sponsored coverage even though I have still not been medically separated from my job. I haven't worked in nine mos but I guess they are still hoping I will come back which sadly is impossible.

But to get back to the point, all future visits and tests including this echo with my cardio will not be covered. I am assuming the saline infusions which led to me being rushed to the ER are covered but now I am not sure.

The insurance person said that the tech cannot do a standing echo but that the doctor would call me and I have been waiting all day for this call. I want to ask him a few questions about the echo and now wondering if the standing echo is just a rare & obscure test done by Dr. Cheney that no one else replicates?

I will eventually have to switch to someone who takes my insurance but he will be doing disability paperwork for me and I need his help with that. At least medications are covered.

Today has been one if those days where I felt like giving up and this whole process is just too hard and I am losing the fight to keep researching and advocating.

 

[Sushi]

My "like" of your post above is a hug.

 

[Kati]

Ultrasound techs would abide by the standard of care, which is performing a heart echo in suppine position. Your cardio would need to order the tech to repeat it upright, and see the comparison.

Cheney does his own echos, so he doesn't have to tell anybody to have the patient stand. I would also suspect the patient is not standing but is tilted in position. Safer for the patient and there would be much less movements that way which is important to have good images.

Good luck maybe your autonomic cardio is curious and would like to see the differences between standing and reclining for himself.

 

[Gingergrrl]

@Kati, I totally agree with you and never had any intention of asking the technician. The insurance biller called to tell me the great news that nothing would be covered which prompted me to ask re: the standing echo (out of curiosity if they had ever done it before) and she asked the tech who said no. I am still waiting for a call back from my doctor but not holding out any hope at this point.

I want to ask him if he has ever done or even heard of the standing echo before or if he knows of another doctor or location that he could refer me to for the test. he works at several different hospitals so I am curious if he has encountered it before. I know it is a long-shot and Cheney may be the only one b/c he seems to have a lot of obscure and outlandish techniques that no other doctors do.

I figured it would be done on some kind of tilt table or the image would not be clear which makes it even more of a long-shot that I will ever get this test.

 

[WillowJ]

This may be a newer technique. I think it is another small study ( ME/CFS research, what's new), but looks interesting to me:
http://www.ncbi.nlm.nih.gov/pubmed/21793948

Dr. Julia Newton and Dr. Kieren Hollingsworth have a few related papers.

Edit: here's the standing one:
http://www.ncbi.nlm.nih.gov/pubmed/20497461

and yes, hugs!

 

[Kati]

So sorry about the added financial burden. I suspect echos do not come cheap in the US :-(

 

[Gingergrrl]

I can't get anyone to call me back from cardio office so still in limbo on this issue.

 

[Gingergrrl]

I wanted to give an update and apologize that I haven't been able to respond to all of the PM's that I got with wonderful support, suggestions & links. I plan to respond to everything as soon as I am able.

I never heard from my cardio who is out of town again (this guy seems to be a world traveler and never around.). But the head of the dept who does the echoes called me and said that my cardio talked to her re: my request and she is going to attempt to do a standing echo after they perform the standard flat (supine echo.)

She said she had not done it before and it may not work but willing to give it an attempt. I explained why I wanted it and asked her about diastolic dysfunction and ventricular stiffness in light of what happened to me with the saline IV.

She felt that a standard echo would also be able to capture these things if they are there. In any case, I felt good about the conversation and that it is worth the attempt. I was afraid an echo might be thousands of dollars the way everything is so overpriced here but she said somewhere between $300 to $400 so I said okay.

In Jan we can switch to a different plan within Covered Ca that my cardio takes and I guess we made the wrong choice of plans. The whole process was very confusing.

Lastly, I have decided if this test does not show a cardiac problem that I have to accept that my issues are autonomic from the ME/CFS and move on from there. Someone (I think Dan062?) had started a thread asking when do you fully accept the ME/CFS diagnosis vs. doing other tests & diagnostics and I think this is the end of the road for me- both financially and emotionally.

If I can no longer walk more than a few feet without a wheelchair and this is part of ME/CFS or dysautonomia, then I have to accept it. I will continue with all the treatments & blood tests of my CFS dr and continue to monitor my thyroid levels, etc, but it is too exhausting and disappointing to look for other answers which never come.

Not sure if others relate to this or if I have explained it well?

 

[Sushi]

If I can no longer walk more than a few feet without a wheelchair and this is part of ME/CFS or dysautonomia, then I have to accept it. I will continue with all the treatments & blood tests of my CFS dr and continue to monitor my thyroid levels, etc, but it is too exhausting and disappointing to look for other answers which never come.

What has helped me is "taking the long view"--Evaluating the changes in my symptoms in a period of 6 months or more. The treatments that have given you so much trouble lately are symptomatic treatments, and while, when the quality of our life is so poor, this is the obvious place to look for help, any positive changes symptomatic treatments might bring, while welcome, are dependent on continuing these therapies.

Longer term improvements, though, in my experience have come from treating the underlying conditions that cause the symptoms. This change is usually very slow, but many of us have found incremental positive change, over time.

So yes, I accept my present limitations, but I also hope for more incremental changes--but take a long look: "Maybe my quality of life will be considerably better in 2 or 3 years. I like to remember that even though research is way underfunded, it is going on and sooner or later I think we will find clinical help from new discoveries.

 

[Gingergrrl]

@Sushi

What has helped me is "taking the long view"--Evaluating the changes in my symptoms in a period of 6 months or more. The treatments that have given you so much trouble lately are symptomatic treatments, and while, when the quality of our life is so poor, this is the obvious place to look for help, any positive changes symptomatic treatments might bring, while welcome, are dependent on continuing these therapies.

Hi Sushi, for some reason even though I read this paragraph multiple times, I am not understanding it (and I know it is me and not you!) When I evaluate where my symptoms are now vs six mos or one year ago, the downward progression is horrific and terrifying. Last Christmas I was not only still working full-time, I was able to take an hour long walk with my step-daughter and my dog to the park. I was driving every day, able to go Christmas shopping at the mall with my step-daughter and I remember us both buying new bathrobes (that were quite heavy) and carrying the boxes, plus gifts we had bought for others, plus fancy drinks we bought at the coffee cart all around the mall for hours and I was not even slightly short of breath. I was very fatigued and did not feel normal but I would do anything to go back to that level of functioning.

Now I can barely walk from my bedroom to the kitchen, can only take a shower once a week with a shower chair, and have to use the wheelchair when we go out. Either my cardiac or my autonomic system is destroyed and I am grasping at straws to find a treatment that will help me. I have had minimal help from Midodrine, which I guess makes me dependent on taking it but is that a negative? I just want to make sure I am understanding what you mean.

Longer term improvements, though, in my experience have come from treating the underlying conditions that cause the symptoms. This change is usually very slow, but many of us have found incremental positive change, over time.

When you say longer term treatment of the underlying conditions, that is what I am trying to do by taking the Famvir. I have taken it 3x/day and not missed one pill since I started in the hope that it will help me. I also force myself to rest for most of the day (missing out on 90% of activities with my family) and force myself to drink electrolyte drinks and things that I am told will help me in the long term. I am also going to be starting nebulized magnesium per the protocol by Dr. Sarah Myhill which has greatly helped some people long-term.

The one thing I am struggling with is eating b/c I never feel hungry and have shortness of breath when I eat. I am down to 107 lbs but I can't figure out a solution to this issue. Other than eating, though, is there something else long term that you recommend? I am asking this with total sincerity and deperateness (I know it is hard to tell a person's tone by a post!) and am asking from a place of respect b/c I will do anything to get better.

Every time I get a new idea from you or someone on PR, I run it by my cfs doctor to get his feedback. I also take a lot of supplements that are supposed to help me long term in the hopes that they will.

So yes, I accept my present limitations, but I also hope for more incremental changes--but take a long look: "Maybe my quality of life will be considerably better in 2 or 3 years. I like to remember that even though research is way underfunded, it is going on and sooner or later I think we will find clinical help from new discoveries.

I try to tell myself this every day- that my quality of life will be better in 2-3 years, but I am really losing hope when I can barely take care of myself and I used to be the most independent high functioning person you could ever meet. I do have faith in the research and am using my limited energy to write a paragraph that will be part of the End ME/CFS Project recurring gift campaign letter. I am thrilled and honored to be doing this and I do believe at some point, they will find a cure to this illness. I am just not sure if it will be in my life-time. At some point, all the doctors and people who did not believe this is a real illness, will look like fools and will be on the wrong side of history but I feel that is still so far away.

 

[Sushi]

Let me try to clarify: by the long view, I don't mean looking backwards as to how you were functioning six months or a year ago. You have had a major decline in the last year, so you will be functioning at a much lower level now.

I mean taking stock of your symptoms every 6 months or so since you have started treatment. Probably most of us, even when we found a knowledgeable doctor, spent the first year or so of treatment trying things that "might" or "could" help, but since it is very hard to predict, found that over half of the treatments we tried didn't help or made us feel worse. That is just how it goes with an illness that is so poorly understood.

But occasionally you find something that helps, and then something else that helps. This can be cumulative, especially with the help of a good medical practitioner.

Either my cardiac or my autonomic system is destroyed and I am grasping at straws to find a treatment that will help me. I have had minimal help from Midodrine, which I guess makes me dependent on taking it but is that a negative? I just want to make sure I am understanding what you mean.

It is great if you find symptomatic treatment (like Midodrine) that helps. I am not saying that it is bad to find help in these treatments but that, though they will help you to function better until some of the other treatments you are trying (like famvir) begin to help, our goal is to find treatments that deal with the underlying conditions that gave us these symptoms. I was only speaking about symptomatic treatment in the context that, while some of the hopeful ones didn't help you, perhaps you will find that your longer term treatment of underlying issues does help. This would be more significant in the bigger picture.

It would seem very unlikely that either your cardiac or autonomic system "were destroyed"--your autonomic system certainly seems to be malfunctioning (dysautonomia), but most dysautonomia is not a primary malfunction of the autonomic system but is caused by something else. It is quite possible that your autonomic functioning will improve as deeper treatments take effect. This has been my experience. There was a time when I couldn't walk across a room either.

I think I was trying to give you some hope that just because recent symptomatic treatments have failed, there is plenty of hope for improvement...but over considerable time.

Best,
Sushi