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Bigskyfam

Cardiac Echo

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Bigskyfam, 

Have you joined the forum at www.ednf.org?  They have pretty good resources for docs in differentparts of the country but not a published list like we do. You would have to get on the forum and ask for the experts closest to you.

In the meantime,  I personally would ask the cardiologist for a referral to a cardio - thoracic surgeon to get that ball rolling for a consult. If she doesn't know what to do, the least she could do is give you a referral (of course, if she were really concerned, she would help you find a doc that does have a clue about this, in my opinion. ) There are people besides EDS'ers that can have this condition.

Take care of you!

Katie 

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I would contact the local cardio to see if they will talk to you abtou this particular condition, which is a cardiac condition and not POTS.  It sounds like it would be helpful to get a second opinion from a doctor that is more familiar with the condition and gives you confidence.

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I'm on ednf. This is my 4th cardiologist. I'm now seeking a consult with surgeon for opinion treatment plan. My chestpain and sob are not pleasant. They are different. Finding someone to listen and take me on will be a challenge... Big city get ready for my phone calls

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My pots doc put in referral for aorta specialist who is trained with connective tissue disease. Appt is end of July. Although I'd like to be seen sooner. I need to have some faith and patience. I think this would overall be a better choice than a telemed visit even though it be quicker. So until then I'm not doing anything crazy and trying to take it easy... Not looking forward to a 12 HR drive but loving the fact that I feel cared for by my specialist.... And I feel better on the coast.. Thanks for asking!!!

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So glad you're getting to the right specialist!  July will be here before you know it!:)

Edited by Katybug
grammar

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I'm really glad to hear that you have an appointment with a specialist and that your neuro is helping you.

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Hi thanks for checking in!

overall feeling the same. Saw geneticist who was fairly helpful. Starting pt and trying to get to specialist end of July. Heat is coming, so I'm doing more indoor activities and late nights outside. Haven't had a bad episode since moms day... With the exception of my daughters highschool grad party. One word? Staircase. Ugh. I used to take stairs all the time. Now I loathe them. 

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I'm sorry that it is taking so long to get answers but I am glad you're hanging in there. I hear you about the heat-I don't like it. Yeah, I am like Cousin Slowpoke on the stairs at times (rather than Speedy Gonzales).

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Hi,

Everyone seems quite knowledgeable about EDS and echo exams here. Do you mind if i ask a question? Can anyone tell me if EDS 3 means you are prone to heart problems. I had an echo 5 years ago and have EDS 3 and the doctor has suggested  i get another done soon - but like you I am still waiting.

Thank you

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I have HEDS (3) and my geneticist and cardiologist require me to have an Echo annually. While aortic root dilation is more prevalent with Vascular EDS, we are still at higher risk than the healthy population.

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My mum has just been referred for genetic counselling and testing for EDS, as a result of them finding aortic dilation on her echo.  She also has mitral valve prolapse.

I was sent for an echo on the back of that (results next week) and have been told I should have one at annually from now on.  I am hypermobile, without an EDS diagnosis, most probably hypermobile type though. My middle son has Joint Hypermobility Syndrome and is diagnosed and my mum's presentation fits most closely with Classical EDS.  Myself and my children will all go through counselling testing if/when she gets her diagnosis, which will hopefully help us piece together a bit more of the puzzle.

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Glad that the docs are on top of this for you and your family,  Womble! I know you've had some struggles with the docs on the POTS side, so it's nice to hear that you are at least getting some help with this issue. :)

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Thanks Katybug.  Yes, I was quite shocked they actually took it seriously and took action for once.  Different doctor though, so I suppose that's what made the real difference.

I had my echo results this afternoon and was told it was all clear, normal and healthy.   

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