TEE test and questions (Marfans?)

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alli sunshine
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Date Joined May 2009
Total Posts : 40
   Posted 4/8/2010 8:14 PM (GMT -6)   
I am a 43 year old woman. I have a history of back issues. My spine is fused from T3-L2 due to kyphosis. I went to a new orthopedic doctor about a month ago due to severe pain and a worsening of some of the curvature in my back. While he was doing my exam, he asked me if I had ever been tested for Marfan's. I have not. He said that some of the things he was seeing could point to that. I have had anemia for about a year and a half that I just can't seem to kick. I have very long fingers, long legs, thin build, etc., and I have pain between my shoulders that he can't explain. (I have looked at signs of Marfan's and I do have some, especially in skeletal realm.) He said is might not be classic Marfan's but perhaps a variant. He wanted an echocardiogram done. I found out today that instead of just a regular echo, they want to do a TEE. I was somewhat taken aback by the TEE, because of the sedation,etc. I wondered if anyone has had a TEE and what the experience was like. I had an upper gi endoscopy last year, so I assume it is similar. I also wondered if anyone has any experience with Marfan's.

This just really shook me today. Don't know why, I guess it just seems so much more involved now. Thanks for any thoughts.

New Member

Date Joined Jan 2010
Total Posts : 10
   Posted 4/8/2010 9:15 PM (GMT -6)   
I have had a TEE done before and the sedation is mainly just to relax you so you will be able to swallow the camera. It is just alittle uncomfortable but the test if more accurate then just your regular echo. When you get the results back, make sure you find out how large your aorta is. In Marfans and some other Connective Tissue Disorders, the heart is the main concern.

I was diagnosed as Marfans since the age of 13. It wasn't until I was 42 and underwent a Valve Sparing Surgery and my aorta was repaired, that I found out that I was diagnosed as Loeys Dietz Syndrome. This is an aneurysm disorder/connective tissue disorder. There are many variants of Marfans and there is much more information found on www.marfan.org. To find out information on Loeys Dietz go to www.loeysdietz.org

I suggest you read up on the syndromes and arm yourself with knowledge. Write down questions and ask away with your doctor. Get copies of lab or any test results.

Next, relax. You will do fine. Where are you from? I am in CA and have found great doctors at Stanford University. Take Care and keep us posted.
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