Heart Problems and CMTC - Vascular Birthmarks Foundation Forum
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  #1  
Old 01-16-2010, 08:55 PM
abatie abatie is offline
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Default Heart Problems and CMTC

Does anyone have experience with heart issues and CMTC. Our daugther Becca was diagnosed with arterial septal defect (three holes in her heart). I have never read about this in anything that I have read through my research. Any info. would be great.
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Old 01-16-2010, 09:54 PM
missy missy is offline
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Is it possible that the two things are not connected? I have also never seen anything about that.

How is she doing and what are your plans now?

Missy
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  #3  
Old 01-17-2010, 01:45 AM
abatie abatie is offline
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First I don't know where my posts keep going - they are disappearing. We don't know if the two are connected for sure. We didn't get to see our primary doctor after the holes were found and the cardiologist didn't seem to know anything about CMTC. She will call or send a final report this week. We will be going back to Rochester in 6 months. They wanted us to meet with a PM&R in April but I said it needed to wait until we go in July. He hadn't bothered to return my doctor's call in three days so I guess I thought he must not think it is important.
Becca is doing well. She is so glad to be home and able to play. She was so out of her routine so now we are going to work hard to get back on track.
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Old 01-20-2010, 07:45 PM
abatie abatie is offline
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We got a call back today from Mayo and the news wasn't good. They doctor did not like the results and we have to go back and meet with a pediatric cardiologist to decide what is next. I don't know what comes after the appointment Monday.
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Old 01-20-2010, 09:56 PM
missy missy is offline
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In looking through everything that I can find on CMTC, I just don't see much information about cardiology problems, certainly not like that.

Have you been able to find any other resources?

Missy
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  #6  
Old 01-20-2010, 10:38 PM
abatie abatie is offline
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I haven't been able to find anything talking about cardiology that is serious. My doctor was really nervous when I talked to her today. I am not sure where else to look because I have went all over the Internet. I am pretty scared when they wanted us to come back so fast. Maybe there is somebody else out here that has heard of this.
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Old 01-21-2010, 12:17 PM
missy missy is offline
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Do keep in touch! I feel so badly for you and your family. All this is so awful and stressful.

Missy
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  #8  
Old 01-25-2010, 08:13 PM
abatie abatie is offline
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Good news today!!! Becca doesn't need surgery right now and is stable. She will probably need surgery by age 5. There are two different surgery options. One is much easier in which a device (or two) is placed over the holes. It is run up through a vein. This option might not be possible either because of the location of Becca's holes or the strength/size of her veins. The other option is to open her chest by cutting/breaking her breastbone, stopping her heart, and then either stitching or patching the holes.
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Old 01-25-2010, 09:35 PM
missy missy is offline
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Well, that is good news! Finally... it's good to hear something that isnt' so negative.

What's the next step?

Missy
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  #10  
Old 01-25-2010, 10:05 PM
abatie abatie is offline
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She will be starting Birth to Three services soon for physical therapy. She will qualify for services because of her medical issues because kids can qualify if there is a medical diagnosis that may cause her to fall behind.

As far as her doctors at Mayo we don't need to come back until July. They will then reevalute her leg size differences, recheck her heart, and meet with us to see how she is dealing with CMTC and deal with any problems she may be having.

The doctor we meet with today said that the heart issue may or may not be related - he said it is almost impossible to know. He made a good point - does it really matter if the two are related? I guess that's true - we will deal with whatever issues whether they are related or not. The only thing is that it would be nice to know for other families.
We will continue with updates as Becca develops and as we deal with monitoring her health. This whole experience has made us even more appreciative of or kids and we find ourselves taking the extra time with them even if it means we have to be up much later at night to finish what we didn't get done. Maybe CMTC has been a blessing - we have definately slowed our pace and are enjoying life rather than just going through life.
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