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abatie 02-28-2010 02:16 AM

User and Login Problems
Because Becca's case has gotten so involved I have again tried to use the ask an expert but it tells me I need to login. I am already logged in and then when I try again it says it doesn't recognize my username and password. Obviously I know what it is because I can post. The questions I have for the CMTC expert-
1) Is there any research showing a connection with atrial septal defects and CMTC?
2) Is there any research showing a connection with hearing loss/deafness and CMTC?
3) Who should be the primary doctor in the management of CMTC? We have so many specialists involved nobody is sure who is in charge.
4) Do others have limited use of the affected limb? Limited use on the entire side of the body?
5) What treatment is suggested for limb length discrepency?

missy 02-28-2010 02:27 PM

I'm sorry.... this is a problem when switching from the domain name ( to the IP address (

This is the link for Ask the CMTC Expert:


So, you can try the second one and it should work for you. If it does not, I will send her your questions.


abatie 02-28-2010 03:07 PM

Sorry I tried it and it still won't work. Could you please forward them for me? I am hoping to maybe have a little more information to take with when I go back to Mayo.

missy 02-28-2010 11:42 PM

Sure thing! I'll let you know when she gets back to me.


missy 03-09-2010 09:39 PM

I got this just now:


To Whom It May Concern:

1. Most patients with CMTC do not have other medical problems. Most commonly, patients can have leg length discrepancy, which can present over time and cause knee, hip or back pain. Many disorders have been associated with CMTC but many of these are not true associations. Many of the reported cases of CMTC are actually capillary malformations.

2. CMTC has also been associated with hearing loss. Again, many disorders have been associated with CMTC but they may not be true associations.
3. The primary doctor depends on who is the expert in your area. For example, it could be a dermatologist, plastic surgeon or pediatric surgeon. Many specialists care for patients with vascular anomalies and it varies by center.
4. Hemiplegia (limited use of one side of the body) has been associated with CMTC.
5. Leg length discrepancies are frequently seen in patients with CMTC on the leg. Treatments consist of shoe lifts and epiphysiodesis if needed.

These recommendations are based on the information provided. They do not reflect a formal consult, as we did not examine this patient in person nor did we review his/her medical history in its entirety.

Please let us know if you have other questions.

Best regards,

Marilyn G. Liang, M.D.

abatie 03-10-2010 03:22 AM

Thanks Missy!!! We had our first appointment today (of this week) and it was great. The doctor we saw today determined that there are no other vascular issues/syndromes besides the CMTC. Unfortunately he doesn't know enough about CMTC to tell use what is associated or not. We aren't going to get to see her primary CMTC doctor this visit. They cancelled the GI specialist because she is doing so much better with feeding. I am frustrated in that he didn't seem very supportive of her getting support therapy. I am not really sure why. Hopefully the PM&R specialist on Monday will be more supportive. He also thought it was important for her to have the hearing screening because he saw the inconsistency. I thankful for the response from the expert. It confirms what I am seeing. So frustrating.

missy 03-10-2010 12:24 PM

I'm sorry you're frustrated.... keep letting us know what is going on!


abatie 03-16-2010 01:41 AM

All of our appointments are now over and everything is great. It is such a relief to come home with good news. She doesn't have to go back to Rochester until July. The PM&R was really impressed that she is already scheduled to get services at home. He said that if we lived in MN she wouldn't be able to get services because she isn't delayed enough yet. In SD she is able to start getting services now because she may become delayed due to her medical conditions (she also qualified for speech because she was significantly delayed). I am thankful we are in SD. We have our IFSP meeting on Wednesday so we will see what they decide on services. Also, her hearing did come out low but we are going to have it rechecked in 6 weeks and then again in July. We will determine what will happen after we are sure we have a complete picture of her hearing.

missy 03-16-2010 01:38 PM

YAY!! All that sounds great!

Let us know how the IFSP stuff goes... that can be really confusing and difficult to navigate. Doesn't really have anything to do with VBF, but we like to keep in touch.

I'm glad things are turning around a little for your family. You have really been through the wringer, haven't you? I hope you find some time to relax a bit!


abatie 03-18-2010 02:48 AM

We had our IFSP meeting today. Becca will be getting services every week for speech and once a month from physical therapy for the next six months. They are then going to decide from there what we will do. They decided to start slow to see how she progresses because she has done so well with a little support on the feeding. I also found out that her hearing screening in April will be paid for by the program so that it doesn't go toward her insurance maximum. I didn't know that. I was also told that they would pay for the July eval. too but we will see because that may get tricky with Mayo. We will have to see.

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