diagnosis and treatment of Abdominal Lymphatic Malformation - Vascular Birthmarks Foundation Forum

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Old 07-14-2010, 11:05 PM
AbdLM AbdLM is offline
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Default diagnosis and treatment of Abdominal Lymphatic Malformation
My 4 yo daughter recently was diagnosed of Abdominal Lymphatic Malformation. But according to the doctor, it is not a 100% sure diagnosis. Other possibilities include mesenteric cyst or duplication cyst. Ovarian cyst is also possible but very unlikely.

Both ultrasound and MRI have been done. Is it unusual that there is no definite diagnosis even with ultrasound and MRI? Did most people get a definite diagnosis with LM?

Even though the doctor is not 100% sure, but I guess that it is most likely LM.

I did some online search and found the paper from Dr William Shiels at Nationwide Children's Hospital in Columbus, Ohio. From the paper, it seems that percutaneous sclerotherapy is very effective and recurrence is very rare. Currently I am thinking to do percutaneous sclerotherapy as a first choice. Anyone had experience with Dr Shiels or Nationwide Children's hospital?
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Old 07-15-2010, 11:15 AM
missy missy is offline
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Hi and welcome!

Sorry to hear about your daughter... must be very stressful. In addition, I can't think of one single person with that diagnosis, and I've been here more than 10 years now.

What I mean is that I don't think you are going to find your answers here. I will copy your message and send it to Dr. Linda and see if she can think of anyone who could help provide you support. She has a mind like a bear trap for that stuff!!

Missy
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Old 07-15-2010, 10:11 PM
AbdLM AbdLM is offline
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Default which specialty should I see for better diagnosis?
Which specialty should I see for a definite diagnosis of Lymphatic Malformation in the abdomen? I am thinking of interventional radiologist, pediatric surgeon, or some other specialty?
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Old 07-16-2010, 02:40 AM
missy missy is offline
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Dr Linda has a recommendation for you. Can you email her directly at hvbf@aol.com or get in touch with her through the ask the expert page at http://birthmark.org/experts.php She can help you!

Missy
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Old 07-24-2010, 02:51 AM
hernandezrosella hernandezrosella is offline
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Hi not sure where to ask this question but am very confused. Went to a couple of ENT Dr. Had an CT scan and a MRI they say I have vascular malformation in my right cheek and probably was caused when I got hit by a car 18 years ago and just now just showing swollen when I use pressure bending and ect very uncomfortable and tender. I have been reading this is an birth thing I was never told I had this from birth. The first Dr told me they could remove this threw surgery but because there more than one he send me for a second opinion now this one told me that vm and to try radiation first if not then yes will have it removed. I have the MRI disk and reports. Make an appointment with another Dr to see what he says. So very confused the mri says its a cyst with fluid.
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Old 07-24-2010, 11:29 AM
missy missy is offline
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A vascular malformation is different than a hemangioma. They are NOT always present at birth. It may very well look like a fluid filled cyst to the guy reading the MRI.

Missy
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Old 07-24-2010, 01:28 PM
hernandezrosella hernandezrosella is offline
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Default RE
Thanks. What kind of treatment do they normally do. I have been researching but have not came across any cases like mine.
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Old 07-25-2010, 05:33 AM
missy missy is offline
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Usually just what the doctor recommended, I think. Is your diagnosis strictly "venous malformation" or is there some other involvment?

Missy
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Old 07-27-2010, 07:55 PM
hernandezrosella hernandezrosella is offline
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Well went for 3rd opinion and he is sending me to another Dr.

This is what it says on my MRI

Multifocal multiloculated cystic lesions in the right masticator space with presence of fluid-fluid level. The Imaging characteristics are compatible with Venolymphatic Malformations. I have 4 of them in deferrent areas of my right cheek inside.

In finding its state size and area's ect.
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Old 07-30-2010, 10:38 PM
hernandezrosella hernandezrosella is offline
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ok Dr is thinking Sclerotherapy or the Coil treatment. He did say this looks like I have all way had this. Whats to do another MRI to see if its fluid or blood vessels. Surgery is out of the question. It would do more harm than good to my nerves I could look like I just had a stoke. I surely don't want that. Does that make since. I read its mostly in children and young adults why did mine show up late am 47 well to be noticeable. Well thanks
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