Looking for answers (Lymphangioma)

Sequenzia · #1 11-05-2009, 08:56 PM

Hi All,

I am very glad I found this form. I have already emailed this same question to Dr Edmunds who is listed as an expert on Lymphatic Malformations but I wanted to put it out here on this form to see if I can get some feedback.

2 weeks ago a pretty large mass showed up in the temporal area of my daughter's head/face. My daughter Scarlett is 27 months old and appears perfectly healthy.

We immediately brought her into to see her pediatrician and he ordered a CT Scan. All the CT scan really showed was that her brain is fine and she has a mass in her left temporal area. So the pediatrician recommended we speak to a pediatric neurologist which we immediately did. The neurologist looked at the CT scans and recommended that we speak to a plastic surgeon because of the location of the mass. We met with a plastic surgeon the next day and he ordered a MRI. Today we got the MRI results and met with the plastic surgeon. The MRI report stated that it appears to be completely benign and the closest the radiologist and the plastic surgeon can come to a diagnosis is Lymphangioma but they cannot give us a hard diagnosis. At this point the plastic surgeon wants us to bring her back in 4 weeks to see if it changes. He also said if we want we can see a pediatric oncologist just to be certain it is benign. We have already made a appointment with he oncologist for Tuesday.

My question to you is how can we get a concrete diagnosis? I really am not comfortable waiting 4 weeks to just see if it grows when they cannot tell us for sure what it is. As parents what should we do? Is there a better specialist we should be seeing other than a plastic surgeon? Should they be able to give us a firm diagnosis based on just the MRI?

Any help that you could give us would be greatly appreciated. We will do whatever we need to make sure she is healthy we just need to know what we should be doing.

Thanks in advance for any help.

-Steve

missy · #2 11-06-2009, 01:50 AM

Getting a firm diagnosis for some vascular birthmarks can be really difficult.

Do you know if the MRI was done with contrast?

If you need your concerns forwarded around to some other doctors, let me know. Corinne takes care of that, but I'll get her in touch.

Welcome!

Missy

Sequenzia · #3 11-06-2009, 02:48 AM

Hi Missy,

Thanks so much for responding. It is great to have a place like this to get help.

I honestly am not sure if the MRI was done with contrast or not. I asked this question before the MRI and I was told that it was up to the radiologist whether or not contrast was going to be used. I have not been told either way if it was used. I will inquire about this though and I am going to try to get a copy of the MRI report from the hospital.

I would love for you to forward my concerns to anyone that can help. My wife and I actually have other questions as well.

The plastic surgeon that has been seeing our daughter seems like a really good doc and I am sure he is really good at what he does but I am not sure if he has enough experience in this to really diagnosis and treat it. I really just don't know. I also don't want to just wait 4 weeks to see what it does. I really want to take a more proactive approach.

My wife and I will do whatever we need to do to make sure our daughter gets the right treatment; we are just not sure how to do it.

Thanks again and any other help you can provide would be very very appreciated.

-Steve

missy · #4 11-06-2009, 11:07 PM

Hi Steve,

Tell me where you're located and I'll send all the information to Corinne and she can direct you from there.

Missy

Sequenzia · #5 11-06-2009, 11:08 PM

I am located in Orlando Florida.

Thanks!

jmills · #6 02-17-2010, 03:18 AM

Steve,
I don't know if you have found a solution yet. I would encourage you to look at this paper by Dr. Shiels.
http://174.120.2.174/pdf/LymphaticMa...nTreatment.pdf
My daughter has had a LM since birth on the left side of her neck. She is now 10 years old. She was treated by Dr. Shiels in Jan 2010. We can see immediate results within days. She was treated with OK432 when she was 2 years old. Dr. Shiels will look at your MRI and consult on phone with you.
John

Sequenzia · #7 02-18-2010, 03:34 AM

John,

Thanks for the reply.

We have been working with a specialist in Miami but my daughter's mass has been going down on it's own. We are just watching it closely to see what it does. It has decreased by probably 75% of its size without any treatment.

Her mass is not in a place that is affecting her so it seems the best thing to do is keep watching it.

Thanks for the info though. That document is very helpful.

-Steve

jmills · #8 02-20-2010, 02:48 AM

Steve,
That is great to hear that the cyst is getting smaller. I know that is a stress reliever for your family. I have been through similer circumstances as you. My daughter is now 11 years old and was born with a (LM) Lymphatic Malformation on the left side of her neck, which we did not notice until she was about 1 yo. Did you get a hard diagnosis yet?
John

Aolmstead · #9 03-16-2010, 03:34 AM

I can share the same sentiment with everyone else.....I too was shocked to see our daughter who was born healthy and normal at birth, get a large mass on her left neck after picking her up at day care...It was a surprise to us...I believe weeks prior to the mass, she contracted RSV from day care and was very very sick...this may have triggered an infection thus the LM mass......

We live in Las Vegas and willing to get a second opinion on her condition. We want the best treatment for her. We spoke to Dr. Levintin who was very helpful.

Just curious about the article below. Please tell me more about Dr. Shiels. Can he cure what my daughter has??? I heard that LM is not cureable but manageable and controllable IF we time it right.....Can my daughter live a normal life??

jamielyn · #10 04-13-2010, 06:46 PM

I am so glad that I just read this. I have had lymphangiomas my entire life. I had one large one removed from my neck as a small child. I can not get a concrete diagnosis on these two masses that I currently have. I just don't know where to turn or what to do anymore. I do not want to have surgery if that is possiable. Also would this be considered a pre-existing condition? I don't have much money. I am also in pain because of where they are located. Please help.

Jamie-Lyn Watmuff
jamiewatmuff2@allstate.com