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-   -   Rare form of lymphatic malformatiions can anyone relate (

LilyGrace23 06-13-2008 03:00 PM

Rare form of lymphatic malformatiions can anyone relate
I am new to this site so If anyone can give some support or if anyone has been through something similar please let me know!!!! until this website I thought I was alone with this. It has been a long 8 years with no answers and no support. thanks to all who read this!!!!

I have a very beautiful son named Kaden who is 8 and was diagnosed with lymphatic malformations at 2. He was 5 weeks premature and he had pneumonia and his left lung collapsed shortly after birth. The doctors did an ultrasound of his abdomen and saw 2 tumors in his spleen, they seemed confused by this but blew it off. Shortly after I got him home he started getting pneumonias every 4-6 weeks, he was having a hard time gaining weight and he threw up this thick white mucus all the time. the doctors looked at me like I was crazy but I knew there was something wrong. The week before Kaden's first birthday they found a huge tumor behind his left lung, they did an MRI and told us he had cancer... He went in for surgery and they removed about 6 pieces of this tumor laproscopically and did bone marrow testing. a few hours later the surgeon came in and said it was a miracle it wasn't cancer after all but a lymphatic tumor. What does this mean? so for the next year Kaden didn't get any better and the pneumonia's were still happening and he was just so sick all the time. Finally a nurse practitioner, thank God for her, sent us to a specialist who sent us to Boston Children's. His symptoms mimicked Cystic Fibrosis, so we did genetic testing for that and it was negative, he had some other tests and finally they took his case through the vascular anomily (not sure about the spelling) clinic at boston children's. there he was diagnosed with lymphatic malformations, I don't even know what form of it he has. they told me it was the rarest case they had seen because it was all internal, tumors through out his rib bones too many to count. he has 2 tumors in his spleen and 1 huge one behind his left lung. They ordered a Cat scan last week to compare it to the ones he had 5 years ago to see if there were any changes. We got a phone call monday and the radiologist report says it looks like there are 2 new lymphangiomas in his esophogus.... so I'm trying not to worry to much until our appt. at boston children's next friday..... God bless to all!

sweet pea 06-17-2008 08:47 PM

hello. welcome to the group. I'm glad to hear you're going to children's hospital Boston. They have a great vascular anomalies clinic. There aren't too many cases of people with multiple lymphatic malformations, but there are some. They sometimes refer to it as Lymphangiomatosis(I think). Just meaning that there are lymphatic malformations in multiple areas. Good luck with the appointment and everything.

LilyGrace23 06-19-2008 08:47 PM

sooooo nervous
Thank you for writing back!!
I am so scared and nervous right now. On the one hand I can't wait for tomorrow's appt. on the other I am scared there will be bad news. I need more information and answers and hopefully we get that.
thanks to all who read this and please keep us in your prayers.

LilyGrace23 06-27-2008 12:39 AM

We went to the appt. in Boston. This day is truly a miracle...
First the radiologist came in and told us he couldn't see any of the tumors in Kaden's rib bones that were previously there, the tumors in his spleen were still there but maybe smaller, he has one new growth in his pelvis but it was very tiny, he couldn't tell if the tumor behind his left lung was still there because it was very difficult to see but if it was there he thinks it is smaller. The 2 new tumors in his esophogus were very tiny... I sat in shock and couldn't believe what I had just heard. when the radiologist left the room I looked at my husband and asked him to repeat what he just said because I wasn't sure I heard him right (he had a very thick accent)
The Dr. came in a few minutes after that and told us most of the tumors had shrunk up and that the tumors in Kaden's esophogus were in his soft tissue and were tiny, about a centimeter. I asked if it was normal for the lymphatic malformations to shrink up like that and he said no they usually get bigger but every case is different. I burst into tears, I was so grateful at that moment and just couldn't believe after everything we had been through the past 8 yrs. it looked like there was a positive. I felt like we had been blessed with a miracle.
We will go back in 5 yrs and get another CT scan to compare with this one, as long as Kaden is symptom free.
I hope our story gives hope to others. thanks to all who read this and may God bless all of you and your children. Don't ever give up hope... Miracles do happen!

Cederløv 07-06-2008 12:40 PM

I don't want too kill your happiness,, but is very often the go big and small again and so on... it"s happened very often whit my son.. inside this thing is water and is very normal to go up and down.. Normally they go up.
And they can be infected and can also bleed, then they grow very much.. and after that, they can go away if we are lucky.
But never give up!.. some day they will find something to take this away
Best Regards Kurt

LilyGrace23 09-25-2008 02:39 PM

Has anyone else had any similar situations. all the information I can get is truly helpful. this is the best my son has felt and he is now 8 and hasn't been sick in a while. I haven't really gotten any answers or even talked to anyone with a similar situation. thank you all and God bless.

justfuz 09-25-2008 10:41 PM

Our daughter was diagnosed with LM at 9 months, she is now 3. She was born with it and it wasn't until we saw a dr at Mayo Clinic that we knew what it was. The location of hers is on the right side of her face, from her hairline to her mouth. She also has a cystic nodual in her cheek. Plus the roof of her mouth is lined with it. She has had 1 CT and 5 MRI's to continually monitor it. Due to my insurance coverage of "out of network" being 20% more than in network, we went up to UW Madison. Within the past month we just found out that her right eye has only develloped 9 months along, so now she has to wear a patch on her good eye for 6 hours and glasses all day. They are not sure if this is caused from the LM or what. We have an apt. to see another vascular specialist in Milwaukee next month. Last nite she was complaining that it was hard to swallow and her throat hurt. I took a look and the top of her mouth was black and pusy looking. My wife and I didn't really sleep lastnite, worring that it was swelling up. Saw a dr today and were told that she must have scraped the roof of her mouth and opened the lm up, causing it to bleed and get infected. So now, she is on a soft food diet in an attempt to let the roof heal. We want to go back to Mayo but not sure or just wait to see the other dr next month. Its so hard with the lack of answers but, as I've been reading, they're really are not any. Our current focus is just to monitor and see what it does.

sweet pea 09-25-2008 11:37 PM

LMs tend to swell and then go back down(sometimes). So it wouldn't be uncommon for it to swell back up again. I tend to consider LMs like weeds, very hard to get rid of and very pesky. haha. Though it is manageable and your son can live a normal life or close to it anyways. It all depends on the severity of the case. Anywhere you go, there really won't be a lot of info, since many doctors are somewhat baffled by the condition and don't everything about it. I never had problems with mine until the last year or so with severe pain. But I had surgery a few months back and am now pretty much back to normal. Really all you can do is to keep it under control and watch for changes, making sure nothing is too bothersome to him.

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