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  #1  
Old 01-27-2003, 07:37 PM
momof6kds
 
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:-[ I know this is not the right place to post this but for the life of me I just cannot find a board with something similar for me to post. If you have any ideas please let me know! Otherwise would it be OK for me to post here for some much needed support?

OK let me share my story with you.... It's a little long one so stay with me. I have a 6 year old little girl (Megan) who was born with something on the back of her neck. I had taken her to 3 pediatricians and they all told me that what she has was called a Hemangioma and that it would go away... even though Hemangiomas are usually red and hers were clear. I thought well..... 3 DR's looked at it so they must be right??? Right??? Nope! When Meg was 4 the blister like things on the back of her neck started growing and a few of them turned black and hard so I made an appointment to see a Dermatologist. I was shocked at what he would tell me. Meg has something called Lymphangioma Circumscriptum. LC is a genetic defect that is very rare and is a defect with her lymph node. The little vesicles were filled with lymph fluid. He told me to go see a pediatric Dermatologist and since there is only one in AZ we had to drive from PHX to Tucson to see him. A few weeks later we were in his office where he didn't have much info to share with us. He told us that LC was not life threatening but that she would have to have surgery to have it removed because the roots were very deep....anything other than that and it would just grow back and that they are usually not cancerous. He could not tell me how it would grow or when it would grow or even how big they would get because since it is so rare not much is really known about it. He told us to go home and come back in a year and he would again look at it. About 6 months went by and that is when we saw them start to grow and change and become black and hard. So I again called her Dermatologist who told me to come in for something called Grand Rounds where 10 Dr's looked at her and would collaborate on what to do. After the DR's talked it was determined that she needed to see a plastic surgeon to have it removed and gave me the names of a few. When we returned home from Tucson I started making phone calls to find a DR who had actually delt with this kind of tumor before and only one on the list had. I called his office and made an appointment in 8 weeks. Because he is a high profile DR and that is how far they were scheduling out. We took her in to see DR Beals and he agreed it needed to be removed and made an appointment for the surgery in 3 months. Last May my baby had surgery to have it removed and now has a huge 6" scare on the back of her neck and pathology came back fine. It has now been 8 months and her tumor is starting to grow again. Meg has a few little vesicles and seems to have more every day. They are growing back in the same place as before and right in the scare from her surgery. In fact she has one scare that is like a line that has about 8 little vesicles forming on it and it is red and puffy. I called DR Beals office to have her seen and was given an appointment of Feb 12th so now we play the waiting game again. When I made the appointment and talked to DR Beals nurse she said "are you sure it's the tumor and not just scare tissue? Because they usually don't grow back" I said yes IM sure they are the same clear vesicles she was born with and they are growing every day. I asked, could he not have gone deep enough during her surgery? The nurse said that yes or that it might not have been well defined enough for him to get it all. So now we play the waiting game GRRRR. IM sure she will have to have more surgery and my heart just breaks for my beautiful little girl having to go through that. But, it's the only way.
Anyway just saying hello and asking for some much needed support.
Hilary



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  #2  
Old 01-28-2003, 10:42 PM
Lindseys mom
 
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Hilary,
My goodness, what an ordeal! I certainly hope that everything goes well with your next appointment, and that something can be done to permanently solve this problem for your little girl! I don't have any suggestions on how to deal with this, other than to keep on getting her the help that she needs! You are already doing that, and I'm sure she is grateful to you for that.
Good luck!
Liz
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  #3  
Old 01-29-2003, 07:41 AM
mamalamb
 
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Hello Hillary,
Wow, what a story. I have heard of this condition and actually believe someone on the parentsplace birthmarks forum came by with the same type of lesion.
They are considered vascular tumors, so this would definitely be the place to be for some support.

I would assume that you saw Gerald Goldberg in Tucson. He is the best derm in Arizona. I have no idea about plastic surgeons.

I would consider a second or third opinion. At this point, you might wish to call/try Dr. Waner in Arkansas.
At least give them a call and see if you can set up a phone consultation or something via email.

What I know about them is they usually appear in infancy, but can show up at any age. In lesions present since infancy, the superficial lymphatic malformation may communicate with deeper cavernous lymphatic spaces and a simple excision of the superficial portion may not be sufficient to prevent recurrence. Lymphangioma circumscriptum has a high recurrence rate after excision because of its deep component. Lymphangioma circumscriptum can occur in conjunction with cavernous lymphangioma and cystic hygroma.

I would guess the dark black color would be considered the presence of red blood cells or hemorrhage? If so, the presence of red blood cells might means it is not a simple malformation of the lymphatics, but a mixed malformation made up of lymphatics and blood vessels.

It is recommended that an MRI be done before treating to determine if underlying musculature is involved. An MRI can define the degree of involvement and the entire anatomy of the lesion. An MRI can help prevent unnecessary extensive, incomplete surgical resection, because of the association with a high recurrence rate.

Immunohistochemical study is useful in differentiating lymphangiomas from hemangiomas in difficult cases.

Treatment modalities for this type of lesion would be surgical excision or CO2 laser, but both have drawbacks with recurrences. The preferred treatment for lymphangiomas is complete surgical excision.

On the basis of the Whimster hypothesis, the large subcutaneous cisterns should be removed to prevent the lesion from resurfacing.

Adequate excision of lymphangiomas can be difficult and, at times, unfeasible. This problem is the main reason for the high recurrence rate.

Tumors that are confined to the superficial dermis are more amenable to surgical excision, which is associated with a high rate of success.

The use of other treatment modalities has been advocated; these include cryotherapy, sclerotherapy, and cautery.

Vaporization with a carbon dioxide laser has been tried with good results.

Rarely do cutaneous lymphangiomas interfere with the well-being of patients. Patients are expected to live a full healthy life, and they usually seek medical intervention because of cosmetic reason.

Lymphangiomas represent hamartomatous malformations with no risk of malignant transformation.

In the case of cystic hygroma, total surgical excision is appropriate to prevent complications such as respiratory compromise, aspiration, and infections in critical areas, such as the neck.

Lymphangiomas have a strong tendency for local recurrence unless they are completely excised.

Recurrent episodes of cellulitis and minor bleeding are not uncommon.

The plastic surgeon may or may not have any experience with the CO2 laser. It is a powerful laser and should only be used in the hands of the very experienced. I'm certain that Dr. Goldberg could let you know who has that experience. He is a laser specialist so he could advise.

You proabaly already knew all of this, however possibly others who come by might understand the condition a little bit better.

Best wishes on helping your precious angel and please keep us posted.
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  #4  
Old 01-29-2003, 01:12 PM
momof6kds
 
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Wow that was some great information. We did not see DR Goldberg but I know of him. We actually saw one of his associates who only works with peds cases and darn if his name doesn't escape me right now GRRR. We ended up seeing the head of (I know IM going to butcher this word LOL) nasocranial institute in Phx and that DR was Stephan Beals. You know I begged and begged for all of them to do an MRI but they all said that it is a soft tissue tumor and wouldn't show up on the picture. As far as it returning Why in the heck did nobody tell me this? I asked about it and all everyone ever told me was that there is always a chance.... Like it was no big deal. We opted for surgery because since she was only 5 and already had them up and down her neck ending just into the hairline and were becoming painful when they hemorrhaged and covering a large area in her neck. Pathology came back showing not only the Lymphangioma but also Angiokeratoma (vascular). When Meg came out of surgery her DR did say that it was very well defined! So why is it coming back? Is it time to see a new DR? Sigh I just want this to be over with. Thanks so much for your reply
Hilary
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  #5  
Old 01-29-2003, 11:54 PM
mamalamb
 
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Wow, I don't know what to say. There is a lot of information out about this condition and it all states there is a high return rate and all suggest doing an mri before treating. How could a doctor decide how defined it is w/o the tests?

I would find a different doctor, two, or three to at least consult. Of course that is just my opinion. I know it is difficult and can be costly, but worth it for your child. Right now we are going over 1700 miles for treatments for my child and that happens every 10-12 weeks.

Don't give up, educate yourself as much as possible, and ask questions. Find a doctor with whom you are very comfortable with. One clue is the nurse who told you they do not usually grow back, when the info says that is very common for them to come back if present in infancy.

Possibly some of the information I provided will help you in your quest to find someone who can give you all the information so you can make the best decisions.

Keep me posted.
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  #6  
Old 02-26-2008, 03:54 PM
Jodi T. Jodi T. is offline
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Hilary,

I am just joining this group now and noticed your post. How is your daughter doing? We were just told yesterday that my six year old daughter has Lymphangioma Circumscriptum after years of treating "irritated dry patches" of skin on her lower back. I would love to talk more. Any helpful advise would be really helpful.
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  #7  
Old 03-02-2008, 04:41 PM
Rachel06 Rachel06 is offline
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Hillary - I am not trying to push info on you - as several facts about this rare condition have been posted to you and they have educated me too. I am first and foremost wanting to offer up support. How frustrated you must be and scared and confused. I want to extend to you my e-mail sherrirfoster@sbcglobal.net for a private discussion if you are interested. Dr. Waner was mentioned above and he is actually in NYC now - but he has a great team - including Dr. Berenstein. I have some personal contacts there and would love an opportunity to help you if I can. I am a mom of a hemangioma baby - quite extensive - and although my ordeal does not span the years that yours has, my heart always aches for a mom with uncertainty and a feeling like they have not received quite the accurate help. We went through several "specialists" before arriving in New York. I really think that you could benefit from an e-mail or phone calls. I hope you take me up on that offier - but if you do not, I understand that too. I wish you well and your search for your daughter's best treatment and I hope to visit with you soon.
Hang in there - our dedication to finding the best possible care for our children is what makes us special parents. Your daughter is truly lucky to have you. Don't forget that.
Sherri Foster
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