Vascular Birthmarks Foundation Forum

Vascular Birthmarks Foundation Forum (http://birthmark.org/board/index.php)
-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   LM resection with Dr. Waner (http://birthmark.org/board/showthread.php?t=1537)

jacquismom 08-10-2005 09:13 AM

LM resection with Dr. Waner
 
Hi - Nice to see this new board here! My daughter has a macrocysitic LM and is slated for surgery with Dr. Waner this December (her story is posted on the My Story board). She has had five rounds of sclerotherapy with OK-432 that were moderately successful. Dr. Waner believes he will be able to successfully remove the remainder of her LM. I was wondering if anyone has had a child go through this surgery. I would love to hear a parent perspective on what to expect.

EmmaLeighs mommy 09-03-2005 06:14 AM

Re: LM resection with Dr. Waner
 
Hello,
I have to say as though I am not familar with the resection with Dr. Waner, but I did want to comment.

My daughter was born with a hemangioma and is dx with PHACE syndrome so I have been through some of what you have been through. But....just recently I had decided to go back to work as a nurse. I read an ad for a home health care nurse and knew that I had to apply.

I trained today on the case at University of Iowa, come to find out.....the baby was also born with a cystic hygroma. Small world with it being in my world and to read your posting today. You can be sure that I am going to tell mom on Wed. to check this board and to also contact Dr. Waner for tx and help.

I would greatly appreciate any and all information that you would be willing to share with me as I am now getting ready as a nurse (I read your story too) to take on this case.

Thanks a lot
Nikki

jacquismom 09-28-2005 12:11 AM

Re: LM resection with Dr. Waner
 
Hi Nikki -

Sorry it took me so long to get back to you - we have had a really crazy month! I would be happy to answer any questions that I can for you regarding lymphatic malformations as well as any questions that the parents of the child you are taking care of might have. Lymphatic Malformations are quite a bit more rare than hemangiomas so its a little harder to track down information on them.

After making this post, I was contacted by a group of parents on a lymphatic malformation support group on Yahoo. The site is: http://health.groups.yahoo.com/group/lmsupport/ . There are a number of families on this site with children with lymphatic malformations with their stories and even some photo albums (Jacqui has an album on this site too). Many of them have been seen by Dr. Waner for surgery.

This is an excellent resource as well as a very supportive group of parents. I would highly recommend that the family you are working for take a look. I wish we had known about sites like this when Jacqui was first born. There is also a much larger LM support group on MSN at http://groups.msn.com/vascularbirthm...t/general.msnw .

Hope this info is helpful for you and if you have any specific questions, don't hesitate to ask me. I will do my best to track them down for you.

Michelle

karensupermom01 06-13-2007 07:34 PM

Lymphangioma surgery
 
Quote:

Originally Posted by jacquismom (Post 8213)
Hi - Nice to see this new board here! My daughter has a macrocysitic LM and is slated for surgery with Dr. Waner this December (her story is posted on the My Story board). She has had five rounds of sclerotherapy with OK-432 that were moderately successful. Dr. Waner believes he will be able to successfully remove the remainder of her LM. I was wondering if anyone has had a child go through this surgery. I would love to hear a parent perspective on what to expect.

I have a 15 year old daughter who will undergo surgery in her upper left arm for a lymphangioma in two weeks. Her first surgery was at six months old, but the surgeon was not able to excise the entire tumor. Two years ago she underwent three rounds of sclerotherapy with minimal success. Compression garments have been of little use. The doctor is not sure how much he will be able to excise, but we are hoping for the best. My daughter is very self-conscious about her condition and rarely shows her upper arm. Hope your surgery goes well. Please let me know.

jacquismom 07-23-2007 10:11 AM

Hi-

I'm sorry to hear all that your daughter has been through and I hope the surgery went well for her. Jacqui had her first surgery with Dr. Waner in November of 2005 and had a follow-up sugery for cosmetic touch up in November of 2006. He was able to remove the entire LM - an 8 hour surgery. We were amazed at the results! She is doing really well now and has no surgeries scheduled in her immediate future. I believe with my whole heart that we made the right decision to take her to New York. I know Dr. Waner focuses on malformations of the head and neck, but you could probably obtain an excellent referral to a specialist dealing in upper extremities through the parent's "Ask the Surgeon" link on this site to Dr. Levitin. He is Dr. Waner's partner and an excellent parent resource! My prayers are with you and your daughter.

Michelle

LilyGrace23 06-19-2008 09:17 PM

Michelle,
thank you so much for all your information, support and your daughter's story. Until last week I didn't realize there were so many people facing similar situations to us. My son was diagnosed 6 yrs. ago with multiple lymphangioma's. through out his rib bones, one that is behind his left lung and is slightly longer than his left lung and 2 in his spleen. we find out tomorrow at boston children's if there could possibly be 2 more in his esophogus.... 6 yrs ago there was no information on the internet and it is a comfort and relief to have all these families come together and be able to talk about there experiences and share information....Thank's to all of you and God Bless!!!


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