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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   Recommendation for check list-when finding THE right doctor for LM (macro) (http://birthmark.org/board/showthread.php?t=4145)

Aolmstead 11-01-2010 04:16 AM

Recommendation for check list-when finding THE right doctor for LM (macro)
 
Is there a checklist we can refer to when finding a specialist to treat lyphantic malformations? What are the 'must have' experiences when finding one?

Through research, it looks like Dr. Levitin or Dr. Shiels would be my choice for my daughters (16 mth) LM macro on left neck, but our HMO does NOT allow 'out of network' and wants us to seek local medical resources FIRST.

We do have an interventional radiologist in Las Vegas (highly recommended by our ENT dr. who did the sclerotherapy on her neck) but needed to ask him 'specific' key questions with his approach on LM.

Can anyone tell me what I should be asking.....(other than the obvious ie. doctors experience, how many LM cases they've treated etc..)

Any advice?

sweet pea 11-05-2010 10:56 PM

Quote:

Originally Posted by Aolmstead (Post 20967)
Is there a checklist we can refer to when finding a specialist to treat lyphantic malformations? What are the 'must have' experiences when finding one?

Through research, it looks like Dr. Levitin or Dr. Shiels would be my choice for my daughters (16 mth) LM macro on left neck, but our HMO does NOT allow 'out of network' and wants us to seek local medical resources FIRST.

We do have an interventional radiologist in Las Vegas (highly recommended by our ENT dr. who did the sclerotherapy on her neck) but needed to ask him 'specific' key questions with his approach on LM.

Can anyone tell me what I should be asking.....(other than the obvious ie. doctors experience, how many LM cases they've treated etc..)

Any advice?

I would definitely ask about experience(#1 thing to ask) and also maybe ask to see before and after pictures, if they have any. I heard you are moving to SF, and UCSF tends to have a good team that you can use. I was going to use them before I found the specialist I use, though I live in Southern California. Not sure if you want to travel that far. If you really want to use a certain specialist, you may end up having to repeal the insurance company. Many LM families have to do this to get the right treatment for their child or for themselves. I know I have a few times in the past. If you have facebook, we have a whole network of LM individuals and parents. You can try to network through them. I think there is a girl who is in the SF area with LM, and she can tell you who she uses. You can search for the LM group, Lymphatic Malformation Awareness Group.

stlouispark 12-30-2010 06:26 PM

I too wish there was a checklist!
 
Since you posted this message in November, I would imagine this response will probably not do you that much good now. This is my first post to this site, as we just found out on 12/6/10 that the swelling on my son's neck that started on Thanksgiving 2010 is an LM. But I just wanted to share that when I e-mailed Dr. Shiels about doctors he might know and recommend in New York City, such as interventional radiologists and/or surgeons, he responded the next day to my e-mail. He did not know the several doctors I named in NYC, but he said that in our search for an interventional radiologist we should ask if that doctor is capable of treating the microcysts as well as the macrocysts, as our son's radiology report from ultrasound on 12/6 said the LM was of "complex cystic structure." Perhaps if you e-mail Dr. Shiels he might respond to your questions about searching for the right doctor. We continue to assess doctors and hope we will have chosen the right one/ones soon, as after my son's upcoming MRI on 1/4/11 we should know better exactly what we are dealing with; and will want to get it treated immediately as the LM lesion appears to be growing larger rather rapidly. I don't know what stage you are in right now with treatment for your daughter, but I wish you all the very best. Hang in there. This seems to be one of the most complex medical issues I've ever had to deal with, given that it is so rare and so varied from one individual to another...and each Children's Hospital in the USA seems very often to have a different specialty treating LMs (e.g., Hematology, Dermatology...etc). I'm extremely grateful that I found this forum. Patty

sweet pea 01-25-2011 04:29 AM

Quote:

Originally Posted by stlouispark (Post 22375)
Since you posted this message in November, I would imagine this response will probably not do you that much good now. This is my first post to this site, as we just found out on 12/6/10 that the swelling on my son's neck that started on Thanksgiving 2010 is an LM. But I just wanted to share that when I e-mailed Dr. Shiels about doctors he might know and recommend in New York City, such as interventional radiologists and/or surgeons, he responded the next day to my e-mail. He did not know the several doctors I named in NYC, but he said that in our search for an interventional radiologist we should ask if that doctor is capable of treating the microcysts as well as the macrocysts, as our son's radiology report from ultrasound on 12/6 said the LM was of "complex cystic structure." Perhaps if you e-mail Dr. Shiels he might respond to your questions about searching for the right doctor. We continue to assess doctors and hope we will have chosen the right one/ones soon, as after my son's upcoming MRI on 1/4/11 we should know better exactly what we are dealing with; and will want to get it treated immediately as the LM lesion appears to be growing larger rather rapidly. I don't know what stage you are in right now with treatment for your daughter, but I wish you all the very best. Hang in there. This seems to be one of the most complex medical issues I've ever had to deal with, given that it is so rare and so varied from one individual to another...and each Children's Hospital in the USA seems very often to have a different specialty treating LMs (e.g., Hematology, Dermatology...etc). I'm extremely grateful that I found this forum. Patty

Well if you are looking for a doctor in the NYC area, I highly recommend Dr Waner. He has a lot of experience and great results for treatment of LMs. http://vbiny.org/ ... a link to his page.


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