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)
-   -   San Francisco specialist-Any recommendation? (http://birthmark.org/board/showthread.php?t=4069)

Aolmstead 09-05-2010 05:09 AM

San Francisco specialist-Any recommendation?
 
We might relocate to the Bay Area. My daughter (15 months) has macro LM on the left neck. Can anyone recommend a trustworthy and experienced specialist in San Francisco?? I did general research through google and USCF popped up and they seem knowledgeable about LM. How about Stanford?? Any referral would be greatly appreciated.
Thank you.

Aolmstead 09-10-2010 11:16 PM

Anyone??? Does anyone know a good doctor in the Bay Area.

missy 09-11-2010 01:45 PM

Asking around.... will let you know if I find anything!

Missy

missy 09-12-2010 12:20 PM

Where are you moving from? From what I understand from Dr. Linda, Dr Levitin would be your best choice in California.

Missy

nickbar 09-21-2010 01:08 AM

Dr. Levitin practices out of L.A. Have you been to see Ilona Frieden at USFC?

Aolmstead 09-23-2010 08:19 PM

seeking SF Lymphatic Malformation specialist
 
Quote:

Originally Posted by nickbar (Post 20606)
Dr. Levitin practices out of L.A. Have you been to see Ilona Frieden at USFC?

Thanks Corrine for your recommendation for a physician in SF. I heard UCSF was very good. I looked her up and I'm not sure if she can do LM specifically??

http://www.dermatology.ucsf.edu/facu...edenIlona.aspx

I had the pleasure of speaking to Dr. Levitin in LA who recommended Dr. Vinuela at UCLA since my daughter (16mnth) needed to see an interventional radiologists.

At this time, my daughter is stable and will need an annual MRI to monitor the cycst in her chest bone. I'm just so nervous to do the 'wait and see' approach (since 6months old) and when we are ready to relo to SF, I want to ensure I have a specialist in line should something happen.

missy 09-24-2010 11:04 AM

When are you moving? Are you sure about SF or are other locations still on the table?

Missy

nickbar 09-24-2010 05:03 PM

Keep us updated! Good luck with the move

olivia 10-28-2010 06:25 PM

re: SF specialist for LM
 
hi there -
(Sorry for the misspelling and grammatical mistakes...typing fast here)
My daughter has LM (on her left cheek). we went to UCSF when she was 4 weeks old and had the MRI done when she was 8 months old. we were seen by their multidiscp team, including Freiden (dermatology) and Hoffman (plastic surgery). what we have found is that they are great for getting a multidisp view on the diagnosis of a birthmark, they are really NOT specialists in the area of LM. They see a lot of birthmark cases but really don't have deep knowledge of LM. You'll know this once you start drilling down on questions like how many pediatric patient under 5 have they TREATED (not just examined) with LM. what treatment did they provide, what was the outcome, etc, etc. The clinic is run by a dermatologist and operations provided by Hoffman (whose specialty is on clef lip / palate!). based on our research and many hours of conversations with experts in the field of LM, what we determined is that our daughter needs an pediatric ENT with experience in plastic surgery that specialize in vascular anamolies and lymphstic malformation. we went to also went to see the ENT folks at Mass Eye and Ear and Boston's Children's hospital...and talked with a couple of more MDs specializing in this field before going with Dr. Levitin (based in LA and NYC). He is amazing. My daughter (21 months old) just had her surgery last Friday (by Dr Levitin) and we're waiting for the swelling to go down...so far so good! we are really glad we did the research and found the right doctor who have actually done the exactly the same procedure (not just once or twice but 25+ times!). if you want to chat, you can always email me, Jean: jeankarnold@gmail.com we live in SF. good luck!




Quote:

Originally Posted by Aolmstead (Post 20413)
We might relocate to the Bay Area. My daughter (15 months) has macro LM on the left neck. Can anyone recommend a trustworthy and experienced specialist in San Francisco?? I did general research through google and USCF popped up and they seem knowledgeable about LM. How about Stanford?? Any referral would be greatly appreciated.
Thank you.


Aolmstead 10-30-2010 06:37 AM

Thank you-My reply to SF
 
Yes, I am on facebook but unsearchable. Are you?? maybe I can find you and see if I can invite you??
I have corresponded with Dr. Levitin (though not had the chance to meet him in person) over the phone and email on/off regarding consulting my situation with my daugher. He is very very nice and seems so knowledgeable and competent. The only problem I have is that I have HMO/HPN and living in Las Vegas, that they did not allow out of network to see him in Beverly Hills. I remember he offered to review Miley's MRI last year for free and gave us his recommendation. What a wonderful man; he did this out of his own time;

Our predicament is that we have to use our local resources first for a specialist or the BEST interventional radiologist to treat my daughter, Miley (16months). We tosses the idea even had confernece call with Dr. Shiels in Ohio who has a 99% success rate to treat macro/micro in 1 injection. He was so confident and kind to talk about his procedure and what to expect.....Realistically we won't be able to travel too far plus our HMO would not approve. I even thought of quitting my job and flying back home to Japan to obtain the OK432 but economically/financially it would not make sense.

Does Dr. Levitin actually do the surgery? Isn't he more focused on cosmetic aspect for these VM? I ask because we need an internvational radiologist to treat my daughter. I have confidence in his expertise but wanted to hear your experince.

My daughter has LM macro on her neck; started to swell up two weeks ago @16months since she got a cold; poor thing; I've never seen it so big; she did sclerotherapy with our ENT doctor (who was GREAT ) and is slowly healing; however the root of her cysts is deep down within her chest bone so we need to escalate this to interventional radiologist under ENT's recommendation. We are waiting for approval from HMO to approve the procedure. That is where we stand......I have alot of questions to ask the radiologist.....so far I have learned that every doctor has a slighly differnet method and I don't know which one to choose??? We have choices from 1) UCLA-who suggested percutaneous embolozation (but DR. Linda from VBF.com says DO NOT go through this) 2) Dr. Shiels -uses 1 injection to treat and kill the macro cysts-where as my ENT doctor says it was hard to believe and that Dr.Shiels method seems too agressive. The detergent being used would be painful for Miley; thus he does not recommend him 3) OK432 trial clinic in San Diego (but the doctor NEVER called me back) maybe it's not meant to be 4) local radiologist (procedure will use doxycycline which supposedly responded well in Miley when she did her neck area recently)

I have so many questions.....some FB families....say it's a lifetime maintenance upkeep for our kids that it's manageable but not cureable......we need to be careful for any little cold, infection they get......how often does the kids need these injectons?? Are you happy with the results for your daughter? I just do not want my daughter be taunted as she grows older in looking different......it breaks my heart...she's a wonderful happy little girl....sometimes outsiders can be judgemental and be cruel....I'm praying she is going to be treated with the right doctors.....

Any thoughts....I would love to talk to you...702-572-7308...Thanks for your support...God Bless your little girl and family....


All times are GMT. The time now is 04:58 AM.

Powered by vBulletin® Version 3.6.5
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.