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....