Surgery at Kaiser? - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 03-12-2008, 06:55 AM
lovemybaby lovemybaby is offline
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Default kaiser question

[

my son has an H on his forhead (I think). Wea re with Kaiser in the SF Bay Area. I am wondering how your surgery went and what you would reccommend for a Kaiser member to do in terms of getting best treatmetn.
Thanks,
Mariah
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  #12  
Old 03-14-2008, 04:39 AM
nickbar nickbar is offline
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Mariah. I would ask your physician about experience s(he) has personally treating/evaluating hemangiomas. They are common, so you doctor may have seen a lot of them...but put together a list of questions you have that also might give you a clue to how much your doc knows about tx.

If you at any point feel you need another opinion outside the network...there are ways to do so and be covered. I do know of someone from my area that had approval by Kaiser to pay for surgery with a doctor out of network...and a well known surgeon with a lot of hemangioma experience (in L.A.)

Corinne
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  #13  
Old 03-16-2008, 01:39 AM
lovemybaby lovemybaby is offline
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Default grateful for help

Hi Corinne,

Thank you for your reply. I am anguishing over the strawberry mark that is growing on my 7 wk old son's forehead. It appeared at about 1 and a half week old as what I thought was a "scratch" then maybe a rash. When I called Kaiser advice nurse she said "Just watch it", gave me no other information, and was quite uninterested in discussing it with me. Upon my Internet research I started to piece together that this is a vascular birthmark, most likely a H. I came upon this site and have been reading/researching whenever I get the chance (I have a 4 yr old, 2 yr old, and newborn) in order to get the scoop on what the best thing is to do. My heart goes out to those parents who have watched these "birthmarks" take over their beautiful sweet babies' faces/bodies. It is heartbreaking and I find myself in tears daily but bracing myself for what could lie ahead. Thank you so much for being there...I see you have offered help to a lot of people.
I have been taking pictures and waiting for my husband to get home (traveling) to help me upload them so I can send them to the doctor on this site and see if there is any use for me to take action. My concern is that this may be a compound H. There is a growing bright red bumpy surface mark (shaped sort of like Japan) but also a whitish halo around it and a bluish/purple tinge underneath that. The red part has grown and become brighter/deeper in color/puffier it has feeder type capillaries coming from a main center spot. It looks like he bumped his head and it is bruised with a red gash on top of that. It feels slightly raised (Puffy?) and looks very slightly raised (like a bump) but it is not a definite dome (like the cavernous type). Do you know when it will become diagnosable as to whether it is cavernous or not (I read that type may not grow till 2 to 4 months old). He also has a blue spot under his skin between his eyes (my daughter had this and it never turned into anything...I never had it looked at, thinking it was just a vein).I have a doctor apt scheduled with his primary physician Dr. Hassler at Kaiser, Walnut Creek, CA on April 7th. I was trying to prepare for that and I read somewhere that there are some info sheets on this site for educating/updating physicians (if needed). I have not found them yet. I think I probably need to ask what specialists are available through Kaiser and what course of action may be available if it continues to grow, etc. My impression is that they will do nothing until a case becomes extremely disfiguring/threatening. I am so afraid they are just gonna dismiss us and send us home to wait. I just do not want to miss out on an opportunity to treat this early if there could be beneficial results (smaller may be easier to treat (ie less laser treatments/smaller scar) rather than live with the fear and upset for potentially years to come (up to 10 years!?).
We can go to LA if needed, but I saw a name in San Francisco on the physician list...would you reccommend someone in particular. I really want to go to someone who is more knowledgable/experienced than our Primary...depending on if Dr. Lavine (??not sure idf he is the one on the site) reccommends me to pursue it.
Sorry this is so long. I have had no one to talk to and I cant get it off my mind. There is a lot to sift through to get educated on this and understand what I should do. I appreciate whatever advice or guidance you offer. I will try to send the pics tonight. Thank you so much for your response.
Kind regards,
Mariah
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  #14  
Old 03-16-2008, 02:01 AM
lovemybaby lovemybaby is offline
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Default will message dr waner

I meant I will send a pic to Dr Waner (not Lavine) and to this thread. I have yahoo...hope it works.
thanks,
Mariah
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  #15  
Old 03-16-2008, 07:45 AM
lovemybaby lovemybaby is offline
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Default bumbling through this forum

Hi,
Thanks for your help. I am sort of bumbling my way through trying to figure out how to use this discussion forum/site. I am not srue how to message you privately and ws not able to attach pic to email through this site. Sorry everyone for including all this in the thread.
I sent an email to Dr. Waner with this picture. The pic does not show how rough and puffy and deeply colored the red splotch has become in the past couple of days. Well, here we go...well, it failed. Guess the file was too big and I do not know how to shrink it for now. Sorry! I'll figure it out later.
Mariah
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  #16  
Old 03-16-2008, 01:30 PM
missy missy is online now
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If you will send the photo as an attachment to contact@birthmark.org, I'll shrink it for you and stick on this thread!

Missy
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  #17  
Old 03-20-2008, 12:48 AM
nickbar nickbar is offline
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Hello Mariah,

You can contact me via email at vbsupport@comcast.net

If you would like another opinion within your area, I would recommend Dr. Frieden in in SF. She has extensive experience with hemangimas and can diagnosis the type for you. I would also recommend you email Dr. Levitin. from this site for an opinion too especially if you can provide pictures. We can talk more via email if you would prefer.

Corinne
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  #18  
Old 03-20-2008, 12:50 AM
nickbar nickbar is offline
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Also here is information you might want to share with your doctor. http://www.birthmark.org/treatment_options.php

Corinne
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  #19  
Old 03-22-2008, 01:53 PM
missy missy is online now
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Default Here is your photo!

Thanks for sending it in. I'm attaching your photo!

Missy
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