Other Vascular Issue with VM???

My daughter has vm on almost the entire right side of her face. That is an issue in itself and we are working hard to get her to Dr. Waner or another recommended physician. However, my question is really about whether or not anyone else has had other vascular problems with their vms? For instance, she has tiny little spider veins and getting blood or an iv going it next to impossible - they always end up going into her foot. Also, when she cries or strains, she gets a petechial "rash". She has also been known to develop the petechia. So far, all tests administered by doctors here have come back unremarkable. One doctor feels that it could be a collagen deficiency or disorder. Does anyone have any info. or experience with any of this. I am desperate!!

[hankbartenbach]

Hi what part of the USA do you live in?

Dr. Yakes works allot with VM's. He is located in Denver CO. I am seeing him in a week and a half for my problems. If you are on the east coast there is a doctor in Boston I think that has worked with VM allot. Other then that Dr. Waner is good. I am seeing him as well for plastic surgery on my PWS.

I hope this helps some,

Hank

We are in central IL, not really close to any of these doctors that people on the boards rave about. Right now, my plan is to stop messing around and make an appt. with Dr. Waner - just need to check into insurance issues. Mostly, I was just hoping to get some feedback on the other problems, to research in the meantime and to be preparing for what it may or may not be.
Thanks for you response.

[hankbartenbach]

Just a far warning, Dr. Waner does not particapate with any insurance companies. Sonya is insurance lady is really behind. I have a friend that saw Waner last May and still has not received the bill yet.

Sonya is the person you would have to talk to to find out if it would be approved from your insurance company.

Mine is covering my surgery. I have Blue Cross Blue Shields with a PPO. The hospital bill was very expensive.
I was quoted at between 10 to 20 thousand for each surgery, but it will a different treatment in your daughters case. I am having plastic surgery on my PWS.

Email me hankinco@adelphia.net if you want waner's contact info unless you already have it.

Talk to you soon,

Hank

[nickbar]

You might want to have a consultation with

Dr. Annette Wagner
Children's Memorial Hospital
Chicago, Il.
773-327-3446
Westchester, Ill. (ofc)
708-836-4800
specializing in birthmarks


GOOD LUCK.

Corinne

Corrine,
Do you know anything about Dr. Wagner - have, or know of, any experiences with her? I hate to sound so peticular but, I feel we've already wasted so much time, I don't want to mess around with someone who may or may not know. I mean, it would be GREAT to find someone closer to us but, at the same time...
Thanks so much for your response!
Amy

[nickbar]

I wish I had a lot of specific things to tell you about her.* I've only heard a few positive mentions of her name as far as her experience and involvement in the vb specialty.

I really can't tell you if seeing her would be a waste of time.* * I will post for parent feedback and let you know what I hear.* However, they might not be seeing her for vms.*

I would still encourage you to contact Dr. Waner as well.*
-
Corinne

[nickbar]

Here is a reply from a member of our vb support group on msn.

She is a WONDERFUL doctor! She is the one that saw Emilia when our journey first began (but couldn't stay with because of insurance reasons). She is also the one that our treating derm consulted with on a regular basis. I know that she treats all types of birthmarks and is a very skilled surgeon. She regularly uses laser as well. She is very busy, but always took the time to answer all of my questions. While our regular derm was on maternity leave, we went back to see Dr. Wagner again. She followed us through the skin graft with the plastic surgeon. The surgery was purposely scheduled for her day off so that she would be able to be there, I could go on and on...

Let me know if you have any further questions.
Kim

_Corinne

Thanks very much for the info. on Dr. Wagner - it sounds like she might be worth a try.

I notice most of these doctors are plastic surgeons and dermatologist but, do they deal with the vascular problems on the whole or purely the cosmetics of the situation?

Thanks again to everyone on this board, it's a Godsend to have somewhere to go.

Amy

[nickbar]

It depends on which doctor... But, most do manage the entire case (sometimes referring to other specialists...ie. eye/internal lesions etc.)

Corinne