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  #1  
Old 07-27-2009, 03:26 PM
xrox xrox is offline
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Default Looking for competent doc in Toronto

I'm one of those parent internet doctors that real doctors hate I've ended up here after self diagnosing my child thanks to clueless doctors.

When our daughter was born, one of her toenails was slightly bluish and the toe was a tiny bit to large so we questioned our family doc, and pediatrician, and they both said it is just a vein too close to the surface.

Fast forward 3 years later with no symptoms and then just last week the toe and about a 1inch square portion of her foot surrounding the toe has become swollen and bluish but is completely pain free.

After reading the internet I first thought it was congenital lymphedema but I feel VM is more likely the diagnosis due to the bluish hue.

Off to the doctor we go and again they are clueless and tell us not to worry (put some ice on it )? So I would like to ask a few of you experienced patients and parents some questions if you don't mind.

1 - Do you agree it sounds like a VM? If not, any suggestions?

2 - Any recommendations on a VM specialist in Toronto that can give a proper confirmed diagnosis and treatment plan?

3 - What can I do as a parent to limit the swelling? Do any of you use compression garments? Does drainage massage help swelling similar to lymphedema?

4 - Medical websites seem to suggest that treatment is very effective (sclerotherapy with pure alcohol) but from reading this forum I get the opposite impression. Are there any true success stories out there?

Thanks everyone,
Xrox
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  #2  
Old 08-06-2009, 08:23 PM
xrox xrox is offline
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Also, I would love to contact member Donovan to discuss her experiences with finding help in Canada, or any other members seeking treatment in Toronto or Montreal.

Cheers,
Xrox
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  #3  
Old 08-07-2009, 02:26 AM
missy missy is offline
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Let me see if I can get in touch with some of our canadian contacts and if they have any recommendations, doctor-wise.

Might be a couple of days before I hear back, so try to be patient with me.

Missy
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  #4  
Old 08-07-2009, 04:15 AM
nickbar nickbar is offline
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I would also suggest contacting our ask the expert members to review the symptoms and history and most likely a proper diagnosis. It is best that this is reviewed in person for proper care and diagnosis, but having our experts review will give you a better idea of what you might be dealing with and if VM could be ruled in or out.
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  #5  
Old 08-13-2009, 02:07 PM
xrox xrox is offline
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Thanks everyone. I look forward to any info you might find. I contacted the expert member for VMs and he agrees that (venous)VM is the likely diagnosis.

Also, we seem to have stabalized it's unusually fast growth and swelling by keeping her body cool and elevating her foot when we can. Warm water compresses seem to help with the clotting. Not sure a compression sock will do anything as the VM is near the ball of her foot and 4th digit?

My wife and I are now paranoid that she has more of these elsewhere on her body. She has a lot of visible veins on her face (around one eye) and under her chin. Are visible blue veins a possible indication of more VM lesions?

Also, we managed to convince our family doctor to order an MRI. Now we just have to wait 6 months ;D

Cheers
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  #6  
Old 08-13-2009, 10:58 PM
missy missy is offline
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Six months?!? Sheesh.

I did hear back from my canadian contact, but he had no real resources to direct to you. His attitude was that, unless a physician was actively engaged in research, they weren't interested in having a patient with a VM.



Missy
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  #7  
Old 08-14-2009, 02:41 AM
xrox xrox is offline
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Quote:
Originally Posted by missy View Post
Six months?!? Sheesh.

I did hear back from my canadian contact, but he had no real resources to direct to you. His attitude was that, unless a physician was actively engaged in research, they weren't interested in having a patient with a VM.



Missy
Thanks for trying I managed to get in contact with a pediatric VM specialist in Montreal named Josee Dubois. She is willing to see our daughter.

Her method of treatment is foam STS injections. I've done some research and this method is quite effective (not as effective as pure ethanol) but is also much much safer than alcohol.

I'll post some info that others may like to read.
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  #8  
Old 08-14-2009, 01:12 PM
missy missy is offline
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Well, fantastic!! Please let us know how things go for your daughter. When can you see Dr. Dubois?

Missy
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  #9  
Old 08-14-2009, 02:23 PM
xrox xrox is offline
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No date yet. I've just been in contact through email and we have to figure out insurance before we make an appointment.

If anyone is interested here are some good info on STS foam

http://www.veithsymposium.org/pdf/vei/1744.pdf

Also, a general link about different types of sclerotherapy

http://phleb.rsmjournals.com/cgi/reprint/22/6/264.pdf

Here are a couple about ehanol

http://www.miit.com/PDF/MIIT%202003/...%20Ethanol.pdf
http://www.vascularmalformationcente...formations.pdf

Cheers
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  #10  
Old 08-14-2009, 11:27 PM
missy missy is offline
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Thank you for the links!!

Let us know how things progress. I'm so glad you have found someone to work with you and your daughter.

Missy
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