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-   -   Venous malformation of knee (http://birthmark.org/board/showthread.php?t=1149)

squeege 01-14-2005 02:07 AM

Venous malformation of knee
 
Hi there - this is my first time on this site and I hope you can provide me with some information.

My 3 year old daughter has a venous malformation in her right knee. She has had 3 sclerotherapies, but only the first one was successful. It decreased the lesion quite a bit, but she still has pain almost daily, walks with a limp and cannot extend or flex her knee fully. We seem to have exhausted our possibilities with our specialist (we live in Canada and she has been treated at Sick Children's Hospital in Toronto).

Does anyone have any suggestions for further therapy? We hate to see her in pain but aren't sure if there are any other options for her.

Thanks so much,
Susan

Jin9084 01-15-2005 05:19 PM

Re: Venous malformation of knee
 
I would sugest that you contact Dr. Waner in NYC. I don't know if he could do this himself or if he would need to refer you to someone else. Also, you may try the Ask A Doctor here on this site. Here is the link http://www.birthmark.org/ask_the_doctor.php TO find it on the site go to the HOME Page and click on contact the VBF. THen click on Ask A Doctor. I am sorry that I could be more help.

squeege 01-15-2005 08:22 PM

Re: Venous malformation of knee
 
Thanks - I did try the Ask the Doctor, but have never had a response back. Does someone actually answer those emails? Maybe I should try again.

How do I contact Dr. Waner's office??

Thanks again,
Susan

Jin9084 01-16-2005 01:09 AM

Re: Venous malformation of knee
 
Hi. Yes someone does answer those questions from Ask A Doctor. I don't have Dr. Waner's email address but here is the number to his office. 212-987-0979
Jinny

Jin9084 01-16-2005 07:54 PM

Re: Venous malformation of knee
 
There is another doctor that you might want to contact. His name is Dr. Fishman and he is located in Boston, Mass. Here is his info. Dr. Stephen Fishman
Surgery Department
300 Longwood Avenue
Boston, MA 02115
617-355-8166
Jinny

imported_missy 01-17-2005 12:34 PM

Re: Venous malformation of knee
 
Dr. Hochman, who answers our ask the doc emails, gets a LOT of mail from VBF. I know it takes a bit for him to answer, but he does answer. At some points, he gets 10 emails a day, just from VBF ask the docs, so he gets behind.

Missy

squeege 01-19-2005 12:42 AM

Re: Venous malformation of knee
 
Thanks for all the advice. I did post another Ask the Doc question the other day and will wait patiently for an answer.

My daughter fell on her knee today at gymnastics and is having a lot of pain. It is really hard to see her live with that. I am not sure if I should contact these docs in the States, being from Canada.


Squeege

squeege 01-19-2005 01:25 AM

Re: Venous malformation of knee
 
Hi again - since I am new to this forum and website, I am slowly learning to navigate around. I just realized when I logged on tonite that I had a personal message waiting for me (an email) from Jan. 14. I tried to email that person back, but there was no email address for her and she didn't leave any other contact information, but eagerly wants to talk to me as we seem to have a similar situation.

Any ideas how to contact her? She logged in as "Donovan" and signed her email Liz. So Liz if you read this, please email me back or post on this thread - I am very interested in talking to you.

Susan

Peternh 08-30-2011 03:09 AM

Hi Squeege,
I realise your posts were a long time ago, but I thought you could give me an update on how your daughter has gone.
I have a son who is 2 years old and has a venous deformation of the knee, that causes similar symptoms as you explain.
It is very distressing, but there doesn't seem to be a lot we can do. They have not attempted any treatment yet.
I live in Melbourne Australia.
Pete

missy 08-30-2011 11:10 AM

hi and welcome, Pete!

I'm geographically illiterate, so I'm not sure how much trouble it would be to go from Melbourne to NZ. But I will list a couple of doctors you should get in touch with. Also, try asking an expert here: http://birthmark.org/experts.php and see what they suggest. Dr. Levitin would be good to contact and so would Dr. Rosen.

Dr Philip Bekhor
Director, Laser Unit
Royal Children's Hospital
Melbourne, Australia
and
Laser Dermatology
503 Elgar Rd
Box Hill, Melbourne
Victoria
Phone 61 3 9890 1844
www.laserdermatology.com.au

New Zealand
Dr Swee T Tan MBBS FRACS PhD
Director,
Centre for the Study & Treatment of Vascular Birthmarks,
Wellington Regional Plastic, Maxillofacial & Burns Unit,Hutt Hospital
High St, Private Bag 31-907, Lower Hutt,
Wellington, New Zealand.
+64 4 5709067
Fax +64 4 5709510
sweetan@plastsurg.co.nz






Missy


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