Do I have an AVM? left hand pic attached - Page 2 - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > AVM Help > AVM Help and Resources

Reply
 
Thread Tools Display Modes
  #11  
Old 02-08-2011, 01:12 AM
ericinfo ericinfo is offline
Junior Member
 
Join Date: Mar 2010
Posts: 12
Default

Ok, so due to some stupid move on my part, I had to wait the better part of a year to do anything with this thing. I now have Blue Cross PPO that allows me to self refer, so I'll be contacting the good doctor that was nice enough to email me back and forth and see what we can do about this.

Folks, NEVER get an HMO ever! You will never get anything done with a VM or an AVM on an HMO unless it threatens your life. What a giant pain in the @*#^^#%$^%$.

PPO is the only way to go now.
Reply With Quote
  #12  
Old 03-03-2011, 06:17 PM
Joelina Joelina is offline
Junior Member
 
Join Date: Feb 2011
Posts: 1
Default Same, same but different

Hey Eric,

First of all sorry for my english, I'm not really good in medical vocabulary

If got a similar AVM concerning my thumb an forefinger and parts of the lower arm from birth on. (I'm going to take some pictures tomorrow and post them).

At the moment I've got problems with the AVM because I took the pill and got a thrombose in the fingers, so I have to inject heparin at the moment. Normally I've got no problems with the AVM, and I automatically take care of the arm without mentioning that (carrying heavy bags with the other arm, sleeping in a special position etc.).

I don't know if you're still an active member of this forum but maybe we can share some experiences?!

I'm living in Germany so if anybody has a similar AVM and lives near Frankfurt am Main please contact me it would be nice to change experiences because I know nobody with that kind of AVM.

Enjoy your day!

Julia
Reply With Quote
  #13  
Old 04-07-2011, 11:18 PM
rightarmavm rightarmavm is offline
Junior Member
 
Join Date: Apr 2011
Posts: 3
Default

This is the first time I've ever seen a hand that looks like mine, and it's actually a relief to know that I'm not alone. I've done surgery/sclerotherapy/compression sleeve and held it over my head so that it drains. Exactly 3-weeks ago I had surgery to remove a clot or thrombosed vein in two areas of my hand. Until last night I had been in quite a bit of pain and have only had about 5-10% mobility in my hand post surgery. I was questioning whether the surgery was a HUGE mistake! And then I felt that my compression sleeve was lose on my hand/arm, which I knew must have meant the swelling had subsided. It was such an amazing moment that I cried. I have tons of pictures from before and after surgery that I will post on here in hopes that it will help others make the best decision regarding treatment. If there's anything I can do to help any of you, please don't hesitate contacting me.

Thank you for posting this picture of your hand. God bless you all.
Reply With Quote
  #14  
Old 07-22-2011, 09:01 PM
ericinfo ericinfo is offline
Junior Member
 
Join Date: Mar 2010
Posts: 12
Default

So, I have finally completed my journey. Dr. Levitin did an amazing job at excising the vascular malformation/venous malformation that I had on my left hand. I am about 2 months complete from Case 1, which removed half of the VM, and about 22 days complete from Case 2, which removed the second half of the VM.

I have developed a blog to assist, educate, and commend Dr. Levitin for the work that he accomplished on my hand.

You can find it at http://drgregorylevitin.tumblr.com

Please feel free to contact me with questions or for a referral for Dr. Levitin. He's a great guy and a fantastic doctor in this field.

Thanks,

Eric
Reply With Quote
  #15  
Old 07-22-2011, 10:57 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,729
Default

yeah, he does rock, doesn't he? Glad you had such a wonderful outcome!

Missy
Reply With Quote
  #16  
Old 05-17-2012, 01:23 AM
Kirra Kirra is offline
Junior Member
 
Join Date: May 2012
Posts: 1
Default My AVM, also of the left hand

Hi Eric,
I have just read your thread and followed your case study.
I did also send an email to Dr Levitin last night.
I cannot believe the similarity of our case and would be extremely interested in speaking with you further if possible.
I am located in Australia and am a 41 year old female.
I also have a AVM of the left hand which I have dealt with for some 26yrs now.
I can undertake most things and also have a high tolerance to discomfort.
I would really love to chat to you via my direct email if possible (kirrashines@yahoo.com.au).
Thanks kindly
Kirra
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump