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SUCCESS STORIES

A forum to share your sucess stories on any number of AVM issues, such as surgery, medications or alternative therapies, etc., to give the rest of us ideas and hope for the future.

Location: entertainment-oriented groups
Members: 88
Latest Activity: Sep 10

Discussion Forum

So very grateful to be AVM-FREE - PRAISE GOD!!!

Started by Michele_A. Last reply by Paulette Jul 28, 2013. 6 Replies

Hello my dear friends and AVM family!!! Friday, May 4th, 2012 was an AMAZING day for me and will start with Thanking the Lord for HIS divine healing!!! “For through me your days will be many, and…Continue

I am content (for now!)

Started by flower. Last reply by dancermom Jun 4, 2013. 5 Replies

Saw my neuro. He told me the loss of vision I sustained through my brain op is significant and I won't be able to drive. He told me that having children after what I have been through would be very…Continue

I believe in miracles*

Started by Emily. Last reply by Julia Rose Apr 28, 2012. 8 Replies

Hi, I'm Emily. I've never really explained my AVM story to anyone cause no one really understands what it is besides my family. Thats why I was so happy when I found…Continue

4/11/12 Pretty much stress free <3

Started by kristinryann<3. Last reply by Ninibeth Apr 11, 2012. 2 Replies

Today my Neuro surgon had me do another MRI and because it showed no issues, he said I will see you in two years. <3 I am medically okay with no more avms! Now I just get wingged of my seizure…Continue

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Comment by Current#17 on May 18, 2014 at 10:29pm
I just had my angiogram in preparation for my prosthetic bone flap placement. No evidence of any AVM! Yesssssss!
Comment by Lori on April 28, 2014 at 8:24am

Hello, I am new here. My name is Lori. I am 39 next month. I am a mother to three boys ages 9, 7, and 4. I never so much as heard as a malformation my entire life until this past January. I had a surprise pregnancy. This time I was carrying a girl and I felt "different" from the start. A friend noticed a bump on my face (lower left mandible between chin and ear). I began with a trip to an ENT. This followed with trips to a maxiofacial surgeon, radiologists (for ultrasounds), more ENT's, a vascular surgeon and then another vascular surgeon who specializes in vascular birthmarks of the head and neck. I live in North New Jersey and always thought the NYC area was loaded with some of the best doctors in the world. Well, as it turns out, most of those "best doctors" take NO in network health insurance. How lucky that I currently have no out of network. I went last week to Dr. Gregory Levitin. He feels I have a lymphatic malformation, possibly part venous. As it has been explained to me, my risks are nerve damage and the threat of this growing back, more than double. Yet, I've also been told if I do nothing at all, it can double anyway. As it stands right now, it's not SO obvious and I just cannot decide what to do. I am a member of many forums on Facebook (some of you may know me from there) and I fall apart into pieces when I see all of the mixed opinions about sclerotherapy vs. excision. I just want to get to a place where I truly believe what I'm choosing is the best option for me. I'm scaling the globe for someone who has a malformation similar to mine and better yet, who has overcome it. Even better if this person is a former patient of Dr. Levitin. Thanks for taking the time to read this.

Lori

Comment by Lori on April 28, 2014 at 8:23am

Hello, I am new here. My name is Lori. I am 39 next month. I am a mother to three boys ages 9, 7, and 4. I never so much as heard as a malformation my entire life until this past January. I had a surprise pregnancy. This time I was carrying a girl and I felt "different" from the start. A friend noticed a bump on my face (lower left mandible between chin and ear). I began with a trip to an ENT. This followed with trips to a maxiofacial surgeon, radiologists (for ultrasounds), more ENT's, a vascular surgeon and then another vascular surgeon who specializes in vascular birthmarks of the head and neck. I live in North New Jersey and always thought the NYC area was loaded with some of the best doctors in the world. Well, as it turns out, most of those "best doctors" take NO in network health insurance. How lucky that I currently have no out of network. I went last week to Dr. Gregory Levitin. He feels I have a lymphatic malformation, possibly part venous. As it has been explained to me, my risks are nerve damage and the threat of this growing back, more than double. Yet, I've also been told if I do nothing at all, it can double anyway. As it stands right now, it's not SO obvious and I just cannot decide what to do. I am a member of many forums on Facebook (some of you may know me from there) and I fall apart into pieces when I see all of the mixed opinions about sclerotherapy vs. excision. I just want to get to a place where I truly believe what I'm choosing is the best option for me. I'm scaling the globe for someone who has a malformation similar to mine and better yet, who has overcome it. Even better if this person is a former patient of Dr. Levitin. Thanks for taking the time to read this.

Lori

Comment by Birdie on February 5, 2014 at 11:23pm
Exactly 3 yrs after this miraculous AVM nightmare began, I can now proudly say that I am AVM free!!! Please check my page for the full story :):):):)
Comment by Gwen on August 7, 2013 at 8:34pm

We are all so very blessed, and I feel so fortunate. Take a few minutes to help another member... you never know how much your support can change another's life.

Comment by Tony L Sydney on June 2, 2013 at 9:21pm

I am feeling so free today, because I have finally walked away from our local subgroup. No one needs help - they can all look after themselves. I gathered this from the fact that 90% never ever make a comment, or support one another. So they are all doing well. Awesome and inspiring!


Moderator
Comment by Louisa on February 16, 2012 at 10:21am

Doug...Isn't it a day to celebrate being AVM Free? Congrats!

Comment by Doug Bober on February 16, 2012 at 10:00am

Hi, folks. Today is my 1st Craniversary. I feel very blessed and well!


Moderator
Comment by Ninibeth on February 6, 2012 at 8:30am
Ervim asking for water it is a big step... Good news :-)... thanks for letting us know..
Comment by evrim (wife) on February 6, 2012 at 3:38am

after 40 days from crainiotomy of my husband, he is awake enough to drink a few sips of water. The best thing is he asked for it. :) our first success story. I wish to share more .Have a nice and lovely day.

 
 
 

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Results of 3rd procedure

Posted by Svetlana on September 10, 2014 at 2:49am 3 Comments

It's now 2 weeks after the 3rd trip to Arkansas that was the most successful. Dr Richter did lasers and bleomycin injections (he chose bleomycin again because it showed better result than doxycycline), it worked very well, with no complications,…

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