First time/My story - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo
1994 - 2015
Celebrating 21 years with
80,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Individuals Living with Birthmarks > Living with a birthmark - my story

Thread Tools Display Modes
Old 11-20-2005, 06:59 PM
Posts: n/a
Default First time/My story

Hi! My name is Jennifer. I am 34 yrs old and have been living with hemangioma all my life. When I was three years old I fell from a bicycle. Days later, the right side of my head began to swell. Fluid was drained from that side of my head, but few days later it swelled again and it was twice the size than before. It was decided then to surgicaly open and find the cause. It turned out that it was hemaniogoma. It was removed and thought that would be it. Not so. Two years later my right lower eyelid began to swell and became very firm. Test revealed that more hemangioma was still there. I again had another surgery to remove the tumor.
For a good 7 years I had pretty much a normal childhood although more of the tumor appeared in my upper palate and inside the right cheek. My doctor at that time told my parents to just leave it alone since it was not causing any problems, i.e air obstruction. Although everytime I would have a sore throat or a cold it became very painfull. The right lower eyelid had a discoloring as if I had a black eye all the time. Yes! I got the looks/the stares. In 1987 (seems eons ago!), I had a CAT scan and found that I had more hemangioma behind the right orbit and wraps around the optic nerve. This was also causing the eye to protrude out. In addition to that, there were more on the right lower eyelid . I was very disappointed by this news. At that time my parents and I did not have a lot of options on what should be done. Removing the one behind the right eye was risky and it could possibly leave me blind in that eye. So for the time being all we could do was to hope and pray that nothing would go from bad to worst and medications (prednisone) to control andy swelling.
For three years it was just monitoring the growth of the hemangioma. Medical advances have greatly improved and laser surgery came in the picture. For 3 years I would undergo laser treatments for the one inside my mouth and lower eyelid. Unfortunately, still cannot do anything for the one behind the right eye because of the risks.
Things seems to have quiet down for some time until 2003 when my lower eye lid began to swell once again and more of the hemangioma appeared inside my mouth. I had a problem of also finding another doctor who handled these type of cases, which was not easy task. I went from one ENT to another and basically said the same thing---not much they can do or did not want to take the case. Up until this year....
In January of 2005 I went to see a doctor in New York City. Not only he was able to help me but also referred to someone who is an expert on hemangiomas. That was when I met Dr. Milton Waner. I can not forget what he said "I can help you, we are going to take care of this". He really is a God send. He explained to my why the the hemangioma kept coming back on the lower eyelid and it was because it was a Lymphatic malformation. I had a few surgeries this year and will have another one (hopefully) the last, this coming new year.
It is frustrating more than anything. I am optomistic that I am almost at the end.
Reply With Quote
Old 11-20-2005, 08:53 PM
hankbartenbach hankbartenbach is offline
Senior Member
Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Re: First time/My story

Hi Jennifer,


I am glad you found this website. It was a pleasure meeting you at Dr. Waner's office earlier this week. You will find several other people on this website that totally agree with you about Dr. Waner. He takes cases no one else will. God diffently has his hand on Dr. Waner shoulder.

Thank you so much for sharing your story I hope it will bring comfort to others out there that they are not alone. I have a hemangioma behind one eye and a AVM behind my other that are both making me go blind. I have already seen Dr. Waner's doctors about the condition, but they sure are not like Dr. Waner when it comes to treating these kinds of conditions.

Talk more later and thanks again for sharing.

Reply With Quote
Old 05-06-2006, 04:52 AM
Posts: n/a

Hello Jennifer,
I am new to the forum and just read your story and wondering if you had your last surgery and if so, how did it go? I have a venous vascular malformation on my upper left eyelid that is also wrapped around the orbit and optic nerves in my eye. With this, the doctors I have seen doesn't want to operate to the extent of removing it they will only do laser and schelrotherapy treatments which only removes a portion and then it grows back so this leaves me pretty much back to square one. I am searching for a doctor that is willing to try and remove at least most of it but have been unsuccessful thus far. I am in SC so traveling to NY would be quite a distance but I am willing to do so if I can find someone who could really make a difference in the VM and remove most if not all of it. I get head aches, dizziness and numbness of the fingertips and toes from mine and it really bothers me and causes me to have very blurry eyesight from the left eye. So is Dr. Warner able to remove all of your hemangioma? Please let me know what's going on with you as I am in your boat as well. Wishing you the best. Miran
Reply With Quote

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

Similar Threads
Thread Thread Starter Forum Replies Last Post
My story of living with a Giant Hairy Nevus on my back!! ocongr Living with a birthmark - my story 16 08-08-2014 09:43 AM
Our Baby's Story foxsmom Living with a birthmark - my story 1 06-27-2009 11:02 PM
Jacqui's Story - Life With a Lymphatic Malformation jacquismom Living with a birthmark - my story 4 06-19-2008 09:03 PM
My Story TPC Living with a birthmark - my story 1 02-28-2006 02:41 AM
My Story bfull Living with a birthmark - my story 4 05-01-2005 07:18 PM