Hello, here's my story. - 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 > Individuals Living with Birthmarks > Adults Living with Birthmarks

Reply
 
Thread Tools Display Modes
  #1  
Old 10-10-2006, 12:53 AM
jeri-lee
 
Posts: n/a
Default Hello, here's my story.

Hi there, My name is Jeri-Lee. I live in Calgary,AB and am 28 years old. When i was 15 a lump began to grow on my lower back, sacral area to the left of my spine. It grew, and became inflamed periodically and was slowing me from riding my horse, and lifting heavier objects and many other physical activites. I started seeing a doctor and they immediately told me it was just a Lipoma, which is a benign fatty cyst/tumor. They told me many times that it's not painful, but after several visits to the doctor explaining the pain i was in they sent me to a surgeon to have it removed. Within a year it had come back and i have been seeing doctors for years and no one ever sent me in for an MRI or Ultra sound until a year and a half ago.

No one has seemed to be able to give me a straight answer, until a recent surgeon told me that he does not believe this to be a lipoma, but a Venous Malformation. Which i had never heard of.

I"m going for my third MRI on Jan 3/07, and am hoping they can give me any more information. I"ve been told that if it is infact a venous malformation, surgery will never help it, it will always be there. I don't accecpt this answer and am going to see if i can see another surgeon and get a second opinion as well as visit a naturopathic doctor.

I have extreme emotional attachment to the pain involved with this problem in my back. Being so young, and in so much pain at times is really unfair, and i really hope that this is not going to be with me for the rest of my life.

If anyone has any information on internal venous malformations related to lower back and sacral areas or links to share it would be much appreciated.
Reply With Quote
  #2  
Old 10-11-2006, 08:51 PM
hankbartenbach hankbartenbach is offline
Senior Member
 
Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default

Hi Jeri-lee,

First of all welcome to the group.

Being that I have been down the same road with my facial PWS I know exactly what frustration you have with doctors. It took me a very long time to even find a plastic surgeon to even consider to try surgery.
If you are considering getting another opinion I would recommend my plastic surgeon who is Dr. Milton Waner. You can find his contact info in the resource section above. He resides in New York City.

Also, to maybe get a quicker response from Dr. Waner or Dr. Levitin (Dr. Waner's partner) on what they think options you might have. You can contact Dr. Levintin directly using the link on the front of this website. He is the "ask the sergeon" If you email him pictures and description of the VM he would be able to give you his opinion, or recommend you to go in for an appointment.

I hope this will point you in the right direction. If you have any other questions please ask.

Talk to you soon.

Hank
Reply With Quote
  #3  
Old 01-18-2007, 02:36 AM
maureenormickey
 
Posts: n/a
Default

Hello,

I hope your MRI went well. I am 28 years old and I have a VM in my back. It is not visible from the outside. It is in my upper Thoracic spine. I can definetly sympathise with your pain. I have extreme pain from mine. I live with it daily. Never stop finding other opinions if you do not get the results you want. I have gotten a lot of "just live with it" and "you are young, you'll be fine". Well the truth is I AM NOT fine! I am 28 and feel pretty disabled by this. And I DO NOT accect that I have to "live with it". Even the Dr.'s that are famous for dealing with this, find it hard to believe the kind of pain that it is causing me. Of course they admitt that the location of mine is extremely rare, even concidering how rare these things are to begin with. They have not actually seen a single one in the location that mine is in. So my advise is to not give up and keep searching for the right help and the right diagnosis. Hank is right, Write to Dr.Levitin that is where I started. I know see Dr. Berenstein, Dr. Burrows, and Dr. Perin all in NY. I live very far away in New Mexico but it is worth the trip, if not just to hear the words, that they know what it is and can help you. Good luck.

Maureen
Reply With Quote
  #4  
Old 01-19-2007, 12:26 AM
jenn1900
 
Posts: n/a
Default

Jeri-Lee,
what part of the country are you in?
Reply With Quote
  #5  
Old 04-18-2007, 07:48 PM
jeri-lee
 
Posts: n/a
Default

Hello everyone,
thank you all for your support and responses. I have not been on here for a while.

To answer some questions, I live in Canada. Calgary, Alberta actually. My present surgeon/Dr. is Dr. McPhalen. and is is one of the two specialists in Calgary.

My MRI in January was my 3rd, and i was injected with dye. I was able to see the results, and the VM is very large in my lower back. Larger than my fist and quite deep. I have a blood clot related to it as well, and it's causing me lots of pain.

We discussed me having surgery. I realize there is no 100% guarantee, but i feel i need to give it a shot. I'm having an extremely difficult time that i'm going to have to deal with this chronic pain for the rest of my life. I am in pain.

I now have another appointment to see him in a couple of weeks, because not the pain is spreading and i can see darker veins on my left hip which is very sensitive. I too have a very rare case. He's never seen or heard of one in my location before either.

I will keep up more with the posts on here now, especially since i am discussing surgery, and i am so happy to have finally met some others who can relate to me.

I feel your pain!
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

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 15 03-21-2013 08:03 PM
My story... sweet pea Living with a birthmark - my story 5 01-04-2010 06:28 AM
Our Baby's Story foxsmom Living with a birthmark - my story 1 06-27-2009 10:02 PM
Jacqui's Story - Life With a Lymphatic Malformation jacquismom Living with a birthmark - my story 4 06-19-2008 08:03 PM
My Story bfull Living with a birthmark - my story 4 05-01-2005 06:18 PM