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-   -   Hello, here's my story. (http://birthmark.org/board/showthread.php?t=2101)

jeri-lee 10-10-2006 12:53 AM

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.

hankbartenbach 10-11-2006 08:51 PM

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

maureenormickey 01-18-2007 02:36 AM

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

jenn1900 01-19-2007 12:26 AM

Jeri-Lee,
what part of the country are you in?

jeri-lee 04-18-2007 07:48 PM

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!


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