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-   -   new here (http://birthmark.org/board/showthread.php?t=1227)

KristieinStMarysGA 02-18-2005 10:45 PM

new here
 
HI all I am new here, just dx with an AV malformation/AV Fistula in my left elbow/forearm. Was told I was born with it and it has gotten worse I am 26 years old and live in a small town in southeast GA, I moved down here a year and a half ago from Long Island NY.
There are no signs of it visible on the skin, except for a large "mass" on the elbow and bruising off and on for the last 5 years or so, I no have swelling from the elbow to the fingers, for the last month or so i have not been able to use my left arm/hand due to swelling and pain. Over the years I have been to many DR's throughout the NY tri-state area, and being told it was fine just a bruise and it would go away ???
I have been out of work for over a month now, have lost my insurance, cannot get the radiologist to call back..I am so frustrated now, I am glad I found this site...
Is this that rare?? Because this DR I am waiting on is the only one in the area, other than my vascualr surgeon recommending someone in colorado ???
For those who have rec'd treatment, has it worked?
feel free to e-mail me at isleskristie@tds.net

imported_missy 02-18-2005 11:17 PM

Re: new here
 
Kristie,

St Marys is a tough place to get a job!! I lived there for five years!

Any chance you could see someone in Jax?

Missy

KristieinStMarysGA 02-19-2005 01:05 PM

Re: new here
 
trying to find anyone in the camden/glynn area. mayo clinic in jax is an option but they want at least $2500.00 to even look at me!
Yes St.Marys is a hard place to find a job, lucky for me I have a decent job, I am on medical leave, but lost my insurance b/c I have been there less then 6 months...but my job is safe.
Thanks for the reply....

KristieinStMarysGA 02-21-2005 09:30 PM

Re: new here
 
I finally heard from the radiologist, and I am scheduled for an arteriogram (sp) on Thursday, has anyone had this, what should I expect?
Also he mentioned something about putting some kind of coil in my arm? I am going to talk to him more on thursday, but what does he mean by coil?

Thanks!
Kristie

imported_missy 02-22-2005 12:46 PM

Re: new here
 
An arteriogram is where they inject some sort of dye (or some type of contrastable material) into arteries, so they can see what the vessels look like through xray.

The thing they use to thread it into the artery is called a coil. They'll show it to you before they put it in there! LOL

I'm told it doesn't hurt, except for the sting of the anesthetic and, per my father-in-law, one sharp STING after that. That would be the coil going into the artery. Some minor bruising after that.

Be sure to ask the doctor ALL questions before you start.

Let us know how it goes!

Missy

KristieinStMarysGA 02-24-2005 10:54 AM

Re: new here
 
Hey all!

Well I go in today for ny arteriogram today, hopefully I will get some answers and ways to treat it!
Thanks for the replies!
Kristie

juliemn 02-24-2005 11:17 AM

Re: new here
 
Good luck today. Glad you found another source of support!

The coils are just like they sound. They look like tiny little springs and are made of platinum.

Once the coils are in place...the blood that used to flow through that artery is blocked, and will make a small clot. This stops the abnormal blood flow through that area. The fistula (or hole) that it blocks does not have any necessary blood flow going through it.

My son Ben is the proud owner of 12 of these platinum coils! LOL

If I can figure out how to post pics....I'll post one of his pre and post vessels, along with the picture of the coils he has. I'll bet he's the only kid around who has pictures of the vessels in his brain in his baby book.

Julie


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