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About me

Dulce
From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body". I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!
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Check out these links!

  • Shalon's blog
  • Shalon's Website

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Cyndi's AVM journey

Check out my Pictures at the bottom of the page!

Huge Breakthrough!!!

Wednesday, September 29, 2010



Hi Everyone!

How are you? I'm doing great! That's the steroids talking, ha, ha, ha! Sunday will be a sad day and my first whole day w/out a steroid! Yikes! That is when the pain will set in - usually! Last embolization I had to go through FOUR rounds of steroids before I finally felt well enough w/out having to take them!

Ok, so the BIG news of the day is .... FINALLY, FINALLY there is proof to the doubters that all the horridness of what I've been through will come to an end and it will really, really all be over - for REAL! What am I talking about? Some of you already know! Last week, my buddy Shalon, another avm-er, was going in for her first debulkment! I already went through my first one, but Shalons was such a dramatic change! She really questioned the doctors about every single step they would be taking during the debulkment and she had the nurses taking photos during the procedure! Wow! You can see these photos in a slide show on Shalon's website! You can get to her site from mine! Please do take the time to look for them - it will help everyone understand what we go through and that all that we HAVE gone through is not in vain! I won't mention any names, but I had someone actually ask me whether I felt I was being used as a guinea pig by these doctors, because apparently this person wasn't seeing any improvement on me fast enough to satisfy them. I'm sure people don't want to see anyone suffer and maybe this person had my best interest - but this is a slow process and incredibly difficult to understand!

I just wanted the opportunity to show eveyrone that keeps in touch with me a photo of "original Shalon" and the fantastic way she looks after her first debulkment! This is because she is still swollen from that procedure but you can tell what a wonderful difference it makes! Yay Shalon! You have been incredibly encouraging to me and so many other avm-ers! You do so much for so many and we appreciate it!

I can't wait for it to be my turn! About two embolizations ago, Dr. Hepworth said that maybe in 6-8 more, that he wanted to do another debulking on me! Ugh, those are tough - well, it all is! This last trip was just rough all around!

So much to think about still - everything we went through. I'm shooting for heading back to CO the week after Thanksgiving. We'll see. I have to start working w/my Therabite again - haven't made time for that lately.

Just wanted to take some time to show everyone what an incredible breakthrough has been made in my avm world to my friend Shalon! It's been and still is a very rough road, but to finally SEE first hand that this WORKS!!!! All your prayer gives me the strength to get through - it really does! Many people @ the courthouse where I work will tell me how incredible I am to keep working, or whatever - but I always give credit to Our Lord of course ... our faith and all the prayer warriors I have!

Oh! Yes, back to Shalon - go to her website or blog (see the link on my site to hers) and read over a bit and you will see one area that says something like "Grody pictures", so click on that! It starts w/a photo of cupcakes, but keep watching! Viewer discretion is advised for the weak stomached! Thank you Shalon for putting those photos out there! We all need to see what happens when we are under!

Thanks again everyone! Love you all! Maybe our journey will reach it's end soon!
Hugs!
Cyndi

Posted by Dulce at 11:41 PM  

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