We're AVM Survivors, Here For Your Support...
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Shalon
- Female
- El Dorado Hills, CA
- United States
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- Blog Posts (26)
- Discussions (167)
- Events (1)
- Groups (1)
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Shalon's Discussions
newborn with AVM
Replied Jan 18
Shalon's Events
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TAAF's 5th Annual Aneurysm & AVM Walk!
May 8, 2010 from 10am to 2:30pm – San Francisco- Fort Mason's Great Meadow
Just your typical girl next door...sorta!
Gifts Received (9)
French Pastries
From Allison S
Pug Puppy
Sent Anonymously
Red Patent Heels
From pauline horsley
AVM Awareness Bracelet
From Kim (Jaclyn's mom)
Pink & Zebra Hospital Gown
From Ben Munoz
Teddy Bear
From Scott Orn
Latest Activity
For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!
I know...crazy. We're at 1600+ now. You guys are amazing.
WOW, i was around the 200's now its over 1000 wow amazing and still growing. I love this site is a great support group ever and Ben is an angel up above...thanks for all the support here.. Lov ya AVM support group
For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!
TAAF's 5th Annual Aneurysm & AVM Walk! at San Francisco- Fort Mason's Great Meadow
May 8, 2010 from 10am to 2:30pm
Get your walking shoes ready!
TAAF is currently planning the 5th Annual AVM walk!
Last year was such a great success and we can boast that between Team AVM Survivors and Team Baby Nathan, that we were indeed the largest group walking. This year we…
May I ask who organized this walk, how many walked in it, and who I would need to get in touch w/ to organize a walk in my area?
For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!
Profile Information
- Are you an AVM survivor, a relative, a friend, or a medical professional? (Required)
- AVM Survivor
- What is the status of the AVM?
- Active
- How was the AVM treated?
- Embollization
- Describe the AVM (location, size) if you know it.
- Facial AVM, left jaw, cheek, lip.
- Please share your AVM experience. (Discovery, symptoms, treatment, recovery)
- For my entire story, visit my website and blog!
http://sites.google.com/site/shalonsavm/
http://www.shalonavm.blogspot.com/
We found out about the AVM when I was 6 years old. I've had many embo's over the years and my AVM has continued to increase in size and has had unwanted complications like scary bleeding episodes, skin necrosis, and a pretty good level of pain which randomly comes and goes. I'm currently undergoing ethyl alcohol treatments with Dr. Yakes in Colorado. We travel out to Denver about every 4 weeks and have already had 18 embo's with him as of August 2009. Results are great so far and I can absolutely see and feel the progress we are making. I'm optomistic that he will be able to cure this!
- Would you like to recommend a surgeon, therapist, or a hospital?
- Dr Wayne Yakes at Swedish Medical in Englewood CO
http://www.vascularmalformationcenter.com/
Phone: (303) 788-4280
Shalon's Photos
Shalon's Blog
Pretty in Pink!
Hello my lovely AVMers!
It's been a while since I've posted an update. I've still been making my monthly trips to Denver and feel like we are on the right course. Everything is going well so I've just been plugging along, staying busy and trying to live life to the fullest.
January was the easiest trip… Continue
It's been a while since I've posted an update. I've still been making my monthly trips to Denver and feel like we are on the right course. Everything is going well so I've just been plugging along, staying busy and trying to live life to the fullest.
January was the easiest trip… Continue
Posted on January 24, 2010 at 1:32pm — 5 Comments
Get Giving on the Gifts!!!
You all may have noticed some silly and fun "gifts" being given and received lately. So I thought I'd post a little note about them and why everyone should play! :)
First, it's fun!
Who doesn't like to get a gift???...even if it's only virtual! These silly little cartoons can brighten someones day, can be used to recognize something cool (like getting the "all clear!") or just for no reason at all. I mean really, who couldn't use a random cup of hot cocoa right now?!?!?
Second, it helps our co… Continue
First, it's fun!
Who doesn't like to get a gift???...even if it's only virtual! These silly little cartoons can brighten someones day, can be used to recognize something cool (like getting the "all clear!") or just for no reason at all. I mean really, who couldn't use a random cup of hot cocoa right now?!?!?
Second, it helps our co… Continue
Posted on January 8, 2010 at 2:44pm — 2 Comments
I'm Famous!
Ok, well not really... but still I did get mentioned in a newspaper article. That counts right? :)
I spoke with a reporter, Nara Schoenberg, from the Chicago Tribune a few months back about my "glamour gowns." She was doing research about the growing trend of homemade hospital attire and happened across a post I made on some ladies blog a while ago. Totally random, but maybe I'm just destined for stardom!
I totally didn't even know it had run yet, and apparently the print version actually had… Continue
I spoke with a reporter, Nara Schoenberg, from the Chicago Tribune a few months back about my "glamour gowns." She was doing research about the growing trend of homemade hospital attire and happened across a post I made on some ladies blog a while ago. Totally random, but maybe I'm just destined for stardom!
I totally didn't even know it had run yet, and apparently the print version actually had… Continue
Posted on December 23, 2009 at 10:49am — 7 Comments
The kindness of strangers...
People always ask how I stay so positive "looking" the way that I do. And you guys all know I don't care. I've looked different my whole life, have had great friends and family and a wonderful husband, and I'm confident despite this AVM. Plus I know I'm super cool! :)
But here is an example of exactly why I am positive, and why I continue to be confident in public and to smile and see the positive aspects of having an AVM...and yes, there ARE a few!
So last weekend I spent time at a little cra… Continue
But here is an example of exactly why I am positive, and why I continue to be confident in public and to smile and see the positive aspects of having an AVM...and yes, there ARE a few!
So last weekend I spent time at a little cra… Continue
Posted on October 26, 2009 at 12:43am — 13 Comments
#20 marks my 2 yr anniversary with Yakes!
Just got back from Denver again for embo #20. It's hard to believe that two years has gone by since I started seeing Dr.Yakes. How time flies!!!
This trip was a hard one for me. They can't all be easy and I know that, but boy do I hate the tough ones. Everything stated out fine and I a had good time showing off my Super Spooky Halloween gown. There weren't many patients in for the day which just means the entire staff had more time to play with me in pre-op!
But waking up post op I had quite a… Continue
This trip was a hard one for me. They can't all be easy and I know that, but boy do I hate the tough ones. Everything stated out fine and I a had good time showing off my Super Spooky Halloween gown. There weren't many patients in for the day which just means the entire staff had more time to play with me in pre-op!
But waking up post op I had quite a… Continue
Posted on October 11, 2009 at 10:16am — 17 Comments
Comment Wall (887 comments)
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- At 1:25am on March 8, 2010,
Kate Brennan said…
- Hi Shalon, How are things with you? I had my follow up in December and things seem to be progressing but now they have discovered some haemorrhages behind my left eye so I am going to see an opthamologist now too. P.S. I don't have any relatives named Liam :O) P.P.S sorry it has taken so long to reply.
- At 4:42pm on March 7, 2010,
Shana said… - Shalon, thanks for the welcome! Yes, I am going to see Dr. Yakes next month. What a small world! My treatment is on the 8th as well! No, I've never had an embo before. I've heard great things about Dr. Yakes and his staff. The vascular surgeon who recommended him to me said Dr. Yakes was the best, and at first I thought, "Yeah right, he might be good, but surely he's not the best." I came home and started researching him and quickly realized that I was wrong, that he definitely is the best. So, I've had to fight my insurance company for several months to see him, but I refused to get sent to someone who only occasionally treated AVMs or someone who didn't offer a cure. Dr. Yakes' staff has already been so helpful and so nice and they worked really hard to make sure my insurance company would let me see them. Wow, #25?! So you're pretty much an expert embo patient :-) I will definitely let you know if I think of any questions. Thank you, and good luck to you too! Shana.
- At 7:42am on February 11, 2010,
Barbara Thomson said… - Once again, thank you......We will most definately keep everyone updated as to her progress, until then we can't thank you and the other members enough for all the thoughts, prayers and info.....
- At 4:32pm on February 10, 2010,
Barbara Thomson said…
- Thanks Shalon for getting back to me. My daughter has made an appointment for Alivia with Dr. Waner in New York, so we will wait anxiously until the day comes to see him. I will keep you as well as all the AVM members in my prayers.
- At 7:13am on February 10, 2010,
Barbara Thomson said…
- Dear Shalon, I am new to this site, my 3 year old grandaughter was just diagnosed with AVM of the left cheek. You have such a positive attitude that it makes my heart smile....At what age were you diagnosed? Are there any thoughts or suggestions on where we should go from here? I have had another member give us some contacts which I so appreciate but as I'm sure you know, we are frantic on finding out as much as we can. Thank you for any info you can give. You are an inspiration!
- At 3:11pm on January 31, 2010,
Ameenah said… - Thank you, I love my gift !!!!!!!!!!!!!!
- At 8:06pm on January 28, 2010,
marianne elizondo said… - Hello Lovely Lady .
Did you read Chantelle yet ?
I hope the days are as good as they can be ...you always make them better .
Be good to you . Take care of you .
- At 8:45am on January 26, 2010,
Susan Troop (Lindsey's Mom) said… - Thank you so much for the gift!! Your gowns are sooo cute. I made two for Lindsey, but nothing like yours! I actually don't really know how to sew, but was able to figure out the easy pattern that I found. Even the silly one I made, got tons of compliments from the nurses, since it was soooo much cuter than the ones that they provide. It really did help her mood, and help her to be more comfortable.
Lindsey's recovery has been remarkable. She has no pain whatsoever, and isn't even sleeping a ton. You would hardly know she had surgery (except for the 25 stitches on her head, ha!) Her surgeon said she could go back to school next Monday, but we'll see about that. That's only 11 days post-op. Sounds crazy to me!
Again, thanks! You are such a beautiful person!
- At 6:00pm on January 25, 2010,
Kristina said… - Thank you very much. I wish I had known about this group before I spent the first 18 months scared out of my mind.
- At 4:23pm on January 24, 2010,
Melinda said…
- Re: Alcohol treatment with leg avms: I'm a toxicologist with a soon to have PhD. I'm as close to an anatomy person as possible. :) In vitro and in vivo, alcohol causes what's called necrosis, it kills stuff. That's how the alcohol embos work. They shut down the fusion by killing the cells involved. By being so close to bones, skin, etc. I've talked to radiologists and other doctors that have only used the alcohol ones in some place other than the legs. It's crazy. I'll tell you it's the reason why I got a PhD tho. I don't trust doctors as far as I can throw em. I've been dealing with this 25 years, and don't believe they know more than me. :)
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