I have alcohol running through my veins!!!!

Literally...well, ok not really. But I do get alcohol injections about once a month (and not the "fun" kind!)

I have a facial Arteriovenous Malformation (AVM) and am receiving ethyl alcohol embolizations with Dr. Wayne Yakes in Denver.

So while the alcohol isn't actually running through my veins (that would be really bad) it is being injected into them to destroy the AVM vessels and eventually provide a cure!

Check out my website to read my story about life with a facial AVM, meet my doctors, and stay up to date on my treatments through my "Denver Trip" reports!


Sunday, August 31, 2008

Camellia's AVM

Just wanted to post a link to a website for Camellia!

Camellia is a beautiful little girl with a facial AVM. Her story has many similarities to mine as a child. However, it sounds like she is having a rougher time than I did at that age. But luckily, she is already being treated by Dr. Yakes and although this treatment is hard for such a little girl, I hope that it means Camellia will grow up healthy, happy, and AVM free!!!

Camellia's mom keeps an online journal detailing their journey and treatments. Please visit her site and sign her guestbook!!!


Thursday, August 28, 2008

Keith's pictures are up!!!

Timeline pics for Keith are up on my website. Here is a quick preview...

If you have forgotten his story, check it out in my earlier blog post titled "Another Facial AVM" dated 8/5.

Tuesday, August 26, 2008

Angiogram screen shots

I updated my picture link with new screen shots of the Angiograms for each of my AVM treatment's through July.

Totally weird and it looks like the metal coils are just "floating" in my face. But really that is the big "tangle of spaghetti noodles" that is the AVM and the coils are all smushed into them!

June's treatment is like inverted with the dark/light stuff. Kinda fun compared to the others...

I actually have the entire series of pictures which shows the dye going into the vessels and progressing through. But I'm not exactly sure how to get that into a "movie" that you can see. Anyone with technical expertise that wants to help me??? I only pretend to know what I'm doing. ;)

And a bunch of the coils are made of platinum...maybe when this is all done I can melt it down and make a keepsake bracelet!!! Would that be weird?


Sunday, August 24, 2008

Fries on the brain...

Totally off topic...

Josh & I did a day trip to SJ yesterday for Morgan's first birthday party. It was nice to see our Hubbards since it has been like 10 months! Yikes!

Anyways, it became apparent only a few miles down the road, that my husband was craving fries... Seriously you should all know that EVERY song on the radio can have it's lyrics adjusted to somehow include a line aboout "with fries." And even better...curly fries!!!

It got so bad even I was chiming in with the fry lyrics... And yes, we do realize we are total dorks!

I challenge you all to try it next time you are in the car and can sing to yourself... it's a full proof theory, promise!

Friday, August 22, 2008

Cyndi's timeline

Ok- I updated the picture page on my website with a timeline for Cyndi starting at 28 until this weeks embo! Her blog is also up and running if you want to find out more info about Cyndi's story, check it out here.

Now I just need to get confirmation from Keith on his.

And eventually my AVM-sisters, Steph & Andrea will get me some pics also!!!

Updated pics!

So Cyndi sent over the pictures she took of us from this week! I have to say again that she makes me feel like a wimp...but oh well, we all have varying degrees of this AVM and all face different challenges.

Here is a just one pic, but to see all the them, check out the slideshow on my website.
I'm also going to be adding some additional photos of Cyndi, and some of Keith once I get them all put together in a timeline slideshow!
Hope you all are enjoying my unlimited AVM posts!!!

Thursday, August 21, 2008

Back from Denver...and I'm a snob!

We just got back from my 7th trip to denver for treatment. Everything went well and I'm feeling great. We got to meet Cyndi (another Yakes patient I've been emailing with) and Eric the new PA.

And although many of you have never doubted my "snob" status, it is now official! I can no longer deny it with the proof written clearly on my Denver Trip Log 7. You will have to read it if you want the proof!

I'm glad to be home and in my own bed. But I wanted to say a BIG THANKS to Jenn & Allen Astwood. Jenn for being soooo generous with her offer for Josh and I to stay at her vacant Denver condo when I am in town for treatments, and Allen for taking the time to meet us at the condo, give us a quick tour, and hand over the key! You two were lifesavers this trip (as evidenced by my snob story!)

I've also updated my "Timeline Pics" on my site. I'll also be adding some pictures of my angios & MRI's, Keith, and Cyndi in the near future- so check back to my pictures page...although I'll post up here when they are ready also!

7th treatment down...who knows how many to go!

Sunday, August 17, 2008

Denver here we come!

We are heading to Denver on Tuesday and I will have treatment #7 on Wednesday. Josh is coming with me, so I'm sure he will keep the "regulars" in the loop by email. I'll try to post up here Wed night or Thurs morning, and will add an update to my "Denver Trip" page on my website soon after that.

We had a hard time getting a hotel this trip! Apparently the DNC is using up all the rooms everywhere even though it isn't until the following week. Room hogs!

If everything works out, we will be meeting Cyndi (another Yakes patient) on Tuesday! We've been emailing for the last few weeks, and it just so happened that our next treatments were the same week and we will be in Denver at the same time. So that is fun! We will be sure to get a picture together and I will post it up here. I'm sure Cyndi will post on her blog too...if she ever gets it going!!! :)

Friday, August 15, 2008


So I'm going to try to be cool and have this real blog as opposed to the "fake" one I had on my website (since google sites doesn't let you have one...dummies!) I'll link to this blog from my site instead.

I hope it will allow people to keep better tabs on me and my story. The previous posts have all been added on here with a note about "original post date."

Please subscribe to my blog so that you know when I have updated!

Thursday, August 14, 2008

Random place for my website to show up!

So Josh had posted my site on his LandCruiser forum a while ago just to chat with his LC friends and such.

Today I was looking for AVM info and found a website affiliated with Stanford called "wellsphere." I'm not exactly sure what it is, but they have an area called WellMix 360 and it shows trusted sources, web results, blogs & news, etc. http://stanford.wellsphere.com/wellmix360/arterio-venous-malformation

Anyways, Josh's post on Ih8mud comes up under the "blog & news" section. So that was neat. Totally random and round about...

Tuesday, August 12, 2008


Just wanted to say a quick thanks to eveyone who participated in our fundraiser this weekend. It was a perfect weekend for our goodies. Not too hot (like it can be in Sacramento in August!) but just warm enough to make our summer time treats hard to resist! We sold lots of popcorn and snow cones and handed out quite a few "business cards" to help spread the word about my website. I really appreciate the donations we have also received from both friends and strangers. It is so wonderful to have so much support!

Also, wanted to say a special thanks to Carrie, Jenn, & Danielle for organizing and running this event! You ladies are the best. xoxo

Wednesday, August 6, 2008

A little less scabby today

So when I got to HBOT today I noticed that the gigantic scab on my face from last months embo, was kinda loose and hanging. A little nudge and it came off (I promptly threw it on the ground and stomped on it with a "good riddance!") So now there is a little bit of an ugly scar, but who cares! It is much better than the wound. I updated my "Timeline Pics" with a new one from today w/o the scab!

Now I just need my lip and my hole to finish healing! Progress!

Tuesday, August 5, 2008

Another Facial AVM

I have been emailing for the last few days with a guy who also has a facial AVM. He has opted for surgery instead of embos. Him and I have had a friendly debate over the benefits of each treatment and agree that we would make a great "case study" to see how the two options are both similar and different, which is better, and what the long term results are. So here is the story he sent me detailing the last 32 years for him!

I was born 8/9/76 with what appeared to be a port wine stain on my right cheek. My parents were told it was a hemangioma and would go away by the time i was 6 or 7. It didnt. My parents found a surgeon to speak with (Mt. Sinai hosp) and his recommendation was surgery (at this point the term AVM didnt exist). My parents (and i guess myself, i was 6) felt that was a drastic route to take so they sought another opinion, a Dr. Sedak Hilal. He had a new procedure (that i believe he was part of pioneering) called embolization. A non- surgical way to control the growth. So rather than a massive invasive surgery, we could work on it with a non-invasive, less risky, procedure (though still very risky, stroke, etc) I had 2 embolizations at the age of 6 1/2 and 7. Then another at 10 (with minimal improvement in size, it would come down, then pop back up (it was always swollen, even from birth).

At the age of 14 or so (when i hit puberty) we saw a large growth in the AVM and decided it was time to explore surgical options. We met with a Dr. Mark Sultan (columbia presbiterian, recomended by Dr. Hilal). And the plan was to operate (nov. 19th, i remember that date well for some reason)...but in the preparation for this i had visited with a neurosurgeon who felt that the AVM was too massive and that any attempt to remove it would be seriously life threatening. So we backed out and I had 6 embolizations in a 9 month period (my 10th grade of H.S). Dr. Hilal also had developed an experimental substance (he called the Hilan Gel) similar to the glue they now use...it worked, but again not for long.

At the age of 17 it began to grow again, this time more than ever before. It got to a point of ulcerating the skin and bleeding from the surface (up to this point, unlike you, i had never dealt with bleeding). This scared me, so i sought a dr. that Dr. sultan had said he had trained under in Boston, a Dr. Mulliken. He saw me and said there is only one thing to do. and i quote "Remove that sucker." He at the time had operated on 12 AVM's similar to mine and that was considered alot. He was considered at the time ('95) the worlds leader in this. So we went ahead with the surgery. 2 preop embolizations, and 21 hours of surgery later, I made it. They had to use skin and tissue from my abdomen in whats called a tissue transfer to make up for the loss of pigmented red skin etc.. It looked ok, but one more surgey later, it looked alot better. I had another surgery in '97 then again in 2000.

The problem now is regrowth. It continues to want to proliferate itself. So from 2000 to 2004 i left it alone, fed up with it really. It continued to grow. So finally in 2004 i decided to go back tothe dr's i once saw in NY (dr. sultan) and see what if anything new is out there. He sent us to Dr. Alejandro Berenstein (who you should know, the pioneer of the alcohol embolizations, and the absolute best at what he does (endovascular surgeon))...He told us about this amazing doctor, Dr. Waner, who is coming to NY soon. Timing was perfect as I was one of the first patients he treated in NY. He operated in 2004, then i had follow up cosmetic procedures (3 of them) with another surgeon (which didnt work out so great) But am now back with Dr. Waner ( i had my most recent surgery in April, i have one scheduled for october and then, i think thats it. Hopefully. And it looks amazing.

To blog or not to blog

So I'm totally annoyed that Google Sites doesn't allow you to have a REAL blog on your site. I'm thinking of ditching this fake one and just linking to a blogger site. Plus maybe that will help spread the word a little more, since there would be another place for people to "find" me.

I have been talking with a lady in TX, Cyndi, who has a facial AVM and is being treated by Dr Yakes as well. I bullied her into letting me create a blog for her so that she can post updates about her journey. Once it is ready to go I will link to it as well for anyone who is interested.

Saturday, August 2, 2008

Website is all up to date!

I finally finished updating my trip reports under the "Denver Trips" page. All of the Medical Mumbo Jumbo took a long time to type up and a lot of spell checking!

I also wanted to say thanks to everyone who has signed my guestbook and sent me emails with such wonderful and encouraging words. I really do appreciate all of the support from family, friends, and strangers (new friends!) I've also been very welcomed at the new AVM Support Network that I joined. It is mostly "brainers" and I haven't heard from any "no-brainers" yet but still am excited to have found the website.

I'm feeling well but still super freaked out about the hole in my face. It is seriously gross and actually leaks grodiness like saliva, water, or whatever I put in my mouth! Brushing my teeth is fun cause when I rinse my mouth it comes out my hole... Ya... But I'm learning how to keep it to a minimum and seriously trying not to imagine it healing without closing up and leaving a permanent hole in my face! But normally I don't have that kind of bad luck. In my family we leave bad luck to my sister Taryn!!! ha ha ha