Cyndi is Superwoman!

Many of you are familiar with Cyndi, a fellow facial AVMer and Dr. Yakes patient! She has had a very rough month since her last trip to Denver in November. But she always manages to stay strong despite what this AVM hits her with. Her struggle has been so much harder than mine and I am in awe of the grace and courage that she displays.

She is also very lucky to have a great family, supportive friends, and a WONDERFUL husband Mark.

Cyndi just got out of the hospital (again!) and has updated her blog with this latest adventure... So head on over to her site and read about her AVM journey!

Hope

Hey everyone.

First of I want to say that I am feeling very well. I know that my recent blogs haven't been as "sunshiney" as I normally am. But I know you all understand. I am over my recovery, over my cold, and back to being Shalon.

Some good news, Nathan is still fighting. He may have suffered some serious damage but with this kid, you have to think that he will overcome anything that happens. He has been through so much in these first 10 months, and yet has always suprised everyone and come out on the positive side of the ugliness. Here is the most recent posting by Jaimee. Please continue to hope for the best.

Camellia was in yesterday for another embolization with Dr. Yakes. Everything went well and the lucky little girl got to have Gelato for dinner!!! You can check out the latest journal entry from Margie at her Caring Bridge site. (Permanent link is over to the right.)

I've also updated my picture page on my website and this blog with a link to Maddy's new Caring Bridge site created by her mom Sherri. Please check them out.

This morning I read a posting on Camellia's site from their friend Beth. She added a link to a website called Peace of our Minds, and the following peaceful passage.

'An elder Cherokee Native American was teaching his grandchildren about life. He said to them, 'A fight is going on inside me...It is a terrible fight, and it is between two wolves. One wolf represents fear, anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, pride, and superiority. The other wolf stands for joy, peace, love, hope, sharing, serenity, humility, kindness, benevolence, friendship, empathy, generosity, truth, compassion, and faith. This same fight is going on inside of you and every other person too.'

They thought about it for a minute and then one child asked his grandfather, 'Which wolf will win?'

The old Cherokee simply replied...'The one you feed.'

What a great peaceful passage. I will take this to heart and try my best to only feed the wolf that stands for all of those wonderful things that I want as part of my life. The other wolf hopefully will starve!

I hope everyone is enjoying this holiday season and that you will get to celebrate with family and friends this year.

xoxo
Shalon

Very Sad News

I'm so saddened to hear the news that our little Miracle Baby, Nathan Andaya, is losing the battle to his AVM. He has been a courageous little fighter, and so have his parents. When I logged onto the message board this morning, I read the following post from Jaimee-

Nathan Andaya..the Lord will be calling him home

i don't even know how to start this..

first off, I would like to say thank you to everyone here on this forum who has been there for us throughout this whole battle..your encouraging words, prayers and kindness mean so much to us..

unfortunately Nathan will not be making it..initially one of the two main veins clotted..and now the second one had clotted off (due to high pressures of the AVM)..unfortunately there is nothing the doctors can do..right now Nathan's brain continues to swell due to the increasing pressure..he is on morphine and tylenol to relieve any kind of pain..we have been placed in a private room so that family members and friends can come to say goodbye..we were given an estimate of 2-3 days starting from today (dec 6th). The last CT scan revealed that Nathan had already suffered from strokes and additional severe brain injuries..right now he is currently sleeping..he is still being monitored but we decided to take off his feeding tube..

thank you everyone for being such a blessing to us..please pray for Tj & I...God bless

You can read Nathan's story on his website http://www.nathanj125.com/ and his mom's blog postings at AVM Survivors Network

Please keep them in your thoughts and prayers

Lot's of updates!

Hello everyone!

I hope you all had a wonderful Thanksgiving holiday. I know that I have many things to be thankful for, including all of our friends and family that continue to be so supportive of Josh and I through this AVM journey!

I have many updates today. :)

My Trip Report is up on my website for Trip #10.

Added a couple of pics to my Timeline, as well as to the Meeting Cyndi slideshows.

More photos of Nathan "our miracle baby" have been added.

I've recently been in contact with Arie and her mom Jody, another Yakes patient, and have updated with pictures of this beautiful little girl and a link to her story. I'm so jealous of all of her freckles!

Also, check out Cyndi's blog to read about her most recent adventure in Denver!

I think that is it!

As for me, I'm finally starting to feel like myself again. Still not quite 100% but I'm doing well and feeling much better. Josh has been taking care of me and you all know how much I enjoy being spoiled by him!

Hope you all have a wonderful day!

xoxo

Nathan's Craniotomy a success!!!!

What wonderful Thanksgiving news! Nathan's surgery yesterday was a success and he is doing well. I'm so happy for this beautiful little family and it is such a reminder that we have many things to be thankful for in our lives. Not everything is easy or the way we want it to be, but even in struggles and hardships there are great things that happen!

Here is the latest post from Jaimee on Nathan's progress!

http://www.avmsurvivors.org/profiles/blogs/happy-thanksgiving-thank-you

Trip #10...not my favorite!

Hey everyone,

Sorry for the delay in posting an update. This has been one of my harder recoveries and I just haven't really felt up to typing a posting. I'll update my trip report soon, cause the trip was a pretty good one...just the recovery sucks.

I'm pretty swollen this time. The first night my throat swelled up so much that I couldn't even swallow my pills. My sister had to crush up my Prednisone & Vicodin and put into water for me to drink. New plan-no water, add to juice!!! It was seriously grody and I didn't think I was going to be able to drink it! But I'm a trooper and got it down. Luckily, my throat is almost back to normal. Although I still have very little voice...I'm all raspy...

My face is still very swollen, including the area by my temple. And my ear is totally plugged up and driving me crazy. I've also had some bleeding, both from my gums (which was already happening pre-treatment and is really just some oozing although it seems to be more than before Friday.) I have an area inside my mouth where the wound used to be that now looks like a little blood blister. And ya, been having ugly arterial bleeding from that. No fun... I stayed home from work today and don't see being able to go in tomorrow either. I'm just a miserable little girl at the moment :(

But I think the treatment went well and I have just been spoiled because the last few have gone so well. Gave me a false sense of this being an "easy" journey. How quickly I forgot the sucky part! But how lucky for me to have had the opportunity to forget the sucky part!!!

So sorry for the sad little posting, I'll be better soon, update my trip report, and be back here with a much better blog posting!!

As always, thanks for the support and well wishes. It means the world to us!

Please keep Nathan in your thoughts and prayers!

Nathan is a little baby who is dealing with multiple AVM's in his brain. Earlier this year, they thought they had treated it completely. Unfortunately he has suffered a set back and is at UCSF with a pretty ominous prognosis.

You can read about his story here. http://www.nathanj125.com/ and the latest news about his condition here http://www.avmsurvivors.org/profiles/blogs/ominious-prognosiswe-might

What a difficult situation for this family to find themselves in. I really would appreciate all of the prayers, healing thoughts, whatever you can send to Nathan!!!

Another AVM survivor

I got an email this morning from Donna, a woman whom I have been emailing with who has a brain AVM. When we first began talking, she was having embolizations for the AVM and was in alot of pain from severe headaches and other side effects. She ended up needing to have surgery instead of continuing with the embo's because her AVM was causing heart problems.

I continue to be amazed with the different symptoms and side effects of these things. Donna's arteries were so enlarged that when she swallowed, a nerve was being constricted causing her to become lightheaded to the point of blackouts! It also would cause her heart rate to drop drastically and then her heart was working overtime to catch up! Crazyness!!!

Anyways, the surgery was a success and she can now claim to be an AVM Survivor! She still has the road to recovery and will need some therapy, but feels like the worst is behind her.

Such wonderful news and I couldn't be happier to be a small part of her experience and to be able to share in her joy! Please keep Donna in your thoughts and send her some good healing vibes!

Being able to make contact with all of the wonderful AVMer's has been a surprising benefit to such an ugly medical issue. I never anticipated that I would experience such joy and happiness from anything related to this AVM. But I am glad that I have the opportunity!

Shalon

A fellow AVMer's beautiful words...

Heros' Undercover

We are the lights to the world that some thing is wrong, we suffer so the truth can be found, and fixed. In the past Miner's took a little Sparrow into the mine with them, so the miner's lives could be saved. The little sparrows' gave their lives, and this warned the Miner's that poisonous gases where in the air. We are the massagers, we are loving and sensitive, we are chosen to be the beacons, too shine the light on the unknown. Deep in our hearts we know; others could not endure the physical and emotions pain we have lived thought. We are the heros' under cover.

This message was posted as a blog by Karen Robertson at www.avmsurvivors.org

She was nice enough to let me borrow and share with all of you.

AVM treatment #9!

Is that kinda like "Love Potion #9?" Well....maybe not so much!

We are back from our 9th trip for treatment with Dr. Yakes. Everything went well and I'm feeling great. I've posted my Trip Report on my website with all the fun details about our time in Denver. I'm most excited about the new pre-treatment "treats" I'm planning on giving myself with the opening of Dr. Reed's new Spa!

After taking care of the AVM stuff, we were lucky enough to have time to take a drive up the road to Berthoud Pass. It was a nice Saturday morning and I felt good enough for a quick little trip. It was definately a change from just rushing in and out of Denver. We hope to be able to do some more "relaxing" exploring as we make our future trips for treatment.

The drive was roughly 75 miles each way and we drove through some beautiful country. Unfortunately we did miss most of the colors of the Aspens, but were able to see some brilliant yellows and oranges on those still hanging onto their leaves. At the top of the Pass was the Continental Divide so that was a fun little landmark to take a quick picture. We didn't have a real camera with us, so these pics are just from the iPhone...but not too bad considering! Next time we will have better pics.

Some of Josh's LC friends told us to stop in a tiny town called Empire for ice cream. I was looking forward to that, but when we arrived, the entire town was closed down for "Scarecrow Days" and I didn't get any ice cream! Meanies!



We arrived home Saturday night and I've just been trying to take it easy, rest, and let myself recover. But you all know that I'm not always as good at doing that as I intend! I'm trying, promise! Josh is of course the best husband ever and takes care of me all the time. He is right now making me dinner since I was just gonna go with Halloween Candy for the night! How sweet is he to make sure that I get real food?!?!?

Hope everyone is doing well. As always, I sincerely appreciate all of the kind words, well wishes, and support. I do tell people all the time that I have the best family & friends...and I actually believe that is true! I couldn't remain as positive and as confident in this journey without all of those surrounding me and keeping me where I need to be.

Hugs & Kisses to everyone!!!
Shalon

Off to Denver again!

I'm sticking to the 4 week schedule and am on my way back to Denver. Josh and I leave tomorrow morning and are trying to decide what kind of "winter" clothes to pack for the cold weather. The forecast is for a high of 50 and low of 27 tomorrow in Denver, as opposed to the high of 85 and low of 52 here at home...Yikes! I'm gonna have to bust out the snow gear or something. (This pic is from last winter when we drove up to Ice House Resevoir to let Huddy play in the snow. I'm thinking of finding that hat and matching mittens!)

We are going to be seeing Dr. Reed at a different office than the normal DT Denver one and I'm all ready to give my report on his HGTV show! Then we are going to meet up with Steph and fam in Denver for dinner at a yummy vegetarian restaurant! Poor Joshie, forced to eat tofu!

We hope to take a nice drive and see some pretty fall scenery on Saturday before heading to the airport. We'll see if I'm up to it, or just a sleepy head.

No internet at the condo, so I'll probably post up Saturday night or Sunday morning once we are home!

Shalon

New Pics of Keith!

Keith had his most recent surgery on Oct 6th. basically cosmetic and reconstructive, they were able to "fix" some areas that were not symetrical and have also reduced the scarring. Apparently Dr. Waner uses some type of laser treatment to help the scar blend in with the normal tissue.

Anyways, the results look wonderful. While Keith has some nerve damage that has cause him some issues with his eye, and also being able to smile... I think the difference in appearance is amazing. In some of the pictures, you can hardly tell that the AVM was ever there! What more could you ask for?!?!?!?

Here is a great picture of Keith after the latest surgery. To see his entire timeline, check out his pictures on my website.

Trying not to worry...

I've been super happy for the last few weeks because my lip is finally healed. It was an entire year of dealing with this wound, pain, and bleeding. Not having to deal with it anymore has made me feel like a "normal" person again!

But the last few days I've had slight bleeding inside my lip. Not really a big deal, but it is making me just a tad nervous. I can't really decide what is going on. There is no cut and it doesn't really look like tissue breakdown. But the skin itself is all weird and different from scarring. I don't know. I just hope it doesn't get worse. I like being normal!!!

On a more positive note, Huddy has been super lovey dovey with me this past week. He typically is more interested in Josh than me, but he was waiting in the window when I came home last night, and then ran over to give me hugs when I walked in the door. What could be better than hugs from your doggy???

Dr. Reed's turn in showbiz!

Dr. Reed's episode on HGTV's new show "My Big Amazing Renovations" premiers tonight at 9:00 eastern time!

For those of you who aren't sure what I am talking about, Dr. Reed is the ENT that sees all of us "head & neck" AVM-ers before each treatment by Dr. Yakes. He makes sure the airway is good to go so that we can breathe during & after treatment!

He somehow managed to get himself involved in this TV show when he did a "small" remodel on his home in Denver. I've promised to give him a full recap of how they spin his story and how correct of a portrayal they do of him. So I've got my notebook handy for tonight and will be reporting back to him next Thursday when I'm in Denver for round #9!

If you miss the episode, don't worry they are going to replay it 4 other times during Oct & Nov!

It's all good!

Just wanted to quickly post that all of my AVM friends had succesful treatments this past week.

Keith was home the same day and sent me an email (while still all drugged up!) which said that they did even more "fixing" than originally planned. I am so excited to see his new pics in a few weeks.

Cyndi & Camellia were at Swedish the same day, but schedules conflicted and they weren't able to meet up. Both had successful treatments.

Cyndi did have a little drama this time around...what can I say, we are all drama queens! Check out Cyndi's blog for her trip report.

Margie, Camellia's mom also posted on her site details about their trip. With the best news of the week that Dr Yakes found no additional AVM in Camellia's mandible and also confirmed that it had not spread to her tongue! Good news all around.

As for me, I'm still feeling really well. Have had a little pain under my cheek bone the last few days and noticed that it hurts to open my mouth very wide. But I'm sorta thinking it might be a sinus infection or just allergies with all the crazy wind and fall weather we've had this week. So I'm gonna go with that instead of it being AVM related!!! :)

Keep everyone in your thoughts!

This is a popular week for my AVM friends! Maybe not a "fun" week for them per se, but busy. Cyndi and Camellia are both making trips to Denver this week for treatment. Not sure if they will be at Swedish at the same time, but just maybe they will get the opportunity to meet in person. Also, Keith is having reconstructive surgery which I believe is his last! So hopefully I will have some updated photos of him soon with his beautiful AVM free face!

C,C, & K- I'll be thinking of each of you this week, hoping for all good news, and sending hugs across the board!

Shalon

Trip #8 down!

Just got back from Denver and have now completed 8 trips. So I'm well on my way to being AVM free. The trip went well and I'm feeling strong. Just a minor amount of swelling this time, but lots more "hard" area's in my cheek. It is probably the weirdest part of this treatment...to end up with hard areas. And then those areas sorta stay looking swollen. But whatever, I seriously could care less about that and it will eventually all go away with plastic reconstruction.

I've updated my website with Trip #8's report and all the details including my H3 experience, and Dr. Reeds fun venture into Showbiz!!! Yes, he really is going to be on TV and I'm ready to give him a full report on my next trip in October!

Again, a super huge thanks to Jenn Astwood for letting us stay at her Condo, and to Herdis for meeting us for the key exchange!

My lip is now totally healed! Yay! Just a little unstable, but no more wound. It is so nice to be able to actually put some chapstick on and rub my lips together like a normal person! Not to mention Josh can finally kiss me again! :) I guess that should have been the first thing I listed... :)

Thanks for checking in and reading my blog and website. I really do appreciate all of the support.

Andrea's AVM story!

Andrea has posted her story and her BEAUTIFUL picture up on my website! Please take a moment to visit my AVM Sisters page, and read about her experience and the battle she is facing to get approval for alcohol treatments.

She has been dealing with complications from her AVM, all the while preparing for and fighting her denial through an appeal. What a strong and determined woman! I'm so glad to have her as my "AVM Sister!"

So many new friends!!!

It has been so exciting for me to make contact with others dealing with an AVM. You all know about Stephanie and Andrea, my first AVM sisters. Then there is Cyndi whom I was able to meet in person on my last trip to Denver, and Keith who has now promised to let me be a star in his movie! (Yes Keith, I've just promoted myself to the star...it's all about me!) And most recently I have introduced you all to Camellia, the most beautiful little girl!

But I'm lucky to be in touch with other AVM-er's as well. From Alaska, to NY, Hawaii, and even Cypress! It is so great to make these connections and to share our experiences. Each of us has such a unique experience, yet we still can relate to each other.

A few nights ago I spent an hour and a half talking with a woman who has an extensive facial AVM! She has had lots of surgeries, embolizations, and complications I have never dreamed of!!! Time flew by as we shared stories and talked about our families. By the end of the conversation we had even promised to become each other's "reality" check when it comes to avoiding stress! (She's even more of a control freak than I am! )

I've also found such a wonderful supportive community at the AVM Survivors Network. I don't know that I have ever seen such a great group of people who are so welcoming, friendly, and interested in helping each other. It is a great place to be!

When I decided to post my story online, I was hopeful that I would find other people like me. I'm so thrilled with the response that I have recieved, and for the new friends I have made!

Go away Scabbies!!!

I'm almost scab free!  The last of my bulky scab came off two days ago and I have just a thin little layer covering the left side of my lip.  Just a very little wound still hanging on.  It's actually been getting worse for the last few days.  Had a few very small bleeds in the past week as well.  But seriously small and easy to deal with.  Yikes!  I'm trying not to equate the tissue breakdown with the fact that I have just gone back to work...maybe it is just a coincidence?!?!?  I'm keeping an eye on it and will probably call Rhonda or Julie next week to get their opinion on it.

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!!!

http://www.caringbridge.org/visit/camelliaschaner

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.

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?

Shalon

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!

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!!!

Shalon

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!

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!!! :)

Moving!!!

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!

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...

Thanks!!!

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

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!

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.

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

Hole in my face!!!

So ya...the new wound on the side of my face has a hidden bonus!

I actually have a hole going from the inside of my cheek all the way to the outside where the scab is. Grody! And it's infected...again. I'll spare you all the seriously gross details but let's just say that this is not my favorite new manifestation of the AVM. Otherwise I'm feeling pretty good. A few bleeds over the weekend, one more concerning than most. I saw my dermatologist yesterday (I haven't seen her since April) and she was very excited about the change in my face and lip from the embos. She said she could definately notice the decrease in size and that the coloring was looking better. So that was great to hear!!!

My first blog

So this is my first post for my new "blog." And the entire point is to tell you all how I am feeling and coping with the AVM and treatment. I promise that no other updates will be this long! But as the first post, there is a lot to tell you!

I’ll start out by saying that six treatments into this journey with Dr. Yakes, I have realized that I was not prepared for all that this would entail. I thought I was totally capable of continuing life as normal and doing these treatments as often as my life would permit. I was going to fit it into my schedule and make it work on my time. For those of you who know me, you know I’m just a “little” bit of a control freak and perfectionist. And by little, I really mean a lot. So even though I knew that once I jumped into and commit to this endeavor that it would impact my life, I really thought I would be able to control how much of an impact it was going to be. But this AVM has a mind of it’s own lately and has completely humbled me and shown me that I am not the Super Woman that I thought I was, and that control was something I had to accept was not going to be mine.

I’m feeling pretty good right now as I type this. Sure I look like a poster child for domestic abuse and I’m rather afraid to be out in public due to the continuous fear of bleeding, (like at the grocery store the other day...how unsanitary is that?!?!?) but I feel rested and stronger than I have in a long time. If I had written this only two months ago, it would have been a completely different tone and a completely different story. May 20th was when things really fell apart for me. It had been coming on for a while, but that was the day that did me in.

For months I had been in a lot of pain. The most pain on a continuous basis as I have ever experienced. I was taking Tylenol like it was candy, knowing that this excess was bad for my kidneys. But that was the least of my worries and at least something that I could joke about. I couldn’t sleep and I was run down, seriously. This was in part due to the pain but also because I was afraid of bleeding in my sleep and not knowing. See the wound on my lip continued to deteriorate and I began to have bleeds directly from the wound. My previous bleeds had all been inside my mouth. As gross as that is, I would wake up at the taste and could take care of the bleed. But now I was worried that I wouldn’t know. That I wouldn’t wake up and that I would lose a lot of blood before I was aware.

But I soldiered on, cause that is what I do. I tried not to let it affect me at work and I tried not to really let on with my group (I manage 14 employees) how much pain I was really in and how much this was really wearing me down. But they could tell, and they were worried. No amount of parading around in new high heels (really I don't have a shoe problem) was going to distract them from noticing the change in me. I didn’t want to show my weakness but also was grateful for the genuine concern that I got from them on a daily basis. I really only shared my struggle with a few people at work, including my girlfriend Janine. She was the person that helped me through my scary bleeding episodes at work. And it was her that started trying to convince me that I needed to take some time off from work and focus on my health. But that would be admitting that I wasn’t capable of doing everything and I just wasn’t ready to admit defeat.

Then May 20th rolled around. I was actually only working a half day because I was headed down to UCSF to meet with the Chief of Plastics to get an opinion on what to do about my lip! All of my trips to the dermatologist had not provided any real results and she had finally decided that she just didn’t have the expertise to deal with the AVM aspect of my wound. But before I could even make it halfway through the day, I had a bleed at work. And this one was super scary, not to mention embarrassing. I was talking with a vendor in the lobby and literally had to run away from him as blood started pouring down my face. I ran to the bathroom but had so much blood on my hands that I couldn’t get the medicine cabinet open to get some gauze. I busted into our training center where I knew Janine was in a meeting and she ran to help me. Of course I was able to stop the blood flow, but the bathroom was a mess and we basically had to “quarantine” it until it could be cleaned up. I was shaken and embarrassed and just unhappy.

Josh came to get me, and we headed down to the city to meet with Dr. Hoffman. Unfortunately my day just got worse as he recommended that in order to close the wound, we do surgery. He suggested cutting a chunk out of my lip where the wound was, treating some of the AVM tissue in that general area, and then hoping the new wound would heal up. We talked in length about potentially just going in and cutting out the AVM altogether. I was honestly devastated. I didn’t want to do a surgery. All of my doctors up until that point had warned against trying to surgically remove the mass. I was worried about the amount of AVM flow in the area and what kind of can of worms would be opened during surgery. I worried that there was too high a risk for blood loss and damage. And I couldn’t logically understand how creating a bigger wound than I already had was going to instigate healing. I was scared and tired and just confused.

I took the next day off from work, and the next. I talked with Dr. Hoffman by email, and I talked with Rhonda, Dr. Yakes PA, over the phone. I decided that I did not feel like surgery was a good option. I was scheduled for another trip to Denver the first week of June and decided I would have Dr. Yakes treat my lip specifically and hope that he could reduce the AVM activity, thus restoring some of the normal blood flow to the area and hopefully healing would then be an option. I also began my search for a Hyperbaric Oxygen facility that would see me. And as much as I hated to do it, I talked with my boss and with HR about arranging a LOA from work.

I felt very guilty about just “ditching” my group out of the blue, but there was no way that I was strong enough physically or mentally to go back to work. I went to Denver in June, and again in July. Both treatments focused on my lip. And I started HBOT (hyperbaric ox) daily M-F. The bleeding episodes are way down and much less severe than they were. And the pain is much more manageable. Some days I’m not in pain at all. The wound on my lip is still ugly but I am finally convinced that it is healing…slowly. Unfortunately this last treatment in July created more tissue breakdown on the side of my mouth. So I now also have crazy, ugly wounds all scabbed up there too.

But I’m focusing on me and my health. I am not worrying about anything else and I think it makes all the difference. I can feel that I am healthier and better prepared to deal with the non-healing wound and the embolizations. I can feel that my body is ready to work and fight to get well. I wanted to be the perfect “sick” person. I wanted to prove that I was capable of doing everything. But I wasn’t. I’m not. And I know that it doesn’t make me less of a person, or a failure. In fact, I am more proud of myself now for admitting when I needed to take a break. For knowing that my health was more important than my Super Woman status. For finally deciding that “I” was important enough to be my sole focus for now.

So I’m feeling good. I’m not great, and I think I will have some more stumbles along this journey. But I’m looking down the road to when I defeat this stupid AVM. To the time when I won’t have to worry about this on a daily basis. A time when I won’t wake up in a panic when my hair accidentally tickles my face. A time when people won’t look at my wonderful husband like he must be abusing me! I’m excited to have there be an end to this. I know it is a long way down the road, but it’s there. And I’m holding onto it.