Phil's Story

As we release the next film teaser for More Than Skin Deep on the homepage, we also continue our series highlighting the journeys of AVM patients here on the blog. I'm learning that producing a documentary takes not only a great idea and a captive potential audience but a strong team and God's grace. Thankfully, I am a survivor and have learned perserverance. I hope you are encouraged by reading Phil's story!

1) Describe the type of AVM you have? What was the first sign?

I had a brain AVM in my right Temporal Lobe, the first indication of it was when I suffered a stroke whilst training in the gym. I had no idea what an AVM was and had absolutely no idea I had one myself.

2) How did you eventually come to receive treatment?

Upon presentation with my brain hemorrhage/stroke and paralysis, I was diagnosed and had subsequent brain surgery 3 days later.

3) Who are/were your main doctors, where were you treated and how was the care?

I was treated at Frenchay Hospital by a neurosugeon called Mr. Porter, very well qualified in his field. My treatment was fantastic and the nursing team very caring and understanding.

4) How is your health now?

My physical recovery was very challenging. I had to learn to walk again and use my left arm/hand, yet I set myself a goal to get back into shape and compete at a physique competition, which I achieved. My mental state was a much more difficult and lengthy process which I still have issues with today. I also suffered a Grand mal seizure in Dec 2011, 17 months after I was discharged from hospital.

5) How has having an AVM changed your life?

You appreciate and acknowledge life and your existence much more. I don't take anything for granted and really truly believe in maintaining your health and fitness because you never know what's round the corner. If it was not for my own dedication to my health and fitness, I would not be writing this.

6) What has been your biggest challenge in the battle with AVM?

It has left me with depression and the mental scarring. Presenting itself in such a way, I should have lost my life due to the amount of blood in my brain. The stroke left a harrowing scar on my and my families life, it changed my personality and left me very frustrated and angry.

7) What do you think a documentary about those surviving AVM canachieve?

That with the right treatment, you can live life to the full, that nothing should hold you back. An understanding of what an AVM is to the general public, that it is this rare illness and it has such devastating consequences.

8.) What are your hopes for the future of AVM research?

Continuing improvements and treatments including prescribed medicines

9) What has been the biggest lesson you've learned throughout your journey thus far?

Don't EVER, EVER give up!

Michael's Story

Hey Everyone! Here is the next Q &A in our series highlighting survivors of AVM. As far as More Than Skin Deep, we are in the process of securing a team of coproducers/partners and a crew for the feature length film, and we are in post production on the first short film. Stay tuned!

Blessings,

Jaz

Be encouraged by ...

1) Describe the type of AVM you have? What was the first sign?

I have a facial AVM in my right upper right lip. I also survived an arteriovenous malformation in the left intraventricular area near the posterior temporal region, which was diagnosed in 2006. The first sign of my AVM when I was 10 years of age. The doctor thought it was a small birthmark on the lip, and later the birthmark got a little larger at the age of puberty.

 2) How did you eventually come to receive treatment?

I waited until I was at the later age of 24. After finishing college and working on

a steady full time job for a little over 4 years. I later went to a doctor who told me

nothing. So, I started jumping from doctor to doctor and started to do research

on my small birthmark in the face and lip. I later found out that it was an AVM.

I receive eight Endovascular therapy with the last one in December of 2008...

until Doctor Yakes found a small AVM in the brain as well. I started status post

stereotactic radio surgery in January of 2009.

3) Who are/were your main doctors, where were you treated and how was the care? My main doctor for the facial AVM is Dr. Wayne Yakes who treated me at the Swedish Medical Center in Englewood, CO. My main doctor for the brain AVM is Dr. Nelson Oyesiku in Department of Neurosurgery at Emory Clint in Atlanta, GA. Over all the care was good.

4) How is your health now?

I’m in good health as far as taking it easy after having a golf size hemorrhage. I’m now taking medications call levetiracetam

which have some side effects. I also experience a little more swelling in the lip

because of the lack of treatment now. I’m still battle the AVM in my lip which was put on hold do to my brain hemorrhage.

 5) How has having an AVM changed your life?

I’m now closer with God, my family and my friends. It also gave me a bigger purpose in life to make life about

helping other rather than myself.  

6) What has been your biggest challenge in the battle with AVM?

Waiting! Now it is more about organizing my life to connect with other, to explain my anomalies to other as well explain to them about my short-term memory lost and depression at time.

7) What do you think a documentary about those surviving AVM can achieve?

AVM is somewhat difficult to diagnosis. But if everyone highlights their battle with

AVM and how their life change and the mistake doctor made, you made

will bring awareness to many people who suffer from AVM.

8 ) What are your hopes for the future of AVM research?

A cure that will allow all doctors to find the bad blood vessels (AVM) in the mother's womb before birth.

Moreover, one that after birth will keep the child from battle this challenging and sometimes deadly

condition.

9) What has been the biggest lesson you've learned throughout your journey thus far?

Make sure that you love yourself first. If you’re still young start finding out what

make you happy and hold on to it tightly. I say this because it’s a long journey not

only getting treatment for AVM but become a better person. Your peers will judge

you, but the only one who can love you is you. The doctors are only working with

the skill God gave them. Doctors give medicine to heal the body and to correct

your look. But only you can heal your inner body.

Erin's Story

The great thing about moving to a new place (L.A. for me) is realizing that although vibes and cultures may vary, we all really have a lot in common. We have good days and bad, obstacles and triumphs. We work hard, we love hard and we push forward. We live! No matter what's going on in your life, as you continue to read this series, I hope that you are inspired to see, if others can make it through, so can you! Here is Erin's story.

1) Describe the type of AVM you have? What was the first sign?

I have an AVM in the right occipital lobe of my brain that is 5-6 cm in size,which is about the size of a medium sized tomato. The first signs of my AVM were headaches. These headaches weren’t like any other headache I have ever had before. That is how I knew something wasn’t right, and I needed to see the doctor. 

2)How did you eventually come to receive treatment?

I went in to the hospital for an MRI at 4:30 on a Thursday afternoon. By 8:00 Friday morning, my doctor was calling to tell me they found an AVM in my brain, and I had an appointment with a neurosurgeon Monday morning. At that appointment the surgeon looked at me and told me he didn’t know enough about AVM’s and that he wasn’t going to touch me. The next day, Tuesday, I had anappointment with an eye doctor to see how much of my vision had been affected.Then, that next day, I had my first appointment with my endovascular neurosurgeon, Dr. Siddiqui, who has now preformed 4 angiograms and embolization with the 5th on March 21st 2011. After he feels the entire AVM has been embolized, I will be going in forgamma knife radiation.

3)Who are/were your main doctors, where were you treated and how was the care?

My primary doctor who sent me for the MRI and discovered the AVM is Dr. Rajiv CParikh MD, from Dunkirk, NY. My endovascular neurosurgeon is Adnan H. Siddiqui,MD, PhD through University at Buffalo Neurosurgery, UBNS. I have received my surgeries at Millard Fillmore Gates Hospital. The care I have received fromall three offices is outstanding. They really make you feel like a person with feelings not just another patient.

4) How is your health now?

 I am still in the process of treatments to obliterate my AVM.

5) How has having an AVM changed yourlife?

Learning of my AVM at the age of 19, I learned to enjoy what you have in life while you have it. My AVM also changed my life in the sense that I am not able to do many of the things I enjoyed before they found my AVM.

6) What has been your biggest challengein the battle with AVM?

My biggest challenge in my life with an AVM is continuing with my education and getting people to understand why I can’t do some of the things I used to do.

7) What do you think a documentary about those surviving AVM can achieve?

A documentary about AVM survivors could spread knowledge about the disease and inspire other AVM survivors to not give up hope.

8 ) What are your hopes for the future ofAVM research?

I hope that we can find a cure for AVMs and a way the find an earlier diagnosis.

9) What has been the biggest lesson you've learned throughout your journey thus far?

I have learned a lot about myself and many of the people that were a part of my life. I am a much stronger person physically, emotionally, and mentally than I ever thought. I have also learned what friends and family members truly care about me and which ones only act like they care.

Alan's Story

This week has been crazy busy with lining up shoots and meeting some amazing survivors. Can't wait to share more...

So check back! For now, I am honored to present the second Q&A in our series...

1) Describe the type of AVM you have? What was the first sign?

My AVM was a cerebral hemorrhage that burst in June of 1993. I experienced symptoms for about a week after a rigorous Boy Scout hike. There was no way of telling that the symptoms were ever related back then. I experienced nausea, which led to vomiting, and an average cold that lasted for a whole week. I would be sent home from school because they just thought I was sick. The pediatrician was pretty confused about my symptoms and just thought that I was allergic to something. He would tell me to use apple butter instead of peanut butter because he thought that was the problem.

2) How did you eventually come to receive treatment?

Ironically, at a Boy Scout meeting I started getting a pounding headache and asked to go outside to see if a little fresh air would help. After about two minutes I lost my voice and luckily before I passed out my mom had arrived from her walk. Fortunately, my dad’s ex-girlfriend had a son in the same Boy Scout troop and she helped my mother rush me to Urgent Care. Once we arrived to Urgent Care they called an ambulance in to transfer me to the hospital because it was something more serious than they could treat at Urgent Care.

3) Who are/were your main doctors, where were you treated and how was the care?

My main AVM surgeon was Dr. Tong. Another Main doctor was Dr. Peterson. I was treated at Children’s Hospital in Kearny Mesa. The care I received was pretty good. My mother told me that they wanted to eventually discharge me to a hospital to Encinitas, but my mom fought it because she didn’t want me to be too far from her house. They had a family meeting with the doctors and my family, and they wanted to pull the plug because they didn’t think I was going to come out of my coma. My mom asked them if it was their son if they would pull the plug, and Dr. Peterson understood where she was coming from so they came to a compromise to move me to the convalescent hospital.

4) How is your health now?

My health now is very well. I have not had any more symptoms of an AVM. Dr. Tong decided to stop seeing me afterwards because there was no trace of any further complications. Just coming out of the hospital I was completely G-tube fed, and they told me I would never be able to eat orally. I am a fighter and wanted to eat again and have been eating orally since 1995. Luckily I had a very good speech therapist to make this happen. My next goal has been to be able to walk on my own. I work hard every day using a walker to help achieve this goal. I am pretty independent with all of my daily activities except for cooking meals.

5) How has having an AVM changed your life?

Having an AVM has truly opened my eyes to what I was blind from for many years. It has made me look at the disabled community at a different angle. I am more empathetic with every case because I understand the challenge they have to face every day. Having an athletic background has helped motivate me to do my best in everything I try to do. I also do no give up as easily.

6) What has been your biggest challenge in the battle with AVM?

My biggest challenge has been getting acceptance from the society. I have been fortunate to be around lots of people who understand the needs I require and are willing to help. Getting through school and not being able to use my hands to do my own writing was also a big challenge, along with being a slow reader and having to have assistance.

7) What do you think a documentary about those surviving AVM can achieve?

I believe a documentary about surviving AVM would open up the eyes of our society. There are people who have internal disabilities, and most of society thinks that they are slow or dumb. This is not true and a documentary would show them that we are average people, if not above average, and are capable of doing more then they think we can do.

8 ) What are your hopes for the future of AVM research?

My hopes for the future research is that they have success in finding a way through DNA mapping to alter genes to not replicate the AVM.

9) What has been the biggest lesson you've learned throughout your journey thus far?

The biggest lesson I have learned thus far is to look on the positive side of things and always strive to come out successful no matter what anyone tells you. 

Michele's Story

Hey Everyone! As you know, the whole point of More Than Skin Deep is to give AVM survivors a chance to tell our own stories.So...I am so honored to be present the first in a series of Q&A's with AVM surivivors! Check back for more to come!!!

1) Describe the type of AVM you have? What was the first sign?

I have a brain AVM in the right temporal lobe which I didn't even know I had until one year ago February 10, 2011. I had no idea what an AVM was until my fateful night. The one and only sign I got was when my AVM ruptured, without any kind of warning.

2) How did you eventually come to receive treatment?

February 10, 2011 was like any other normal day for me at 46 years young. However, little did I realize that this would be a day that would change my life forever. I went about my normal routine of work and the gym. After leaving the gym, I came home and was going about my normal routine at home and all of a sudden... WHAM. I felt a pain in my head and knew that something was seriously wrong. I called my sister and then 911. When I got to the local hospital, all I remember was I was continuously saying "PLEASE HELP ME"! The doctors did a CT scan, and it became evident that I was in the midst of a massive brain hemorrhage and was med-flighted to Boston Medical Center. I woke about about three days later not knowing where I was or what had just happened. It was then that I started learning about AVMs.

3) Who are/were your main doctors, where were you treated and how was the care?

I was initially treated by Dr. Alex Norbash at Boston Medical Center who saved my life and performed an emergency embolization to stop the bleeding which ultimately saved my life. I spent the rest of February at Boston Medical Center and the care was exceptional during my stay. I was scheduled for brain surgery on Feb 23rd, however, as part of the pre-op process, the angiogram showed that the embolization that was done on an emergency basis treated 85% of the AVM. The surgery was cancelled as there was only a very small residual pieces of the AVM remaining. I was discharged from the hospital on March 1st after surviving a massive brain hemorrhage as a result of my AVM rupture with not one deficit other than intense fear. Now, I consider myself truly blessed! I went through CyberKnife treatment back in June of 2011 to remove the residual pieces of my AVM. After learning that my neurosurgeon left Boston Medical Center, I was so very lucky to find Dr. Christoper Ogilvy at Massachusetts General Hosptial and am now under his care until my AVM is obliterated.

4) How is your health now?

While I am still waiting for my AVM-FREE report, my health is just as it was prior to learning of my AVM back in Feb, 2011 (which is very good!).

5) How has having an AVM changed your life?

Having been thru this near-death experience, I am truly grateful for ALL that life has to offer! While this AVM was a terrifying experience, this has also brought so many blessings into my life which would not have surfaced if it was not for this AVM experience.

6) What has been your biggest challenge in the battle with AVM?

Dealing with the initial fear and anxiety has been the biggest challenge in my battle with my AVM. However, I know that I am in the BEST hands possible!

7) What do you think a documentary about those surviving AVM can achieve?

It will raise awareness and help our medical professionals receive the funding they require to continue to advance early detection and treatment of AVMs. In addition, this will also raise awareness for the families of a loved-one who have to battle through the effects of an AVM.

8 ) What are your hopes for the future of AVM research?

Early detection and continued advancements in treating AVMs which will accelerate the treatment process to become AVM-FREE.

9) What has been the biggest lesson you've learned throughout your journey thus far?

Never take life for granted and live lovingly and happily. Another lesson is that my priorities have certainly changed so much. I no longer strive to make more money, have a bigger house, better car, etc. Life is about creating and sharing memories with loved-ones and helping others when needed.

I Didn't Know My Own Strength

So, this week has been an amazing example of how God will allow people into your life and use you and them to inspire others.

This morning I was blessed to be on radio station WDIA's The Bev Johnson Show in Memphis, TN. Bev and I were able to use her radio platform and my story to motivate listeners to go for their dreams despite any obstacle and use every challenge as an opportunity from God to be a blessing in someone else's life. And that's not it.

I also have my first guest blog post! I am featured on the blog Georgia Mae discussing my journey to handling AVM and finding strength.

Here is the beginning of the post...

Sure enough, over the next few days, weeks and months, news media and water cooler talk will all surround the death of one of the greatest voices of all time, Whitney Houston. But, I hope we can all soon turn to recount the number of songs she had throughout her career that touched our souls and empowered us in some way.

One song for me was “I Didn’t Know My Own Strength” from Whitney’s final album, I Look to You. In the song, she sings about the challenges she has faced, the doubts she initially had and how she was able to eventually realize the power she had within.  The chorus of the song is my favorite part. It makes me think deeply about my own journey of overcoming physical illness and insecurity to reach the place of God-given peace that I am in today. 

Survived my darkest hour

My faith kept me alive

Starting at age 10, I have had over thirty surgeries for a rare vascular anomaly called Arteriovenous Malformation or AVM. The physical toll of these tangled growths of arteries and veins has included removal of sections of my face, battles with bleeding, and challenges speaking and eating. But, there were times when the emotional challenges -- enduring procedure after procedure, spending 10th through 12th grade in and out of the hospital and realizing that I would never have a “normal” face-- would almost send me down a despairing spiral of depression...

Visit Georgia Mae to read more. 

Fiercely Unpretty

The Indie GoGo campaign has officially started. So excited!

I have been looking through a book by my friend Leah Oviedo called I Am More Than Just A Girl which offers encouragement to young women about the power of words to uplift ourselves and others. Leah says, "Start your day off with a positive affirmation and putpositive, encouraging, complimentarywords in your mind. When you say yourpositive affirmation enough and take actions tomake your life better, your lifeand confidence will improve." So, here is my affirmation poem for the day ...

Fiercely Unpretty

It doesn't matter what you think of me.

Doesn't matter if your eyes linger alittle to long when you look at me.

Doesn't matter if your turned off or taken a back by my appearance.

I am a force to be reckoned with

I cannot be moved

I will not be stopped

So don't let my exterior fool you

I'm fierce

*snap*

 fly    

                                                       *snap*                                                          

and fabulous

*snap, snap, snap*

The Eve

So, this is the night before the big launch for our online fundraising effort. I'm a little nervous because this is my first time every taking on a project like this. I really do not know what to expect! But, I know what's truly important. Not the accumulation of money or praise or things but God. I have been blessed with opportunties to inspire people and show people the Grace that God has shown me. I am ready to keep working as hard as I can! Let's go!

"Whatever you do, work at it with all your heart, as working for the Lord." ~ Col. 3:23

All Eyes

Today begins a shift. Not a complete 180. About 50, a 90. We are in the process of change. No longer will we hide behind futile attempts to blend in to a crowd that is not worth the effort or refuse to meet gazes as if it gives us some cloak of invisibility. We will be heroes and heroines, superwomen and supermen. We will stand and we will speak. And we will move mountains and people.