Major Surgery For Rare Facial Mass

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Hello! My name is Laura and I am a 28 year old mother of 2 young kids with an Aggressive vascular Malformation in my face called a AVM aka Arteriovenous Malformation. An AVM is basically a tangled collection of abnormal veins & arteries that don’t get proper oxygen or blood flow. It usually occurs in the brain or spine, but mine so happens to be my entire top lip and base of my nose. How does this effect me & my quality of life? Well, drastically and here is my story—

In Septemeber/October 2013 I started getting insane headaches and severe gum & mouth pain, so I did what anyone would do and went to the dentist who was NO help. Not long after dentist trip I developed a pulsating lump between bottom of my nose and top lip that HURT like hell, for almost a YEAR it continued to grow and everyone from urgent care to ER told me it must be a cyst. During all of this I had a veiny stain on my face right under my nose where the lump was and I assumed it was the psoriasis that I’ve had most of my life. I went to a ENT doctor to see if my headaches were stemming from my allergies. It was at that moment the ENT felt the lump and the STRONG heartbeat pulse the lump had and said “I think you have a AVM, which would explain the lump, the heartbeat, the pain and the vein patch on your face”. So, that is where my journey for answers really took off.

I went to see a dermatologist about the patch of veins on my face and that is where “out of curiosity” the Dr put a doppler ultrasound machine on my lip and you could hear my heartbeat LOUD and clear, from my FACE? At first I thought it was cool and weird and we even made jokes about my lip being “pregnant”, etc. I went to a few interventional radiologists who indeed confirm for me that I have an AVM and that is was extremely rare to find them in the face and not brain or spine. I was ecstatic thinking I had answers and now I just needed surgery to have it removed. No, I was very wrong.

I had a couple of doctors simply turn me away because of rarity and they weren’t comfortable treating a facial AVM, only brain. I was repeatedly told “You're so young”; “This is too rare”; “Removing it will be too risky”; “Surgery could leave you disfigured”; “You could bleed out from surgery”. I felt hopeless and scared. Well, fast forward with having this painful mass for a year to end of 2014, during a ENT appointment about my Allergies I vented my frustration to my awesome doctor. He referred me to a Head & Neck Surgeon who then referred me to a NeuroSurgeon. After meeting this Neurosurgeon I thought this was IT, I am going to be OKAY! I thought YAY a specialist. At this point it was beginning of 2015 and I was DESPERATE for relief, my lip was swollen and it constantly throbbed and hurt so bad it was almost unbearable. So, the Neurosurgeon offered to do a maintenance surgery to attempt to at least shrink it, so of course I agreed.

May 19th, 2015 I took the plunge and had a type of vascular surgery called Embolization. Even though I was extremely swollen and sore I thought the surgery to be a complete success, because my lip wasn’t huge anymore and after few weeks I looked normal! But, then not even a month later I started to feel the pain and pulsation in my lip again. By July, only 2 months later, I felt what I thought was pain that was going to kill me. It was absolutely unbearable. It felt like my veins and arteries in my face were being pulled out from within. So, my Neurosurgeon agreed that it was growing back and we could try again. Feeling defeated and desperate once again, I agreed. October 6th, 2015 I had the same surgery once again, and this time, it was a complete failure. Within 2-3 weeks I wound up being rushed to ER by ambulance for severe pain where I was diagnosed with Trigeminal Neuralgia, which is a chronic pain condition affectioning the trigeminal nerve in face. (from damage from surgery)

My Neurosurgeon and his resident prescribed me Anti-Seizure medicine to help ease the nerve pain and basically “the mini seizures” that were happening in my face. It was the worst few months of my life. My neurosurgeon then told me he would not be doing the surgery a 3rd time, because of how much skin died (necrosis), nerve damage and pain I was experiencing from the 2nd surgery in October. I felt so defeated and depressed, so he referred me to a Head & Neck surgeon in same building as him (his office is in major hospital). I saw her in December, 2015, and she said the words I was LONGING to hear, “I will help you remove it surgically”. The only catch was, I would be left with a severe cleft lip or possibly worse cosmetic deformity. Being a mom and also being desperate to make pain stop, I knew I couldn’t have this thing much longer. Her only request was to be given time to contemplate how she would pull this big of surgery off. So I agreed. Not even a couple days later she called me saying she presented my case to a TUMOR conference and asked if I would be willing to see a Oncologist who thought he may be able to treat it with Radiation. Out of fear I reluctantly agreed.

I saw the Oncologist who offered me 3 rounds of aggressive radiation instead of surgery, only catch was the statistics he gave me were terrifying, the risks way outweighed the benefits. Since it was a few days before christmas he gave me some time to think it over. Well, few weeks later in early January 2016 I declined his offer for radiation due to following: The oncologist never treated a facial AVM, there was NO data for him to compare my case to, he only gave me a MAX 10% success rate, and the radiation would destroy my teeth & jaw bone. But, the biggest risk was my age and the likeliness of me getting Radiation cancer when older was higher then the success rate of helping my AVM. He said it would be basically taking the chance of helping me NOW to almost definitely contracting cancer when I'm older.

Still desperate on 2/3/16 I went back to the Head & Neck surgeon and asked her if she had a plan. She told me she could NOT help me and that based on my December 2015 scans that its grown too much and too advanced for her to perform any surgery and that my Neurosurgeon agreed. She informed me that any surgery to remove this would leave me cosmetically, drastically disfigured and my quality of life would be much worse. She referred me to Facial AVM specialist out of state.

From FB support group “Facial AVM Support Group”, I found others like me, who became my saving grace and helped keep my sanity. I found a Specialist in Little Rock, Arkansas who had GREAT success with removing part or all of AVMs in face and reconstructing the face for little disfigurement as possible. Thrilled, I began the journey of reaching out to his hospital and staff, who told me to send all my information to him to see if he would possibly speak to me. Still feeling a little on edge, a Mom from support group actually spoke to the doctor for me and let him know my situation. Dr Suen in Arkansas told her that if I sent my scans & records he would call me to see if anything could be done. I was so happy, I got my scans on disk and all my records and I priority mailed it all to him from Arizona to Arkansas. Meanwhile I did my research and found out from other AVMers and from the hospital insurance department that the hospital Dr Suen works at WILL NOT accept out of state medicaid.

Feeling down I waited for Dr Suen call, and on 02/24/16 it happened. Dr Suen agreed based on my old scans he believes he can remove most of it, and depending on growth and date of surgery, he would hope to get all of it. He would have to resect parts of my face and then reconstruct it the best he can so cosmetically it's the least disfigurement possible. Ive searched high and low and have done much research, and this is closest I’ve come to answers and possibly a resolution and even better maybe even being AVM free!! The only battle I have now is trying to hold on desperately due to the pain it causes me , and the fact that I have NO insurance besides my AZ medicaid which Dr Suen can’t accept. So this gofund me was created for following reasons:::
1. To obtain private insurance through Cigna or a company that I can use the insurance USA wide (since I dont live in AR)
2. Travel Expenses to/from Arkansas (will be there weeks at a time)
3. Insurance deductibles/copays- (will range from hundreds to thousands)
4. Living expenses.

My only option now to get this ticking time bomb out of my face is surgical removal. This will involve cutting my face and mouth open and removing all the deformed veins and vessels. I will be left with a facial cosmetic deformity and a lot of facial scaring... if the surgey is success the goal is for me to be AVM free and I will no longer worry about leaving my children without a mother.