Learning a true sense of “balance”

I am a recent member of the ANA and just read over all the newsletters from last year. It is amazing that all of our stories are so different. How can one entity, called the acoustic neuroma, take on so many expressions? I have read accounts of healing in just a few weeks, I have also read about patients who have not recovered after years of therapies. Our human experience is such a mystery.

Today, I am called to share with you my unusual story. It is rich and multi-faceted. I hope to inspire those that have suffered to find their inner strength and communicate that it is okay to be real with your feelings. I also hope to prompt those that feel inclined to seek education on issues affecting our society wellness. This includes our failing state and county health systems and also the health dangers of our technological age and how you can help protect yourself.

I start the story by saying that I had numerous symptoms for about 10 years. The most noticeable and threatening include whole body right sided instability and numbness, digestive problems, low immune system, severe lack of balance, hormonal imbalances, mental fatigue and memory loss, moodiness and eventually hearing loss. I have seen more doctors than states in this country and have also traveled this country searching for answers. Both Eastern and western doctors remained unsure and sometimes uninterested in solving my health crisis. I believe that because I am a beautiful, knowledgeable and healthy female (I am a professional model) they thought I was a hypo-condriac.

Real, or not, everyday was a challenge. I intuitively felt like I was being pursued by something. I felt sure that it stemmed from my brain and even convinced a neurologist back in 1999 to do a brain MRI. He did the MRI without contrast and found nothing. I underwent about 20 combined x-rays, MRI’s, endoscopies and other tests. I eventually had to file bankruptcy from all of my medical debt. I was also denied health insurance since 1999 due to all of the mis-diagnoses. I was only 24 years old.

I took matters into my own hands and became an empowered and self educated woman. My diet was impeccable and my life filled with positive things. I did daily Pilates, yoga and weight-lifting and strenuous hikes. I even became a Neuro-linguistic Practitioner and a Hypnotherapist to assist myself and others in healing. I, in fact, did rehabilitate myself to a point that I was functioning very well on a daily basis. Everyday presented challenges but I just learned to deal with it and compensate. My body reached the end of that road in July, 2004.





I managed to injure my foot doing a very minor movement. In that instant, I strangely and clearly KNEW that my foot was being a messenger for something else. I felt it was imperative that I found out once and for all what was going on deep inside of me. Over the course of a month, I saw five doctors and I knew I was getting misdiagnosed and I would not accept it this time. I had a heart to heart conversation with my chiropractor. We both felt simultaneously felt I was having a neurological crisis. The next day I had an MRI and was diagnosed with a life-threatening 4.3 AN that was compressing my brainstem. The tumor had been missed with the last MRI, but could have been there for at least 10 years. I had to get surgery immediately.

I was “faced’ with many fears and obstacles so quickly that I almost passed out with all of this news. I had no insurance and the surgery was $100,000 down!! Radio surgery was not an option based on how distorted my brainstem was and the size of the tumor. There was a chance of paralysis especially since the tumor was so large. I did not even want to have the surgery done because I practiced holistic medicine. The fact still remained that I had a huge tumor and after much mediation and guidance, it became clear to me that surgery was the only next step.

I had to file for emergency Medi Cal. There was no way of paying for the enormous surgery. This process was regulated to take a few days due to the life threatening and disabling nature of my situation. My doctors included notes stating this case of emergency. I was spiraling down fast. My face was going numb, I had severe headaches and was unable to touch my skull where the tumor was because of pain, and had even been unable to walk. Early October, I temporarily lost my vision and started vomiting uncontrollably. I went to the hospital and was told I needed surgery right away.

The problem was that the Medi Cal representative had not returned any of my calls and there was no forward movement. I prayed for miracles. At first I got something else: the sudden event of my original (and very prominent) surgeon dropping my surgery three days prior to it. He tried to pass me over to someone I had never heard of, nor met!! Then, compassionate and helpful Dr. Freidman and Hitzelberger came to my aid and took over the case. My community fundraised in a matter of days and my parents took loans to raise the needed monies. We were told that Medi cal was responsible for reimbursement back to the date of application and that we would be paid back for everything.

I proceeded with the surgery at St. Vincent’s on October 11, 2005. The day before I made a point to smile more than I ever had (which was a lot because I am a happy person!) I went into the procedure in complete prayer and knew I was in God’s hands. I talked to the team and requested for partial tumor removal if it meant paralysis. This had been such a strange journey and I surrendered myself completely and held very positive visualizations. The woman who shaved my head braided the still long side for me as a “special gesture”. That was the last thing I remember …





Until I woke up being wheeled down a corridor with my trying to be calm boyfriend telling me that I would be okay in time. What did this mean?? I was so out of it, but I felt aware of my face so I assumed that I would be conscious in a few days and I would be fine. Every time I woke up I vomited. I yelled at everyone because I had no idea what was going on. I refused all pain medications (even though I felt like I was run over by a car) so that I could have the best chance of returning to my normal state without chemicals. After a few days I went to my regular room and that is when I started getting the news…

My tumor was one of the most aggressive that my surgeons had EVER seen. Unfortunately, my facial nerve was wrapped in the tumor and had to be sutured back together. I would have paralysis for at the least 9-12 months. I would hopefully recover, but would never have the same smile. AKA, I would not be modeling. AKA, I would not be able to express my happiness through smiling. AKA, I would not be able to participate in outdoor activities that I had thrived on because I could not close my eye! I did have the option of an eye spring but made the difficult agreement with myself that I would wait a year and give my body the best chance at making its own recovery.

I could not see straight for a good month. When you have an eye that does not close, everything is different. It is really uncomfortable to be in the sun and even slight wind, and then there is the shower! But I have learned so many tricks at making myself look and feel almost normal. I was now going through a foreign, intense and ugly experience with myself and the world. Ironically, at the very same time, I was the featured model on a very popular web portfolio. My site had received over 1, 400, 00 views. I was being offered job after job. I had worked YEARS for that opportunity and it came at the time when I could not blink, nor smile. Did I mention earlier the mystery of life??

If that was not shock enough, I was reared ended by a drunk driver one month after the surgery. I was not driving yet, but I was in my car. I was assaulted by the woman who caused the accident. I even had my eye patch on and she still cursed and swung at me inside my car! Remember the post-op instructions of “avoid all stress for at least one month”? I did not have that luxury… .

I did not have that luxury at all. As my story is an intense one, I regret to say that I was also homeless after the surgery. Yes, you are reading correctly, homeless. Three weeks after the surgery I received a letter of deferment from Medi Cal. They postponed making a decision on my case (only after they had the total from my surgery bill...). My family and I had been counting on being paid back and we had no money for housing. I had to stay at various rentals and at friends’ homes. I have no family here and no spouse. I even had to have money donated to me so that I could get my follow-up MRI done.





This is not a sad saga. Life is so cyclical and I know this so I have believed and prayed. Miracles are alive and happen. The most important being that the tumor is gone!! And, thanks to the generosity of self help guru Robert Allen’s family and fundraising efforts, I have recently been able to afford an apartment! I have been able to see Wanda Crook, one of the most amazing and experienced vestibular therapists and I have a great loving community. I am also planning on visiting Jackie Deils, facial therapist, after I have fundraised additional monies so that I can smile again!! These are all very good things!

Seven months post-op I feel my spirit coming back more and more each day. I am aware that a part of me left with this surgery. I remember seeing my spirit over my body during the surgery and the trauma that went along with it. An interesting side effect of this tumor was an increased awareness, sensitivity and psychic ness. This is a portion of my identity and when I experienced all of the pain of this process my spirit was afraid to come back. I communicate this because I think that there may be a lot of AN people out there that have this experience. I think it is the strength of sprit that is allowing me to still stay positive after the intense events of the past 8 months.

I am going to need this because now I am filing suit against the state for gross negligence in my Medi Cal case. It has been 7 months since my application and though it is admitted that my paperwork was filed incorrectly by the state and county, no one has accepted responsibility and closed my case with approval. I have met every requirement by law and am taking my story public to expose the unethical and illegal treatment brewing inside of our county and state systems. I am going to see justice prevail!

There is so much more to tell and yet, I know I must end here. I will have updates on my website at www.reneeairya.org. Please feel free to email me there and set up a healing and/or information appointment. We go through this to help others. I am also seriously advising the public, especially those of us whom have had the AN, to educate themselves on EMF exposure and cell phones. There are many double-blind studies that are proving the contribution of cell phones in relation to brain tumors and cancers. I believe that very excessive cell phone use contributed to the aggressiveness of my tumor. To combat this phenomenon, I am now promoting technology that is affordable and harmonizes EMF on phones and other appliances by 90%. This information is found at www.mybiopro.com/renee.

Blessings and enjoy the mystery!