How did you first discover the Joe Niekro Foundation?

I googled it upon moving to Arizona, it was first in search engine under AVM support groups in Phoenix.

What do you do as a volunteer for the foundation?

I facilitate the Phoenix support group and also help in any other way that’s needed or asked that I’m able to.

What do you enjoy most about volunteering for JNF?

Mostly I enjoy being able to assist survivors and caregivers in their journey. As a facilitator I get to point them in right direction to gain needed services based on guest speakers I have seen come to group. Also I get to personally chat with new ones learn of their journey and relate to them and when they hear me say me too their faces light up same way mine did when I first came to group and there is nothing equal to that feeling of knowing you helped someone at least once on their journey.

How has the Joe Niekro Foundation aided you in your journey?

The foundation has given me the best opportunity to move forward in my journey in the best way possible. I’ve been able to emotionally start healing by putting in to perspective my journey. The foundation gave me a safe place to finally start to process all that I had been through and would further go through in my journey. This in turn gave me a peace to finally start to heal emotionally and for that I am forever grateful!

What do you enjoy doing in your free time outside of volunteering?

I enjoy crocheting a lot. I also volunteer with the deaf and hard of hearing community teaching them about the bible using American Sign Language. In addition I enjoy coloring in adult coloring books. Its also very therapeutic in my recovery I have found good for me.

Can you please share with us your story?

When I was eight months old, I had my first seizure. I spent the first five years of my life having multiple seizures with no explanation as to why. After five seemingly, these seizures stopped. However, at 13, I started having symptoms of seizures so we did testing but no seizure activity was found at that time. I was having daily headaches but told this was because of stress.

Fast-forward a few years to when I was 23 in 2010 and I had been still having daily headaches that had been increasing in intensity. I had no insurance though. I ended up with a severe headache attack in November of 2010 that landed me in the ER. It was truly the worst headache I had ever had at that time. A CT scan showed “my blood vessels were dilated and enlarged,” but they never found the cause so they gave me steroids, nausea med, and pain medicine and sent me home. 2 nights later I returned with an even worse headache than before. They found that my blood vessels were same as before with no effect from previous medications and that I needed more testing, so they did a spinal tap that was negative for a brain bleed they said but they did find that it was a “traumatic tap”. This meant there was a tiny bit of blood in the removal of the needle but not enough to be a bleed. However, later they found that I have had microbleeds over time from my lesion.

Fast-forward to January 2011 when I was finally able to get in and see my initial life-saver, Dr. Alfred Callahan III. He listened to all my symptoms and said that I reminded him of a patient of his that had pituitary problems so he wanted a scan done immediately. I saw him on a Tuesday, and the detailed MRI, MRA was done on the following day, Wednesday.

Dr. Callahan volunteers at the hospital I was going to one day a week every month and I just happened to get him that day. He came in to fill in for the other Neurologist I was scheduled to see originally. On Saturday of the same week, I received a letter in the mail from Dr. Callahan telling me he found a vascular malformation in my brain that required I see a neurosurgeon immediately and that he had scheduled an appointment for me to see on Monday of the upcoming week.

I was shocked and devastated. I didn’t think they would find anything. For years, I had been tested and they always said my scans were normal and then now they say they found something. Immediately, I started researching vascular malformations and the only information I found, said that vascular malformations rupture and kill you. I was scared to death. Monday took forever to come. Yet, I dreaded Monday coming.

Monday, I saw the neurosurgeon who then told me I had an AVM and that I needed surgery to get rid of it. He said, however, that because of its location it would be a hard procedure so he wanted more imaging beforehand. He ordered an cerebral angiogram which was done March 2011. He was going to do an embolization at the same time but was unable to do so because the AVM was too complicated.

The angiogram showed that I had an AVM close to my optic chiasm and that surgery in that area would be too complicated. So he then recommended I have Gamma Knife and referred me to a Neuroradiation Oncologist. This was Samantha who evaluated me and found I was not a candidate for this procedure. I could not have that much radiation placed that close to my eye nerves.

In the meantime, I had been having a lot more headache attacks that were worsening in severity and also I had begun having daily seizures. These seizures were going untreated for a number of months while I was trying to find a decent neurologist. Having no insurance really really really  sucks.

So I finally found a neurologist who got me on meds that helped some. Then, I the worst headache I had ever had and it landed me in the ER again. The docs did a spinal tap again to check for bleeding and my life changed in an instant.

I was told to rest after the procedure and woke up to not being able to move my legs properly. I could feel them but couldn’t lift them or walk. I spent the next week in the hospital with doctors trying to figure out what happened and they never did. They sent me home in a wheelchair they didn’t even provide for me. I spent the next month in therapy learning to walk again and strengthening those muscles. It was so frustrating and painful during that time.

After the oncologist said I wasn’t a candidate for radiation treatment I was referred back to the neurosurgeon who was unwilling to do the surgery with my personal requests of no blood products. So I decided to not do the surgery with him. I started the search for other surgeons.

My neurologist and Dr. Robert Spetzler of the renowned Barrow Neurological Institute were best friends in medical school and he recommended I have no one but him do the surgery. So he sent my records to Dr. Spetzler. Dr. Spetzler received my records on a Monday reviewed them and on Wednesday they were calling to schedule surgery.

Only problem was I had no way to get to Arizona to have the surgery. I knew no one in the state and had no way to establish residency to get the surgery done. Thanks to Jehovah God, I was finally able to get my surgery done as Dr. Spetzler communicated with my surgeon Dr. Robert Singer in Nashville to get my surgery done on November 11th, 2011. What I didn’t know was the recovery I would have ahead of me.

After surgery, I suffered a major grandma seizure in recovery room and was unconscious for four days. Two days after surgery I had 4 seizures in a 24 hour period. During this four-day period, I had extremely low brain activity with no explanation as to why and was riddled with seizures which defied the low brain activity. I was a medical mystery. To top it off I still had 60% of my AVM left.

I woke up four days later and had a sinus infection and a busted ear drum from the feeding tube and soap used to clean the surgery site before surgery. I was a mess. I was having daily seizures despite seizure medicine, I was in therapy 3 times a week, and I was suffering an allergic reaction to my seizure medicine that was causing psychosis and we didn’t realize for almost a month.. We thought my symptoms were a result of the surgery itself I was a wreck for a few months.

Eventually I had to have my AVM removed completely because it had created and formed two aneurysms as well. The first aneurysm was found in 2014 and the second one in surgery this year. I finally had my second craniotomy to remove the AVM entirely by Dr. Robert Spetzler right before he retired on April 14, 2017. This second surgery was a success in removing the rest of the AVM I had. However, despite all attempts, the doctors were unable to remove the aneurysms. One was treated with Gortex wrapping and the other was left alone to be observed and treated with new technology as it becomes available.

Despite my ordeal, I was able to complete and graduate from college with my Associates Degree with honors in May 2017, exactly 4 weeks after my second craniotomy.  I am thankful I am still here to be an aunt to my niece and nephews, a sister to my brothers, and a daughter to my parents.