Diagnosis backstory

In April 2010, I took a vacation with my girlfriends. As we sipped on drinks before dinner we took pictures to commerate the beginning our our vacation. It was then that I first noticed my left eyelid was drooping a bit. At the time, I didn’t think much of it as we had been up since 4am, and chalked it up to being tired.

A month or so later, while having dinner with my mom, she pointed out that my eyelid looked droopy. She also has a somewhat droopy lid. Again, I didn’t put much thought into it. Thought it was perhaps a genetic trait I was inheriting.

The summer was spent preparing for my upcoming wedding in October and my mom was also diagnosed with colon cancer.

In August, after my bridal shower, I was looking at pictures and couldn’t help but notice how much my eyelid seemed to be drooping that day! This time I didn’t dismiss it soley as stress. All I could imagine were my wedding pictures with my droopy eyelid! (yes, I realize I was being vain…) I made an appointment with my optomotrist immediately. He diagnosed the droopy lid as allergies and gave me a prescription for eyedrops. A week later, after not seeing a difference with the drops, I made an appointment with an opthamologist.

The opthamologist took a lot of pictures and asked a lot of questions. He was pretty sure the droop was muscle related and could be fixed with surgery. However, his policy was to not operate on anyone getting married within 6 months. My wedding was 2 months away. Also, he wasn’t convinced that the droop was muscle related and wanted me to see a neuro-opthamologist to rule out any other possibilities.

The appointment with the neuro opthamologist was similar to the opthamologist the week before, but she suggessted I have an MRI to rule out any other issues.

The next week I went for an MRI (my first ever in my life) and went to work. Later that day I received a call from Dr. Myers who explained that my MRI revealed an AVM. He spent an hour on the phone with me explaining what an AVM was and we scheduled a meeting for the next afternoon. The neuro-opthamologist also called me to explain my results and to make sure I was okay that afternoon. I was confused, didn’t really understand what was happening or how serious the situation was but realized it had to be or both of these doctors wouldn’t have called me so quickly.

The next day I met with Dr. Myers who sat with me and explained what an AVM was and different ways of treating it. Dr, Myers showed me my MRI results and where the AVM was. He explained that I needed an angiogram to get a better look at the AVM. It was scheduled for the following week. I immediately went to pre-admission testing as I was already at the hospital.

My fiance had left for Florida that afternoon for his cousin’s birthday party so I took a train home to my parents’ house. I was scared and confused and didn’t want to stay in our apartment alone.

The angiogram went well. As the nurses told me before I went in, it wouldn’t hurt and it would be over quickly. I spent the next 7-8 hours lying in a room recovering with my fiance and parents who had come out for the procedure.

Dr. Solomon came to see us in my room before we left and went over the results of the angiogram. I had an AVM in my right frontal lobe, about 3-4 cm in size. He told us my options (1. do nothing 2. emboliztion and surgical removal), due to the size of the AVM he did not recommend radiosurgery as he thought it would cause too much exposure to radiation. He went over the risks of each option and also made it clear that there was no urgency for me to make a decision.

Since our wedding was 8 weeks away, we decided to go ahead with all that was planned and I would make my decision afterwards.

Of course, it was also recommended that I not fly long distances or travel to remote places just in case I had a seizure and would not be able to get the necessary help I needed fast enough. Our planned honeymoon to Tahiti had to be cancelled :frowning: - for now anyway…

Hi Liz,
I read you had Crainiotomy, Embolization and are AVM free. Mines about the same size and same location. I had GK in Sep 2010 and awaiting my 12 mo follow up. My doctors said they had successfully treated 11 patients with GK that have larger AVM’s than mine at the time. Have you had any seizures or any symptoms since your procedures ? How you doing these days?

Hi Brett,
Yes, I had three embolizations leading up to my crainiotomy in February of this year. I’ve never had a seizure and my recovery has gone very smoothly. I have some emotional side effects (I think from medication) but they aren’t too bad. Thanks for reading and if you have any other questions, I would be happy to help any way I can.