Answers and Someone Who Cares

 After going to the first recommended neurosurgeon, I was determined to find someone who could help. With the help of those who have trekked through Neuro and some well guided friends, I called Ian Dunn out of OKC.  I got got a referral to speak with him, hoping if nothing else, that he would be able to refer me out of state or to someone who specialized in the Pineal region of the brain.  

I received a phone call a week before the appointment only to find that Dr. Dunn would not be able for the appointment but I had options to come get established or wait till he returned toward the middle or end of September. 

I grabbed the opportunity to state my case to the person on the phone with me and share how I was looking for a referral on someone who specialized in the pineal region and understanding cysts and pinealocytomas.  To my wonder and surprise the nurse on the phone was the hands on support for Dr. Dunn and encouraged me to keep my appointment and come have a conversation with her.  At the very least, she would ensure I had the current MRI with contrast.  However, her phone side manners was amazing and her insight on other patients who had came in to see Dr. Dunn was refreshing.  She also directed me to a some research on the Pineal by Dr. Dunn to keep me in the loop.  24/25 patients who had had surgery to remove the cyst/tumor had no more headaches almost immediately! It was too good to be true. 

Mom made the trip with me to OKC OUH for the appointment.  Nervous and excited were my emotions, were I think mom was just nervous.  Everything she had head from this point had been from me or Bobby and I would only imagine she was hoping we had made it more dramatic, than the reality. However, she was brave and my stronghold, just as Bobby had been. 

The appointment was pretty straightforward.  If I ever wanted relief, surgery was the only viable option.  She reviewed the herniated discs in my neck too, but believed most if not all my symptoms were from the mass in the brain. 

Before I left the appointment, my surgery was scheduled. Thursday, November 16th, 2023 would be my date. I also received instructions for follow-up specific MRI's and a pre-surgery visit to review scans and talk through the surgery with Dr. Dunn. It was all too smooth- nothing to this point had been smooth. 

25+ years of non-retracting, ongoing, debilitating migraines, then slowly adding in various symptoms of motion sickness, nausea, degenerating eye sight, memory loss, weight issues, stomach issues, greying hair, hormonal issues, and a stabbing pain in top of head that rarely left me alone combined with some crazy sleep patterns. 

It all feels crazy. 

We finally told the boys as enough of our close friends and family had been asking for updated and without the knowledge to do so privately. When we told them, we kept it simple.  The doctors found the reason mommy has headaches, they are going to do surgery to take that part out.  It will be in November. 

They looked relived, not scared. That part almost broke me. They were so excited to have a "normal" mommy who is not in pain that surgery was a relief.  Maybe it is for me too.