Three Of Us

Last Thursday, we took Alex to his appointment with the Chiari specialist in Orlando. This doctor is also a neurosurgeon. After the eight hours of MRIs, where Alex refused sedation. it was time to discuss cerebrospinal fluid blockage, arachnoid webs, cysts, and asymmetrical ventricles. I have far more knowledge of the brain than I ever thought necessary.

This doctor is Alex's 10th specialist that he has seen since October. We've met with so many different specialists, tested him for different diseases and problems, and discussed his symptoms. Yet chiari is the only problem we've found.
Alex's fluid blockage and cerebral tonsils looked the same as the prior MRI.
Once the MRI didn't show any remarkable changes, then the neurosurgeon discussed symptoms. Quality of life is taken into consideration as we discussed our notebook full of symptoms. Page after page lists gagging, dizziness, headaches, leg and foot pain, hand and arm pain, body weakness, neck pain, temperature regulation issues, screaming, and nose bleeds.
The neurosurgeon weighed the risks and benefits with us. Alex has a 50% chance of surgery working and a 10% risk of a leak after surgery with further complications. I was ready to walk out the door and continue seeking answers for him. But where would we go? We've seen every specialist recommended to us and the only other option is to wait a couple years to receive a blanket type diagnosis that simply means he has chronic pain and needs to continue with pain medication.
That's when the neurosurgeon looked at us and said, "if it was my child, I would do it." The possibility of regaining his quality of life outweighs the risks. We talked a little longer about a surgery date and the details. I asked him, in order to be sure, and so I could hear it again, "would you do this surgery if your child presented the same?" "Yes," he said.
At that moment I let a few tears escape because brain surgery is the answer though it doesn't feel quite right to hand another child over to have their skull cut open. I don't know how I will let my grip go or how I will trust that this stranger will take great care of my son.
In 16 days, that is what I will do. I will have faith in the doctor's training and experience. I will trust that my friends and family will rally with us. I will hold on to knowing that my son will come home without complications. I have to hold on to that because yesterday, Alex sat next to me crying. When he was able to speak, he told me that he was scared about getting an infection in his brain. I was able to comfort him and talk through his pain but the entire time, the nagging reality pulled at my heart. 

At the end of Alex's appointment, I told the doctor that I had an MRI a couple years ago. The neurologist thought that I had MS but I was cleared of it. I was diagnosed with fibromyalgia and sjogrens. While I was never comfortable with the diagnosis of fibromyalia, I had a diagnosis. I was glad to be done with testing and moved on with the fact that I could do little about my chronic pain.
The doctor asked to see my MRI, which was just a photo on my phone. It took a second for him to look at the MRI and I was diagnosed with chiari. Yep, there it is. I have chiari. The doctor wants me to get the disc with the MRI, make an appointment with a new neurologist, and then schedule an appointment with him to discuss surgery.
In an effort to compartmentalize my world, I haven't spoken about myself and my symptoms to many people. I have to concentrate on my children. However, several friends have asked me why I thought I had chiari. In some ways, my silence has been misleading.
Over two years ago, my pain got increasingly worse. It has been a strange road. Degenerative discs were found but no real reason for my pain. I tried pain medication that wasn't narcotic-based. I gained a lot of weight but didn't feel better. I was told to walk more, move more, and I would feel better but I didn't. I stopped taking the medication and the chronic pain has continued. 

I have migraines, neck pain, back pain, tingling hands and feet, and sore joints.  I get electrical type shock down my face and body.  I have hot flashes that aren't menopausal related.  I get dizzy and forget things easily.  Some days I can barely walk because it feels like my feet are enormous stumps.  There are numerous pains that come and go and aren't associated with extra weight or age.  

Just over a year ago, the pain was intense.  The ongoing pain caused depression that I haven't been able to overcome completely.   It's difficult to love life when your day is full of pain, even if I have a beautiful life.  I confided in a few people about what was going on, and spoke to my primary doctor.  Venting, crying, smiling through the pain but nothing really helped.  

Now I know that my brain is herniating into my spinal column.   No wonder I feel like crap.  I'll keep my brave face on for the world that doesn't care to see more but inside I am crumbling.