At the end of February, I had a severe headache on the left side of my head which lasted for seven days. Nothing seemed to relieve the pain so I contacted my naturopath. Though I believed the pain to be muscular, she ordered a CT scan just to be safe.
I had the CT scan of my head on Feb. 28th. The results showed nothing which would have contributed to my headache. (I still think it was muscular.) However, the CT showed a tumor behind my left eye, in the zygoma bone of the sphenoid region of my skull.
The next day I had an MRI to get a more detailed picture of what was going on. The radiologist recommended that I get a biopsy since it was still not identifiable.
My ND gave me reference to a highly regarded neurosurgeon on the Eastside, but I called 4 times in a week, leaving 2 messages and no one called me back. They just kept sending me to voicemail. This made me very angry and upset so I did some research and found a different neurosurgeon, this time in Seattle.
I asked my ND to send me to Swedish Neuroscience Institute instead. She apologized for the previous referral (it was the first time she'd ever needed to refer someone to a neurosurgeon) and she took him off her list. A week later, they finally called me back and I told them "no thanks." That office would've been more convenient, but I didn't feel comfortable with them, just ticked off.
I got in to see Dr. Sarah Jost (pronounced Yost, rhyming with "host") the next week. She suggested we may be able to get a biopsy using CT-guided radiology and took my case to the Tumor Board at Swedish the following Monday. However, the concensus was that the location was too risky for a needle biopsy, even with the CT-guidance, so we went with Plan B.
Over the next two weeks, I had a CT scan of my chest, abdomen and pelvic area. The following Wednesday, I was scheduled for a bone scan, but the scheduler put me down for the wrong test. They caught it before I was scanned but it was annoying and frustrating.
I got in for the correct bone scan the next day. This was a nuclear medicine scan that highlights areas of excelerated growth in bones. They use it to find breaks, tumors and the like.
Jake and I saw Dr. Jost again Monday, April11th. She said that the body CT scan and the bone scan did not show other areas of significance, however....(there always seems to be a but or a however lately) the orignal tumor they were concerned about did show up on the bone scan.
This means it is metabolically active, so it's up to something. The doctor said I didn't need surgery tomorrow or anything but she also didn't want to wait around for 6 weeks to watch and wait on it due to its close proximity to my brain and left eye orbit muscles.
I am tentatively scheduled for surgery on Friday, April 22nd. Dr. Jost wants to remove it if possible as well as identify it. It could take up to a week after the surgery before they know what it is, depending on what type of thing they find in there. So I will probably be out of the hospital before we know what we're dealing with.
My mom is flying out to take care of me and hang out with Amelie while I am recovering. I have some awesome friends out here who have been watching Amelie while I've been driving to Seattle to get my scans and tests and all the doctor appts. (Thank you, Deb!) Jake has been able to move his schedule around to help accomodate my appointments as well; his work people are being very helpful.
I am heading to Seattle again this Friday to meet with the surgeon's nurses to answer questions and help prep me for the surgery. I will be getting another head CT scan that day plus some blood work. Then Sunday, I will go again to have some special sort of MRI that will help the neurosurgeon map my head using some sort of "stealth" technology. (Yeah, they really call it that.)
I will have the surgery done in Seattle rather than closer to home because they need special equipment that is only available in the city. Kind of handy living in a large metro area sometimes even if I do have to cross the bridge and pay for parking. Most likely I will be in the hospital over Easter.
While I am not thrilled about having surgery, I am very relieved that the scans didn't show any other tumors. In the mean time I am trying to prep for 2-4 weeks of down time, which is a little difficult since we homeschool, but I have a pretty good support system in place. Oh, and I will end up having part of my head shaved so I may have a punk hairstyle for awhile.