Local Neurosurgeon Consult

I met with a Dallas neurosurgeon today. He was very kind and spent a lot of time with my husband and me discussing the possibilities regarding the residual tumor, placement of the mesh, and sphenoid sinus infections.

Here's what we discussed:

Regarding the tumor: He agrees with the recent MRI report that the tumor is stable and has not grown since last year. Depending on how it's measured, it's possible one doctor might perceive the tumor has grown, but overall he thinks it is unchanged. However, even though the tumor is stable he recommends gamma knife radiation. The tumor is small and so the the amount of radiation needed is minimal. In the long run a little bit of radiation could spare the surrounding structures of damage (specifically the optic chiasm) and stop tumor growth before it gets too big (and requires a larger amount of radiation). There is no question as to whether or not tumor exists in the left cavernous sinus, now the concern is when to start radiation...he suspects the tumor will continue to grow in the years to come without it. He suggested I discuss this with Dr. Kelly and my endocrinologist at M.D. Anderson. However, both doctors are aware of the residual tumor and neither one recommended radiation at this time, so I will not revisit this right now.

Regarding the titanium mesh: The doctor showed me where the mesh is located in my head. This is not easily identified on my previous MRIs, but clearly detailed on my most recent CT scan. For the past few years I have been under the impression that the mesh was wedged in the sphenoid sinus and not in close proximity to my artery. The most recent report states that the mesh is located along the mid and posterior sphenoid sinus, but also slightly extended upward into the left cavernous sinus and near the left artery. The mesh is encapsulated with bone and so removing it would be quite a dangerous task. He thinks carotid artery injury is likely during an operation and so it is strongly recommended that it be left alone. He is going to consult with a vascular surgeon regarding the placement of the mesh and whether or not any additional tests could be done to enlighten him to as to what risk (if any) there is to leaving it in my head.

Regarding the sphenoid sinus: What can be done to treat ongoing infections? The neurosurgeon thinks that surgery to open the right side of the sphenoid would engender air circulation and enable drainage. He mentioned this could be done by my ENT without going near the mesh. He's not sure what the cause of chronic inflammation or infection is, but he thinks this is a possible treatment plan.

The situation is not dire and the doctor is going to get back with me in a week or two with more of his thoughts after he's had a chance to discuss the findings with the vascular surgeon...I'll update then.

Tulips Against Tumors

Saw this announcement on the National Brain Tumor Society's Facebook page and decided to join in since I love getting out in the garden and this will be for a good cause. I have ordered my tulips and will be planting them in our garden.

From the organization's website:

JOIN THE FIGHT AGAINST BRAIN TUMORS!
"Help build brain tumor awareness by taking part in the sixth annual Tulips Against Tumors Tribute. Purchase tulip bulbs and then plant them on a designated date in honor of all those who have struggled, or are currently struggling, with a brain tumor. Choose from an array of single bulbs, combinations, or colorful mixtures...

National Planting Day - November 6, 2010 at 1 PM EST

Each year in honor of all those affected by brain tumors, we come together as a community to plant our bulbs on a designated date and time. All across the country, members of the brain tumor community will plant their bulbs 'together'. It is a powerful feeling to know that many people are honoring their loved ones by planting tulips at the same time."

For more information on future National Planting Days you can click here: Tulips Against Tumors

Bracing for a Fresh Perspective

I had just met with my endocrinologist at M.D. Anderson for my annual follow-up and overjoyed because of the news I received that my tumor was stable. However, the excitement quickly turned to confusion when I left his office. As I walked to my car in the parking garage, I received a call on my cell phone from my ENT's office in Dallas. The nurse on the line expressed concern and said that my doctor reviewed the MRI films and noticed some "changes." She wasn't specific about what kind and wanted to know if I was still having headaches. "Yes," I replied, "Headaches are still a problem. I had a raging one the morning of my MRI." The car ride home was filled with questions regarding the newfound concerns. I wondered if the nurse's questions were related to my tumor. Did the ENT have a different opinion about my tumor? Or was it just the appearance of my sphenoid sinuses? She didn't say. I needed to get a CT Scan and follow up with my ENT to discuss the findings. I met with him this week to go over the results. First, he said he tried to contact my neurosurgeon in California over the phone about his concerns before my appointment, but he was unsuccessful in reaching him. Because of this, he consulted with a local radiologist regarding his concerns about was he saw on the x-rays. The meeting outcome between the two doctors resulted in me being referred to a new neurosurgeon for a fresh perspective and closer look at what he described as the "big picture..."

My ENT explained that when a doctor looks at only one or two scans at a time, it is easy to conclude all is well. Sinus disease can look like typical post-operative changes and the residual tumor is still relatively small, so in a quick glance it would appear unchanged in size. However, when my ENT laid out the numerous MRI and CT scans chronologically, it told a different story. When he consulted the radiologist about my case, they agreed there were ongoing changes in the sphenoid/sella region of my head and the left cavernous sinus. It is difficult to determine the cause of the sphenoid changes, but the ENT is almost certain it is not scar tissue, and he suspects (but cannot say for sure) the dislodged mesh is part of the problem. Ongoing disease or infection in this area warrants surgical intervention because its proximity to the brain is a risk for meningitis. 

On the other hand, having surgery is risky because the mesh is adjacent to the carotid artery. Bone has begun to encapsulate portions of the mesh, making it difficult to remove without injuring the artery. The doctor continued to describe my predicament as "dangerous and potentially catastrophic" and believes a nuclear medicine work-up might prove helpful to get a better look at the bone in the pituitary region of my head before moving forward with any treatment plan. He has left the decision up to the new neurosurgeon. Also, upon closer examination, my ENT and the radiologist differed in opinion from M.D. Anderson that my tumor is stable. They suspect the tumor may have enlarged this past year.

The MRI report stated there were no worrisome findings. However, if it is true that I have infection and my tumor has grown, I will most likely need surgery and radiation treatment. Updates will follow when I get a clearer understanding of the big picture.