A Plan In Motion

Consultation

Yesterday I finally had my consultation with neurosurgery and it went about as I expected:

1. On imaging, the mass is highly consistent with a benign petroclival meningioma and further identification will occur post-op
2. Surgery is recommended as the tumor is compressing my brainstem, wrapping itself around some of my brain arteries, and displacing several of my cranial nerves
3. The goal of surgery will be to debulk the mass followed by radiation to prevent regrowth and shrink the remaining tumor

Next Steps

The skull base where my tumor is located is an extremely difficult location for surgeons to access. Therefore, the surgery recommended would require a two surgeon team. The first surgeon is an otologist-neurotologist whose role is to open the surgical field through the side of my head. Once the surgical field is open, the neurosurgeon is responsible for debulking the tumor.

An otologist-neurologist is someone who specializes in treating problems involving the ears, balance center, and other areas of the head and neck. Why do I need one? Unfortunately, the most direct way to reach my tumor involves getting awfully close to these delicate inner ear structures and in some cases requires sacrificing them in order to get to the mass.

My next step on this journey will be a consultation with Dr. Cheung, the otologist-neurotologist who works the neurosurgeon Dr. Theodosopoulos. He will provide clarification on the approach and what risks will be involved as well as what structures may need to be sacrificed in order to get to my tumor. I will post another update after that appointment including more information on the surgical approach and risks for surgery.

A Second Opinion

Whenever faced with a major medical diagnosis, a second opinion is highly recommended. Though I have full confidence in UCSF's medical team it would be foolish of me to not get at least one second opinion. This surgery will be life changing and I want to make sure that the treatment recommendations are consistent with other experts in the field. Therefore, I plan to obtain a second opinion from Stanford Neurosurgery. I will post more about that as I obtain more information.

The Silver Linings

Looking for the "bright side" of a crumby situation is helpful for not getting bogged down with all the "scary stuff". Here are some positive things I have going on:

1. The tumor is benign- not cancerous and is not killing me!
2. The neurosurgeon does not think surgery is urgent, I could even wait up to 6 months, do a repeat MRI and see how the mass is growing (usually extremely slow)
3. There is no immediate danger of me having a stroke or seizures and I am not putting myself at risk for life threatening events when I exert myself despite my head feeling like it is splitting in half at times
4. I continue to be mostly asymptomatic despite the tumor displacing the nerves responsible for my balance, hearing, and facial sensation as well as compressing my brain stem
5. There are no restrictions I need to follow in regards to traveling which means I might be able to sneak a trip in before I go under the knife

That's all for now

Once I know when my next consultation is and hear more about a second opinion I will post another update. In the meantime, I will try to enjoy my life knowing I do not have a ticking time bomb in my head... more like a very unwelcome roommate that I would like to evict!