The First Neurosurgeon Visit

This morning we went to Hopkins bright and early for an 8am appointment with the neurosurgeon. The original surgeon who was consulted by the ER referred my case to, of all people, the same surgeon that did all three of Matt's dad's surgeries (Dr Q). When his assistant came in to see us she said the same thing everyone's been saying "I saw the last name and just said 'There's no way!'."

She asked me about my symptoms and history, did a quick physical test of my strength bilaterally and how I followed with my eyes. I gave them the MRI and CT scan films Matt had picked up from the other hospital and she went to review them with Dr Q.

Dr Q came in and reviewed some of the symptoms the PA had written down and related them for us to what he saw on the scans. Then he invited us to come look at the scans with him so he could really show us what he was talking about. I had already looked at them the night before and thought they looked pretty bad, but figured "what do I really know about brain stuff anyway?" Unfortunately, however, I was right.

Dr Q said he never likes to use the word "benign", because can any brain tumor really ever be "benign"? I really liked that since when we've told people that it looks benign meaning non-cancerous they seem to think that means all risk is gone. As we were told before, the tumor looks to be either a meningioma or vestibular shwannoma, both of which are generally non-cancerous. It is "pretty sizable" and is displacing the left side of my brain stem, with a little cone shaped piece that goes into my left auditory canal. This is, apparently, a lousy place for it to be. In addition to my brain stem, a lot of important nerves run through and around there.

(It's hard to take a picture of an MRI. This is looking from the back of my head. You can see the big white blob is the lesion.)

(Another view. Here you can kind of see the cone shaped piece going into my ear.)

(A slice view from the top down. The kind of crescent shaped white blob within the grey is the tumor. Check out my creepy eyes!)

Dr Q again reviewed our options, including 1) doing nothing (not recommended), 2) radiation (also not recommended because it's so big that they would need a lot of radiation and would probably then mess up a lot of healthy brain in the process), and 3) surgery. He told us he would like to set up a team of at least three surgeons, including an ENT specializing in these types of tumors. The surgery will be pretty intricate and will likely take a full day. It will also be pretty risky, including risks of facial paralysis, lost hearing, and of course more serious things. He was very straight forward in saying he's done many of these surgeries where the patient has come out just fine, but he's also had some where the patient "didn't walk out".

Putting together the team and getting ready for surgery could take another month. He called another neurosurgeon and an ENT while we waited and we will be meeting with them later this week or early next week. Luckily, the tumor seems to be very slow-growing so removal is not emergent. Because of the slow growth, my brain has been adapting to its presence and I don't have any swelling or hydrocephaly. Dr Q said it's likely the tumor has been there for a long time, even since before my first symptoms in April.

So I will be going to surgery sometime relatively soon. In the meantime...
-I can go back to tylenol and caffeine for my headaches
-No driving, since it is expected that my balance may be very off
-Regular diet
-No working for at least two months
-Call if I have more questions or think things are getting worse, or come to the ER on a night or weekend

And I guess otherwise life as usual?