The big appointment

So we're back from the appointment with the Neurosurgeon. We ended up having to wait 2 hours in the waiting room, but considering that my family doctor wouldn't have gotten me an appointment until Feb 17th, an extra couple hours isn't too bad. So when Dr. Chen actually did come to see us, he was quite up beat, but Jeff thought that his mood/face changed after he started to look at my MRI (I couldn't see his face as I was sitting behind him). He was surprised at the size of my tumour and also said he couldn't believe that I still had such good hearing. He said that for the size I should have had a large degree of hearing loss. From further in the conversation I think his concern was also about where the tumour is putting pressure as well as all the symptoms I'm already experiencing.

So he started the discussion by talking about why I'm feeling the symptoms now and didn't a year ago. Basically being pregnant and the hormones and increased blood flow makes this slow growing tumour grow quickly. He thinks I've had this for at least 2-3 years (I thought it would have been longer, but he said it's hard to tell). He then laid out the options for us. He said there are 3 options with 2 of them not being very good. He first talked about doing nothing and just waiting and seeing. He said that the pro with this is that I'll keep my hearing, but the risk is that this tumour is already quite large and waiting will just increase the risks when it does need to come out. Waiting will start to increase my symptoms and some of them becoming serious. I would also have to have MRIs every 8 months.

The next option he talked about was radiation, but he said that actually doesn't get rid of the tumour and wouldn't necessarily get rid of the symptoms. There is also the potential for complications down the road relating to the actually radiation. On top of that he thinks that they wouldn't even do radiation on a tumour my size.

The last option is surgery. The downside to surgery is that recovery is going to take up to 6 months and I will have 100% hearing loss. He said that with the size of my tumour and it's location they wouldn't even attempt hearing preservation as there is increased risk (there is more brain compression with this option) and the chance of it actually keeping my hearing is only 35%.

He then did a bunch of test including me touching my finger from my nose to his finger as he moved it about. He tested how much of my face and mouth was numb. And then did some balance test. He made me stand with my feet together and then made me close my eyes. It was really annoying but I kept falling backward. I then had to walk looking straight ahead and had to put 1 foot in front of the other, heel to toe. I did OK for a couple steps, but then kept falling over. I'm not really sure why, but I found this very emotional. I guess it was that even with all the symptoms I already have, this was 1 more thing that I couldn't do that I didn't realize. The Doctor also explained to me that the reason I can't lay flat is because of increased blood flow to your head when you are laying flat and the tumour is also putting increased pressure were it should not.

So with all this information, we pretty much let him know that I'm ready for the surgery as soon as possible. I so want to get back to normal. I know that I'll feel worse after surgery, but I don't care if I know that every day it's going to get better. Right now I'm at a stage that every day I'm getting worse, so to change that trend would be great. The good news on this front is that it looks like I'm going to get a date for late January. That would be a month before my family doctor would have even gotten my 1st appointment with the surgeon.

My sister Janet asked me how I felt after the appointment and I think that I'm a little disappointed. I had really hoped, after meeting Dr. Niaberg, that the fact I have good hearing would increase my chances of keeping it. I'm also a little down about the recovery time. I was really hoping that with new surgical advances (like using GPS technology to target the tumour during surgery) that recovery would be a month or 2. It's a little sad to hear that I can't expect to start getting back to normal until the summer. It's funny because these 2 thing's I'm down on, are things that I had actually prepared myself for when I first found out that I had this. During the coarse of the last 6 weeks I had allowed myself to become optimistic about it, and now to hear from the actually surgeon that my hopes are not likely is a little hard. I know that given a day or 2 I'll be OK with it again, it's just a case of getting my mind around it.

So now we just have to wait to hear from Dr. Chen's office with an exact surgery date and then make plans of what we're going to do with our family during surgery and my recovery. On to the next step and even with my disappointments of today, I'm VERY happy that things are moving forward.