Just a really quick post

So I need to put a very short post up as I've had people ask me if they are missing something. I really don't have much to report. I'm being told that nothing could be arrange for my surgery for February, but I'm 1st on the list for March. I am also put on a cancellation list, but I'm thinking it's not likely that anything will come of that. I will be sure to post again if anything changes.

The good with the bad

So I had the 2 appointments with the 2 neurosurgeons today. The first was interesting to say the least. To begin with the doctor was not very friendly and started off by going through my symptoms and then gave me the standard balance and reflects test. He then proceeded to tell me that none of my symptoms had anything to do with my tumour except the ringing in my ears and the numbness in my face. He said if I'm thinking of doing the surgery to make my headaches or any of the other symptoms go away then I'm basically going to be out of luck as they are being caused by something other then the tumour. When I asked him way I couldn't lay down without the throbbing in my ears turning into a splitting headache, he said he didn't know but it could be stress. At that point I pretty much shut down and stopped asking him questions. All I was thinking is that I really need to see another neurosurgeon. Thankfully Jeff kept asking questions and kept the discussion going. He did at least show us on a model skull how they'd be going threw the bone. When we got out of the appointment I was SO frustrated! Every doctor to date has told me my symptoms are not typical of a medium sized tumour, but more of a large tumour. On top of that, ALL the literature I have seen or received to date has said the same. Below is exactly what the ANAC (Acoustic Neuroma Society of Canada) sent me in reference to "other" symptoms of the AN.

Difficulty understanding speech
Dizziness
Headache
- Upon waking up in the morning
- Wakes you from sleep
- Worse when lying down
- Worse when standing up
- Worse when coughing, sneezing, straining, or lifting (Valsalva maneuver)
- With nausea or vomiting
Loss of balance
Numbness in the face or one ear
Pain in the face or one ear
Sleepiness
Vision problems
Weakness of the face

I have all the above except the pain and weakness in my face. I think the only thing that me, the other doctors and the literature could agree with this Doc, was the fact that my migraines were likely caused by something else. I have to say that most of the reason for me being upset was because I have been feeling SO lousy for so long. Besides that, everyone else disagrees with this dude. It was annoying to think I'd have to go back for further testing to figure out why I can't lay down without a massive headache that makes me vomit. Never mind that the coincidence of it seemed a little unlikely to me.

So Jeff and I went to lunch, and my poor hubby had to deal with a pretty grouchy wife. After lunch I had calmed down and on Jeff's suggestion I called Dr. Chen's secretary to set up another appointment with him. I told her that everything Dr. Pirouzman had told us contradicted with what Dr. Chen had said. She said for us to stop by after our second appointment to see if Dr. Chen could see us when he got out of the OR. That made me feel a lot better.

Then back to the hospital we went for our next appointment with Dr. Shwartz, who thankfully is also head of Neurosurgery at Sunnybrook. What a night and day difference. Dr. Shwartz was the nicest man. He was super personable and chatty. He started by bringing up my MRI. He lightened the screen and enlarged it and asked us to get closer so he could show us what he was looking at. He showed us how the tumour was lying and exactly what it was putting pressure on. I have to say his next discussion made me feel very redeemed after the MRI report telling me that my "brain was unremarkable". In contrast, he told me that I had a very big brain :-). He did say that the reason I've been having more serious symptoms, is the fact that my "big" brain is filling up all the space in my skull. So when my tumour expands into my brain, the brain has nowhere to go and is pushing my brain stem to the right. It was crazy when he showed us on the MRI, you could see it very clearly. It kind of looked like it was being bent to the right. He then showed us why my face was numb and where this nerve was being pressed by the tumour. Once again when he showed us it was very clear. When I asked him why I couldn't lay down without a splitting headache, he told me that it's likely that the increased blood flow to my head is making my tumour swell which is causing more problems. I also asked him why I couldn't turn my head to the right or left without again getting a headache. He said he thinks the reason for that is because of all the pressure that is currently in my head is causing my veins in my head to be cut off when I turn my head.

To sum up the conversation he told us that my tumour is the very largest that he'd ever consider doing radiation on. He also said that radiation would make my tumour swell, which would make me much worse. He said that it was very possible that given the size of the tumour, the additional swelling, would quite possibly take my hearing anyway. He said he would not be comfortable about doing radiation me, and agreed with Dr. Chen that surgery really is my best option. He confirmed that I could count on feeling worse for the first 6 weeks after surgery and to expect much fatigue and balance problems. He reiterated that I would loose my hearing, but said that given what is going on in my ear, regardless of what I do, it's pretty much inevitable anyway.

So on the way out of the hospital we again stopped by to talk to Dr. Chen's secretary. We told her that after talking with Dr. Shwartz, he had confirmed exactly what Dr. Chen had said and we were ready to move forward with the surgery. We also asked her if we had another option then Dr. Pirouzmand, which unfortunately we don't. Dr. Pirouzmand is the only neurosurgeon that does this surgery with Dr. Chen. As much as I'd like to have another neurosurgeon, I'm still hearing more and more good things about Dr. Chen. For my dear sister Janet's info; Dr. Chen does about 2-3 of these surgeries a month and has been doing it for 20 years. So now we just wait for the surgery date. Cheryl (Dr. Chen's secretary) said that it'll likely be 2-3 months. Once she said that she must have seen my face because right away said "unless you need another schedule". All I could think to say was that I'm home with 3 little girls and feeling terrible and having a hard time making it through the day. I think I'm going to send her an e-mail tomorrow and some how tackfully letting her know again that Dr. Chen had talked about the end of January (not sure how to approach that yet). As well I want to ask her if there is any cancellation list I could go on. So, although the waiting continues, I'm at least 1 step closer. I'm also feeling even more confident that this is the right thing to do. I really like the fact that Dr. Shwartz has put it into perspective that my hearing is basically "doomed" anyway (my words, not his).

We're off for more appointments tomorrow

So I just finished getting a day's worth of stuff for 3 little girl's all packed and part out the door. Jeff is currently bringing all Danica's stuff over to the neighbour's and now I'm finishing packing Sidney & Keira's stuff to go to their daycare lady's house. I feel kinda bad as we're sleping Danica over to Barbara's at 6:00 am and then the other 2 to Jen's at around 6:20. Early for everyone. The bonus is that I just need to get the girl's dressed and out and they'll be fed at their respective places.

Our 1st appointment is with Dr. Pirouzmand, the Neurosurgeon. Then we see Dr. Schwartz, to talk about radiation. Turns out that Dr. Schwartz also happens to be the head of Neurosurgery at Sunnybrook, so it'll be really nice to talk to him as well.

In other news, I finally heard back from the woman that ANAC put me in touch with. She also had Dr. Chen as a surgeon and confirmed with me that from her research he really is the best guy to have. It's so nice to hear as we now have a lot of recommendations and nobody saying anything negative or even suggesting anyone else.

Some progress

So I'm a few days late with this news, but I do have an appointment with the Neurosurgeon. I had called the receptionist back at Dr. Chen's office as I actually had 2 other things to discuss with her. I first needed to talk to her about getting a letter from Dr. Chen for my work insurance as I should be able to go on short-term disability (I'm supposed to go back to work Feb 1st), and second I needed to talk to her about an appointment with the radiologist. After I had discussed both issues with her, I asked her if it was standard protocol to see the Neurosurgeon, which she said it was. I then asked her if it really would be Feb/Mar before I had my surgery, as I told her I was ready to cry when she had said that last time we talked (I also let her know that we had 3 kids at home that were 4 years old and younger). She said it was still likely, although, not 2 hours later she called me with my appointment. So I see the Neurosurgeon this coming Friday Jan 15th. She's also going to try get me into the Radiologist the same day to save us a trip. So the next step after this appointment will be waiting for the 2 surgeon's schedules to line up and for OR time. This surgery can take anywhere from 6 - 15 hours, so it's a fair chunk of time. I'm so hoping it will still be for late Jan or at the very least early Feb.

So a little bit of a disappointing thing, the sleeping pills don't seem to be helping as much as they did the 1st 2 nights. They are still keeping me asleep, which is great, but I'm still SO tired during the day. I do also need to mention my poor husband. Usually during my last trimesters of pregnancy I have such a hard time sleeping and getting comfortable (think I'd be used to this by now) that I kick my poor hubby out of bed and down to our spare bedroom. Well, the poor guy has once again been "punted". I told him that I'd gladly sleep down there and he could get up with the kids at night and EARLY in the morning. Some how he seemed more then eager to make the switch after that.

I also have to mention Jeff again as he was the best husband today. He spent most of the day vacuuming our house and when I say vacuuming I mean it in a BIG way. He vacuumed corners of our house that haven't been vacuumed in a very long time...I had no idea that we actually had a dust-bunny farm under our bed :-).

One more thing I forgot to mention. Since I have started to sleep sitting up, some of my symptoms have been better. For 1 thing the numbness in my mouth is much better and I can actually drink chocolate milk and taste it. It was so annoying before to drink that in particular. I could feel that there was cold liquid passing over my tongue, but I couldn't taste it at all. So that is progress. My face is still just as numb, although I think I'm actually getting used to it which is weird. So I just keep thinking that there is an end in sight, I just hope that it means I'll get the feeling in my face back. Facial paralysis is a bit of a worry for me, but I try not to think about it. The other progress is the fact I haven't had a migraine since the beginning of December. Since this is when I started to sleep upright, I'm not sure if this is because of that, or because I had also weaned Danica the middle of November and my hormones are now leveled off. Either way I don't really care, as long as they are gone.

Annoying

Just a short post as my vision isn't great today for some reason and it's super distracting typing when you see double of everything.

So I finally got hold of a live person at Dr. Chen's office this morning. Unfortunately I was told that I couldn't be given an surgery date yet as their office is waiting to hear from the other Neurosurgeon's office (their are 2 surgeons for this surgery) with an appointment date. I knew that there was going to be another surgeon involved, but I didn't know I needed to have an appointment with him before hand. I don't really understand why I'd need to speak to him either. When I told the girl that Dr. Chen said the surgery was to be in January, she said I'd be looking more like February or March. I was so frustrated. So I figure I first need to look into whether this is standard protocol. I thankfully have been getting a lot of information from the Acoustic Neuroma society of Canada, who have also put me in touch with 2 other former patients of Dr. Chen. I then need to call back and make sure that the receptionist is not mixing up the fact that Dr. Chen was going to make me an appointment with a radiologist (I don't feel it's necessary, but Jeff wanted to just talk to the guy) and some how on the paperwork it went down as neurologist. While I have her on the phone again I also need to stress to her that Dr. Chen wanted this surgery quickly and March is definitely not quick. It really is annoying to have to wait so much longer, especially when I had my mind around late January. Oh well, we'll have to see what information I get and how my 2nd conversation with the receptionist goes.


So in other news, I've had a little positive development. Last Friday I finally went out and got sleeping pills. I do still need to sleep on my tower of pillows, but after the 1st night of using the pills I felt SO much better. It was really amazing. I actually was able to get a few things done around the house and not go about in a daze just wishing I could go back to sleep. The last 2 nights haven't been as good, but I woke up for other unrelated reasons, so I hope that it continues to work.