Dr. Akagami and Dr. Westerberg: Vancouver, BC, Canada

[Peter325]

I have been diagnosed with a 2.5cm AN on the right side and been given Dr. Westerberg and Dr. Akagami as my doctors. Everything I have found suggests that I have lucked into some fairly good hands but I'm wondering if anyone has any further information?

Thanks!

[mk]

Welcome to the forum. Sorry that you have been diagnosed with an AN, but you are for sure lucky that you got this team. The record of these two doctors speaks by itself - there are a few of us here who had surgery with them with excellent outcomes, from as far as Ontario. I honestly think that Dr. Akagami is one of the top neurosurgeons in North America.

My case was a particularly tricky one, with a fairly large AN that had been previously treated with radiation. I consulted with many doctors who gave me very grim outlooks. Dr. Akagami proved them wrong, I couldn't have expected a better outcome. In addition to his skills, he is very approachable, has very good bedside manners and truly cares for his patients. Note also that all the nurses and everyone else I spoke to at VGH think very highly about him.

I can go on and on, but I will only say that you can be confident that these two doctors will do the best  that is possible for your AN.

Marianna

[opp2]

Hi Peter, I'm sorry to hear you have an AN but you really did hit the proverbial jackpot with that team of surgeons. I had surgery with them too. They are outstanding, both of them. Dr. Westerberg is a long tall drink of water who likes to cycle, and Dr. Akagami is soft spoken but very approachable, and I liked him a lot. He put me at ease right away. They teach too so hopefully we will see more Dr. Akagami alumnus in the future.

Ask anything you like. If are going to have surgery at Vancouver Gen, let us know and we can give you some tips for the hospital, what to take, what to avoid, who to pay for a good meal...

All the best

Nikki

[Peter325]

Thanks for the kind words and reinforcement of my belief that I have good doctors. From the research I've done that seems to be one of the biggest factors towards a positive outcome. I've had a consult with Dr. Westerberg but I haven't seen Dr. Akagami yet, couple more weeks before that happens.

I imagine I'll have surgery at VGH but I don't really know yet, when I do you can bet I'll be back for some advice on what to take and who to bribe - these forums have been an invaluable resource so far, thanks everyone for sharing your expertise!

Peter

[Lori101]

Hi Peter,
I'm going to see Dr. Akagami in December.  Still waiting to hear about the appointment date for Dr. Westerberg.  Sounds like they're both very well thought of.

For now, I'm reading everything I can and driving myself crazy worrying about surgical complications, whether I'll be a candidate for radiosurgery and anything else I can find to worry about.



Lorraine

[Peter325]

Hi Lori,

Sorry to hear you've got an acoustic neuroma, it's tough to know what to do but I think we are particularly lucky here in Vancouver to have Dr. Akagami and Dr. Westerberg and I'm sure several other skilled members of the team. Who / where are you going for the GK consult? I was under the impression that 2.5 cm was the very upper limit for GK - mine is 2.5cm by 2.5cm by 1.5cm or so, a little ping pong ball in my head, from the reading I've done and discussions with my wife I'm leaning towards surgery at this point, though I will discuss GK with Dr. Akagami.

I'm trying to look on the bright side, we have a noisy neighbour and at night I just roll over onto my good ear and sleep peacefully through the night - there has got to be some upside to having a brain tumour!

 

Peter

[opp2]

You are so right about the rolling over thing Peter. I get better sleep now, especially on night shift, than I ever did before. I think I must have been picking up on the noise.

Take your time to make your decisions and weigh all of your options. You will be happy you did. 2.5 is the upper limit, but that also depends on what structures in the brain the tumour is compressing. If it is not, then that is a better candidate. Mine at the first MRI with the smaller measurements was pressing my brain stem far to the right, causing lots of side effects. They docs here in Ontario said flat out, NO to radiation due to the proximity to the brain stem.

But we are all different, as different as our tumours are.

all the best

Nikki ...say hi to Dr A and Dr Westerburg from Nikki in Ontario and tell them I'm doing FAB U LOUS (thanks to them).

[Peter325]

True, the tumours do seem to all be different, mine isn't producing too many side effects right now but others that are much smaller seem to be wreaking havoc on some people. I go for my consult with Dr. Akagami on Monday - should be interesting. I'll definately pass on your regards.

Cheers!

 

[mk]

Good luck with your consult, make sure to print out the list of questions that you can find circulating on the forum.
Tell Dr. Akagami that he has a couple of very grateful patients from Ontario (Nikki and myself).

Marianna

[Lori101]

Peter,
My MRi and report are being sent to the Winnipeg Gamma Knife centre.  I gather Dr. Akagami does the fractionated radiation as well as surgery.
I suspect mine is going to be too large for radiation.

Keep us posted.  My tumor is about the same size as yours, so it will be interesting to hear what he tells you.

Lorraine

[Peter325]

Hi Everyone,

Well I'm back from the consult with Dr. Akagami and I've had a couple of hours to digest it. I've decided on surgery as my best option, not that I'm filled with delight at the prospect of someone splitting open my head, but at least I think I have found an extremely capable neurosurgeon in Dr. Akagami.

I've opted for surgery for a number of reasons but the main one is that my tumour is not a good candidate for radiation. For one thing it is getting up there in size, the biggest he said they do with radiation is 3.0 cm. Due to it's size there is a significant amout that is in contact with healthy brain tissue. A certain amout of this tissue would get radiation as well (increasing as you go up in tumour size). Also irradiated tumours often swell before they shrink and due to the way the nerves are stretched by the tumour this swelling could cause problems. Having said all that he did say that if I was adamant that I wanted radiation it could be attempted.

He didn't give me good odds on preserving my hearing but did say that he felt it was worthwhile to make the attempt, hence the retrosigmoid approach, according to him I've got a 40% chance of still hearing afterwards but at a reduced level (my hearing is still quite good, about 80% or so). I was surprised to hear that (hah hah) as I had pretty much written off my hearing and accepted that I will likely be SSD. Facial paralysis he said there will be some but that I should recover within 6 weeks to 6 months, back to virtually normal. There is a small risk that I could experience significant paralysis. Fingers crossed on that one, I'm not ready to speak like Jean Chrétien just yet.

That's about it, I'm on the list and waiting for a date, in the meantime I have to go get another MRI with contrast to give him a better picture of the tumour and surrounding nerves and blood vessels.

Oh, and I asked him if the brain tissue that is currently compressed by the tumour will decompress and he said "absolutely" and then I asked "Will I be smarter after?"  Hah, hah, he answered me seriously though, apparently not, bummer, should be some benefit to a brain tumour!

As always, black humour and my wonderful wife keep me sane during this journey.

Next on the list, tell my employer, that should be fun...

 

[CHD63]

Peter .....

So glad the decision has been made.  That should reduce the anxiety of the unknown at least.

I do not know what kind of work you do, but I would choose my words very carefully when telling my employer.  You already are experiencing symptoms from the AN so have had to adapt, I would think.  After surgery, you may, indeed, function better (after a reasonable recovery time).  Best not to paint a worst scenario case.  I would be positive in my approach for now.  (Just my opinion, of course.)

Best thoughts and let us know your surgery date, when you know it.

Clarice

[mk]

I found people at work to be very understanding and supportive. So it may not be too bad.
As far as the surgery approach goes, Dr. Akagami specializes in retrosigmoid, and he will do this approach for medium-larger tumors, even if there is no hearing left to save (like in my case). There was a patient here, Adrienne, who had surgery with Drs. A. and W. and her hearing was saved.
As for facial weakness/paralysis, you have to keep in mind that there is a distinction between the two. Yes, the chances of some facial weakness are high, but this could be very mild. I had very mild weakness after my surgery (only noticeable to the doctors). I would rate it a 1 on the House-Brackmann scale. It cleared completely in a few weeks.
I am glad you have made the decision, this is often one of the trickiest parts. Did you get any indication of the timeline?

All the best,
Marianna

[Peter325]

Thanks again for the wonderful advice, keep it coming, can't get enough of hearing that people make it through all this.

My collegues at my office are approachable and understanding, it's the larger bureaucracy that I'm slightly worried about. I spoke to some people today that put my mind more at ease, I do have a good job and I really enjoy it so I'd like to keep it if I can.

Lorraine, I'd be curious to hear what the GK centre in Winnipeg says to you if you are inclined to share.

As for timeline, probably the spring time but it's a little uncertain at the moment, I gather I have a few more appointments and doctors to see before they settle the date. I didn't agonize over the decision that much, for me it was essential to find doctors who's opinions I trusted and then go with what they thought was the best approach for me. Once I felt comfortable with Dr. Westerberg and Dr. Akagami the rest was fairly simple, especially after the consult with Dr. A, I really felt he gave me the straight goods, it won't be an easy road but it's a doable road in his hands. I guess I feel that I have the best chance at a good outcome with him. There is always the chance that it will go wrong but I really felt that he would do all that he could to minimize the risks.

Again I have to say I wasn't sure if posting on the boards would help me because generally I'm not much for talking about something if it won't actually change things but hearing from all of you has been very helpful to me, hopefully I'll come through this and have advice and stories to share with others that might help them.

Cheers!

[kraynok2]

Peter,
  It's good you've made a decision.  That seems to be the hardest part of this journey--finding information, doctors you feel good with, and deciding which route to go.  I hope you do not have to wait too long for the surgery.  Good luck to you.
Sandy